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Title: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: SouptoNuts on November 14, 2011, 07:36:40 PM
I'm a regular member--need some anonymity.  I will be moving soon and would like to consider moving near a place that does desensitization for peanut--and I am looking for OIT specifically.  It's just one factor among many.  But all things being equal, the ability to go through desensitization would make a difference for my child at my child's age.

I will create a list here--and keep modifying it as people post.  I will indicate whether something is a treatment or a study and whether insurance covers it (typically). A study assumes that it will be hard, if not impossible to get in.

Location  |Type of Program  |Insurance Covers?
DukeStudyn/a
Dr. Wasserman Dallas   TreatmentYes
Dr. Baker Portland, OR   Treatment??
UVAStudyn/a
New EnglandTreatmentNo?
Little RockStudyn/a
StanfordStudyn/a
Dr. Mary (Minnesota? Wisconsin?)Treatment??



~ ~ ~

Edited simply to add "OIT" in the subject line as it appears that is a typically searched acronym these days for some LTFA therapy.  ~e  

Also added on 1/6/2013 SLIT and SCIT for search purposes
Title: Re: Allergy Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 07:41:20 PM
Stanford, apparently, is starting a program as well-- HK just posted about it here.

(Going to look up details)

Stanford Multi or Single OIT Study

That's it, I think.

So-- add Stanford University to the list.   :yes:

That one seems to be a study, but hk could probably get details on eligibility, or, of course, you could contact the physician directly.  Dr. Kari Nadeu is the PI.

From hk's post-- eligibility:

Quote
Stanford Multi or Single OIT
5-55 years old

Blood Specific IgE > 7
OR
Skin Test>6mm
+
DBPCFC (+)


Nice to see that there isn't a hard cut-off on RAST scores.  I know that has kept some people out of other study cohorts.  This one doesn't exclude on the basis of severe rxn Hx, either, which is good.

It'd be a hike, but do-able for anyone within about a four-five hour radius of S.F. 
Title: Desensitization Programs in the US
Post by: SouptoNuts on November 14, 2011, 07:55:55 PM
Bumping with the fixed subject line. Odd how that can change.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 08:03:06 PM
The Portland reference above refers to this allergy practice:

Dr. Baker-- Lake Oswego, OR

Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 08:06:15 PM
Allergy Associates of LaCrosse (now in Onalaska, WI)  The doctor that I think our OP was recalling is Dr. Mary Morris, who is still very definitely with the clinic as a physician.

This particular clinic is using SLIT, which may or may not (more probably) be covered by major health insurance plans.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 08:13:26 PM
New England Food Allergy Treatment Center

I believe that one of our regular members has begun treatment with them, or is about to.   They are in West Hartford, CT.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 08:16:09 PM
I don't have time to look right now, but when I was investigating the Wasserman protocol and looking to see who else was adopting it, I found that there was a practice using their OIT rush-style protocol in SLC, UT and also one near Denver, CO (I think-- it was definitely in CO somewhere).


Ahhh-- now I remember.  The Salt Lake City research effort was an EPICUTANEOUS method of desensitization, so not really OIT.

Colorado: http://www.coloradoallergy.com/newsArchive/2008_spring_newsletter.pdf  The thing is, though, their current website doesn't mention it.  You might have to call and ask.  That reference was from 2008, and it specifically excluded persons with anaphylaxis Hx.


Other likely places to hunt out west:

UW Medical Center

UCLA Medical School



Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 14, 2011, 08:23:57 PM
There's an office in Plano using the Wasserman protocol, too--

http://www.swallergy.com/food-dens-faq.html
Title: Re: Desensitization Programs in the US
Post by: DrummersMom on November 14, 2011, 08:26:54 PM
Mass General is recruiting for a clinical trial for peanut OIT.

http://clinicaltrials.gov/ct2/show/NCT01324401?term=food+allergies&state1=NA%3AUS%3AMA&rank=2
Title: Re: Desensitization Programs in the US
Post by: hedgehog on November 15, 2011, 05:32:30 AM
New England Food Allergy Treatment Center

I believe that one of our regular members has begun treatment with them, or is about to.   They are in West Hartford, CT.


You beat me to it, CM.  Yes, my DS is going there, and doing well so far.  It is not covered by insurance and the cost is $5,000. 

If you want more info, feel free to ask here or pm me.
Title: Re: Desensitization Programs in the US
Post by: aggiedog on November 15, 2011, 09:26:18 PM
My understanding was that Wasserman trained with a guy in El Paso for OIT.  A google search is coming up a blank, though, as far as being able to confirm it's still going on out there.  I'm guessing Wasserman's clinic could confirm or deny it.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 16, 2011, 12:16:53 AM
Hmmm... interesting, Aggie.  Our allergist (who knows Wasserman) was under the impression that Wasserman (and colleagues) had developed the protocol themselves, on the basis of some things happening back east and in Europe.

Maybe I'll ask him if I get a chance-- see if he knows anything more about it.
Title: Re: Desensitization Programs in the US
Post by: Macabre on November 16, 2011, 04:53:57 AM
Wasserman's office told me about this El Paso doctor too when we were looking at going down for it. But he changed it.

He protocol significantly if I remember right. I don't know if I kept my notes from all that.

I do know I have links to articles referencing his workr. Somewhere.
Title: Re: Desensitization Programs in the US
Post by: GoingNuts on November 16, 2011, 06:34:22 AM
I believe Mt. Sinai in NYC has one as well.
Title: Re: Desensitization Programs in the US
Post by: twinturbo on November 16, 2011, 07:50:41 AM
Quality of life in some mentioned areas.

California is going to be crazy expensive to live in.
Arkansas is pretty affordable and the level of development is insane. Housing was overbuilt and might still be cheap but you also have a glut of cheaply built houses--be careful there.
NYC and Boston are definitely hubs. If you live anywhere in the NE all roads are going to point there. We fly to Sinai and drive to Boston. Our choice is Sinai, even though I'm a patient at Brigham Women's. It's really hard to beat the facilities and support staff at Sinai. Mass General is good for a lot of things but Boston is harder to get around IMO than NYC. I'll drive NYC no problem but Boston, no way.

All things being equal if you could position yourself in Connecticut you'd have striking distance on about 3 places including Sinai and Boston if you're willing to drive.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 16, 2011, 11:07:38 AM
I'll add to that post that CA is probably no more "crazy" expensive than places near Boston or NYC.   :thumbsup:

There are really NICE places to live near San Francisco which are not awfully expensive, and San Francisco is a delightful place in every possible respect, IMO (weather is mild all year long, city has major league sports, world class arts organizations, museums, and fabulous youth opportunities abound in the area).

Further north, Portland is also a very nice place to live.  It lacks just one thing that most similarly-sized cities have, however-- major league sports.  (Well, it does have basketball.)  The arts opportunities there are somewhat reduced relative to some places, as well.  But the quality of life there is excellent.  Outdoor activities (beach, forest, mountain, river, etc) are amazingly affordable and accessible considering that Portland is a major metro area.  There are four distinct seasons, winters are mild, summers are equally mild, and there is NO ragweed.  None.  But you do have to enjoy molds, and grass/tree pollen... and what they say about the rain?  All true, I fear.   :thumbsup:  Anywhere on the west coast is going to feel shockingly liberal (to the point of leftist, probably) in the cities, and astonishingly conservative (okay, pretty much "red-neck") in the less populous areas. 

From a food allergy standpoint, we have Guittard chocolates going for us, but little else, I have to confess.  WA state has some good school guidelines, but OR and CA both lag significantly, and both states have budget woes that mean that outside of a few bright spots, K-12 education is NOT very good here anymore.  If I were choosing a spot on the west coast, I'd probably pick Vancouver, WA.  It's just over the river from Portland, and is more affordable (and has those better WA regulations) and access to all that Portland offers.
Title: Re: Desensitization Programs in the US
Post by: Ra3chel on November 16, 2011, 03:14:01 PM
Further north, Portland is also a very nice place to live.  It lacks just one thing that most similarly-sized cities have, however-- major league sports.  (Well, it does have basketball.)  The arts opportunities there are somewhat reduced relative to some places, as well.  But the quality of life there is excellent.  Outdoor activities (beach, forest, mountain, river, etc) are amazingly affordable and accessible considering that Portland is a major metro area.  There are four distinct seasons, winters are mild, summers are equally mild, and there is NO ragweed.  None.  But you do have to enjoy molds, and grass/tree pollen... and what they say about the rain?  All true, I fear.   :thumbsup:  Anywhere on the west coast is going to feel shockingly liberal (to the point of leftist, probably) in the cities, and astonishingly conservative (okay, pretty much "red-neck") in the less populous areas. 

From a food allergy standpoint, we have Guittard chocolates going for us, but little else, I have to confess.  WA state has some good school guidelines, but OR and CA both lag significantly, and both states have budget woes that mean that outside of a few bright spots, K-12 education is NOT very good here anymore.  If I were choosing a spot on the west coast, I'd probably pick Vancouver, WA.  It's just over the river from Portland, and is more affordable (and has those better WA regulations) and access to all that Portland offers.

If you've got questions about Portland, feel free to PM me.  :)
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 16, 2011, 05:25:57 PM
... 99% of the Hazelnuts grown in the US come from the four county region just to the south of Portland, however... for someone with a TNA to hazelnuts, this makes restaurant dining in the region somewhat nightmarish.  Similarly, crustaceans, fish, and molluscs are also problematic in restaurants. (Some things to be aware of.)

However, peanuts (and, actually-- other treenuts) are not as prevelent as they are in some other places in the country.  Because of widespread vegetarianism and veganism, there are a lot of options for people with allergies to "only" eggs and/or milk.   Seeds (all types) and the following specific treenuts are common regoinally:  hazelnuts/filberts, walnuts, almonds.

  There are some very good allergists in the northern part of OR, and in Western WA.

We also have.... Burrrrrrgervillllllllllle....  Mmmmmmmmmm... pumpkin milkshakes....   ;D
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 17, 2011, 10:23:22 PM
Talked to the Doc today about the group in Portland OR doing OIT using Wasserman's protocol.

Doc was quite forthcoming about several of the groups mentioned here.

Summarizing:

Wasserman's group in Dallas has-- by far-- the most EXPERIENCE with the protocol, and therefore, the most long-term data at hand regarding how participants fare down the road...

His <cough-cough> former colleagues  ;) have started doing this in CT...  and they probably have one of the tightest programs currently running in terms of protocol standards-- reason being that they are running under an IRB approval.  (Institutional Review Board) In my experience, he's likely correct about that.  He has a highly collegial and current relationship with that group, incidentally.  They talked about the protocol when he was in Boston just a few weeks ago, apparently.

He knows Dr. Baker here in Portland, also.  He did mention that one of his patients had been through the program up there (without discussing it first, actually, which he said with a fair amount of chagrin-- I've openly stated that I trust his clinical judgement sufficiently that I would NOT do something like that without his knowledge and approval), though he doesn't have a lot of additional details on that person's experience.  (And couldn't share them if I wanted them, so I didn't ask.)  He feels that Dr. Baker is an EXCELLENT asthma and allergy specialist, though-- highly capable.  So for anyone considering it, that is probably very good news.  Our allergist has Sinai in his pedigree and is a desensitization guru himself (albeit not for foods); in our experience, he knows all the food allergy gurus personally and runs with that pack of several dozen that came out of the same training programs in the Northeast during the late 90's...  in other words, we think his judgment is generally pretty accurate.

Bottom line, he still thinks that for someone like my DD, it's probably better to wait another 2-4 years to see what happens when these studies (and treatment programs) have enough participants with more severe reaction history.  His opinion is based in part on discussions with one of the PI's in Little Rock.  Even the OIT clinical trials have not been entirely smooth sailing...

and unfortunately, there is still not a lot of understanding of what happens LONG-TERM as a result of this kind of desensitization therapy.  In other words, the concern is 'yeah, but what am I trading it for?' in the long term.
Title: Re: Desensitization Programs in the US
Post by: SouptoNuts on November 17, 2011, 10:46:59 PM
Hmmmm...trading it for an easier high school and college life? 

:)

But thanks--that's really helpful.  I'll eventually add things to the table above with links--just can't do it yet.  I think it's good to get a list of all these in one place.  :yes;
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 17, 2011, 10:55:18 PM
No, his concerns were more along the lines of "other autoimmune dysfunction."

He mentioned Eosinophilic disorders in particular as having been VERY problematic for a certain subset (as yet not predictable via previous clinical history) of patients in this particular type of OIT with liquid doses... and that there just haven't been ENOUGH of the peanut patients to know if it is a problem for them, too...

and also, whether or not when the dosing is stopped, does the eosinophilia subside?  Evidence so far suggests that it may not be that easily reversible.

So yeah, that's not the kind of trade that anyone would (knowingly) make lightly, for sure.  EE is... <shudders>  NOT something I'd want to trade for a PA.  I think, anyway.   :-/  <sigh>
Title: Re: Desensitization Programs in the US
Post by: mommabridget on November 20, 2011, 07:38:42 AM
Very interesting thread, especially considering DS has been doing SLIT for over a year in a clinical trial.

BTW, he is on max dose - has been for months and still getting mouth tingling/itching and feeling of "impending doom" with most doses.

Good luck with your search. 
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 20, 2011, 10:20:19 AM
yeah, I'm in the same ballpark thought process as cm. If they *did* have anything obtainable, that would pass muster, it would be on the market now, raking in the dollars. It's going to be so "in your face", *IF* it ever happens. In the meantime, which could be a while, don't lose any sleep over it.

Seriously, I don't have a clue, but how did Xolair and it's cousin (I forget the name) do?
Title: Re: Desensitization Programs in the US
Post by: hk on November 20, 2011, 03:55:51 PM
Definitely let me know if you are interested in the Stanford study.  DD is starting it in February and I have most of the information you would need.  They are doing single and multi OIT and are also starting a peanut patch study at the beginning of the year.  They have already had some pretty good success with OIT for peanut only.
Title: Re: Desensitization Programs in the US
Post by: Carefulmom on November 20, 2011, 04:20:30 PM
yeah, I'm in the same ballpark thought process as cm. If they *did* have anything obtainable, that would pass muster, it would be on the market now, raking in the dollars. It's going to be so "in your face", *IF* it ever happens. In the meantime, which could be a while, don't lose any sleep over it.

Seriously, I don't have a clue, but how did Xolair and it's cousin (I forget the name) do?

Xolair had a small incidence of anaphylaxis to the Xolair itself.  As far as the cousin, do you mean Tanox?  That was before Xolair and looked promising, but two different companies were fighting over who had rights to it, so the studies were halted.   This was sometime when dd (age 16) was in elementary school.  When dd went to the FAAN Walk last month, another couple and I were speaking with the allergist who was there.  He feels that the densitization studies are very far off from ever becoming more than a study---numbers too small, long term results totally unknown.  He thinks that monoclonal antibodies are most likely to become the treatment, which is similar to Tanox.  He explained what the differences were, but I can`t recall right now.
Title: Re: Desensitization Programs in the US
Post by: aggiedog on November 20, 2011, 06:54:32 PM
Dd's been on her maitenance dose for over a year now.  No problems.  I have no idea if she'll ever truly outgrow, but even if she has to take 8 peanuts a day for the rest of her life, it is still a better trade-off than worrying about her contact ana PA.

Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 20, 2011, 07:51:43 PM
do that brings me to inquire are they even taking kids with severe/anaphylactic reaction histories and high rasts? My son's is greater than 7000 (if I remember 5900 was a class 5. 6?) and he has an Asthma diagnosis. At least they used to refuse. Seemed to me the kids who needed such a "cure" were excluded from the studies, so I can't see an approval to use it in mass clinical trials, if the day ever comes.
Title: Re: Desensitization Programs in the US
Post by: Carefulmom on November 20, 2011, 08:11:09 PM
What I meant by no long term results was that some patients who have undergone desensitization have continued their maintanance dose, and then had unexpected anaphylactic reactions.  He said that desensitization could not become approved treatment until they have a way to predict which patients are candidates and which patients are at risk for anaphylaxis while on maintanance.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 20, 2011, 08:52:16 PM
Yes, that has been our allergist's assertion since 2009, as well-- that until there are ways of differentiating who is a good candidate and who isn't, this is risky.

The news that some percentage of those treated are also developing eosinophilic disorders at more-than-expected rates is new, however-- and needless to say, disturbing. 

After all, in the case of "unexpected anaphylaxis," one could simply carry epinephrine and be aware of the possibility, YK?  It's not as if quality of life and medical status have been made "worse," really.

In the latter, though, that is DEFINITELY a risk that I want to know more about.
Title: Re: Desensitization Programs in the US
Post by: Macabre on November 20, 2011, 10:08:00 PM
My son has been accepted into the UVA program.  He's a class 3.  And his score recently went up.  When we tried to get into a Duke study a few years ago his score was too low (still a class 3--but we know that has nothing to do with risks for anaphylaxis, don't we?  His threshold for contact was pretty low). 

DS has no allergies to tree nuts.  He's never had eczema.  I'm just guessing he's at a lower risk for developing EE if that's a concern. 

I think the nature of the study protocol limits the number of participants. DS is in a small group. 

But enough places are doing them now that it's not that horribly isolated.

I do think the monoclonal antibodies  tack is probably the long-term solution.  But we'll be happy to go through a short-term one.  As long as he doesn't devleop EE, his quality of life will be improved immensely by desensitization.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 20, 2011, 10:17:07 PM
I'm guessing that you're right-- that not being MFA, not having other markers for severe atopy, etc. probably decreases the chances. 

And yes, single allergy, high sensitivity... the improvement in quality of life would be ENORMOUS as a payoff in the here and now. 
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 21, 2011, 06:52:25 AM
My son has been accepted into the UVA program.  He's a class 3.  And his score recently went up.  When we tried to get into a Duke study a few years ago his score was too low (still a class 3--but we know that has nothing to do with risks for anaphylaxis, don't we?  His threshold for contact was pretty low). 



Do they accept patients into the study with a class five or six, asthma, and severe reaction history? My son has had  nasty contact reactions but they were self limiting and we used benadryl for the discomfort. His first anaphylactic reaction, we didnt have epi (age one, history of colic from hell) but his face, lips and neck were covered in welts and swollen. Second anaphylaxis in kinder when a girl forced him to eat a "cheese" cracker that was actually peanut.   by the time the school called me, at least an hour elapsed but he did get epi. Never been hospitalized with anything allergy related, but was hospitalized with rsv, rotovirus, and mastoiditis. Two separate hospitalizations yesrs aoart. High total Ige ~1100. Asthma is cough variant.

They absolutely refused to make him part of the study when i inquired a few years ago.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 21, 2011, 07:18:56 AM
I'm guessing that you're right-- that not being MFA, not having other markers for severe atopy, etc. probably decreases the chances. 

And yes, single allergy, high sensitivity... the improvement in quality of life would be ENORMOUS as a payoff in the here and now.

No quoting:

I have a friend with a child who is peanut allergic. Frequent, frequent reactions. They are part of a study in Wisconsin and fly in routinely for oit from here (but not sure if it's exactly the same concept. They get "drops". ) I'm not sure where the drops are administered.

Anyways, long reaction history, and they come from a culture where food sharing is not only common, but the norm and expected. I'm sure the diagnoses was devastating, and there was a learning curve to be had there. When comparing our two children, they tend to categorize their child as more "severe". I don't argue with her, and don't agree one is any less "allergic" but I have noted my son's history and correlating lab documentation.  We just have a different philosophy. We don't trust relatives to prepare food for him just because they are relatives. We go to social functions and often don't eat, period. We avoid. And no, I wouldn't consider my son's diet limited in any fashion. Of course, it distanced some relatives, but don't let the door hit ya, you know? It's just a sacrifice I don't believe they are capable of, so I hope the regimine works out for them. It's almost imperitive it does.

Title: Re: Desensitization Programs in the US
Post by: rebekahc on November 21, 2011, 09:11:24 AM
WRT Xolair - Yes, Tanox came before Xolair and was being trialed as an allergy treatment.  Hugh Sampson was in charge of the trial and I was to the "signing my life away paperwork" when they lost the court battle with Xolair. 

Prior to approval for asthma, Xolair was not investigated as an allergy treatment because they felt they could get FDA approval much easier as an asthma treatment.  As soon as Xolair was approved for asthma (~2004) we started DS on it.  Even though he was only 7 (at the time of approval Xolair was for ages 12 and up), he qualified because his asthma was so bad and we were hoping to help his allergies as a side effect of the asthma treatment.  There was an allergist in Fort Worth who was trialing Xolair as an allergy treatment but our pulmonologist didn't want to risk DS being in the placebo group.  I have not heard the outcome of the food allergy trials done on it.

Our experience with Xolair could not have been more positive.  DS had an extraordinary number of LTFA with reaction history to back up the dx.  At the time of starting Xolair, he was reacting to peanuts, tree nuts, eggs, soy and wheat of the Top 8 plus many non-Top 8 foods like corn, potatoes, beef, mustard and most other legumes to name a few.  He also had severe environmental allergies including anaphylaxis to dog.  His asthma was out of control, too.

While DS was on Xolair he was able to tolerate all of his food allergens with the exception of peanuts and tree nuts.  We did not attempt those, but he had one incidence of his eyes swelling near PB and a slight reaction to probable tree nut cross contamination while on the Xolair.  I do believe both of those reactions were milder than they would have been before Xolair.  Once he started Xolair, DS came off all his asthma maintenance meds and only needed his inhaler a handful of times.  After being on Xolair only three months, we were even able to get DS a dog.

DS was on Xolair for about 5 years - we lost our insurance and were not able to afford the cost of Xolair without it.  I was worried that he could have a severe reaction as the Xolair wore off and his system became able to react to the IgE.  I was worried that after having those years of freedom he would begin reacting to all his allergens again and we'd have to take everything away from him.  I was worried his asthma would come back.  He's been off of Xolair about three years now AND HE'S FINE!!  He still eats everything he was eating while on Xolair and the only problems he's had are that non-baked milk makes his throat itch and if he eats more than about 2 eggs he gets stomach pain.  We still assume he's allergic to peanuts and tree nuts and avoid those and he has some seasonal allergic rhinitis.  That's it.  No dog reactions.  No asthma.  No endless ear/sinus/chest infections.

I don't really know how, but I believe the Xolair allowed his immune system to take a break - reset - stop being hypersensitive - something.  Maybe the few IgE that got through the Xolair block essentially resulted in desensitization.  Who knows  :dunno: .  I do know that whatever/however it has changed his life.     
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 21, 2011, 03:38:15 PM
WRT Xolair - Yes, Tanox came before Xolair and was being trialed as an allergy treatment.  Hugh Sampson was in charge of the trial and I was to the "signing my life away paperwork" when they lost the court battle with Xolair. 

Prior to approval for asthma, Xolair was not investigated as an allergy treatment because they felt they could get FDA approval much easier as an asthma treatment.  As soon as Xolair was approved for asthma (~2004) we started DS on it.  Even though he was only 7 (at the time of approval Xolair was for ages 12 and up), he qualified because his asthma was so bad and we were hoping to help his allergies as a side effect of the asthma treatment.

see, that was about the same time a major children's hospital approched us during a pulmo eval with paperwork to sign and wanted my son (also way under twelve) to be part of a Xolair study. Odd thing was, he didn't use an inhaler daily, never as a "rescue" inhaler, and had NEVER been to the ER or hospitalized for "asthma". (but once for RSV at age 18 months). By no standard did I feel it was worth the risk, and couldn't fathom why they'd want him in it. He had a bit of remodelling, but nothing outstanding. At that point, he had never been on predisone for asthma.

but, he *did* have multiple food allergies, including peanut, coincidentally. If that wasn't a conflict of interest, I don't know what was.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 21, 2011, 03:44:22 PM

DS was on Xolair for about 5 years - we lost our insurance and were not able to afford the cost of Xolair without it.  I was worried that he could have a severe reaction as the Xolair wore off and his system became able to react to the IgE.  I was worried that after having those years of freedom he would begin reacting to all his allergens again and we'd have to take everything away from him.  I was worried his asthma would come back.  He's been off of Xolair about three years now AND HE'S FINE!!  He still eats everything he was eating while on Xolair and the only problems he's had are that non-baked milk makes his throat itch and if he eats more than about 2 eggs he gets stomach pain.  We still assume he's allergic to peanuts and tree nuts and avoid those and he has some seasonal allergic rhinitis.  That's it.  No dog reactions.  No asthma.  No endless ear/sinus/chest infections.

I don't really know how, but I believe the Xolair allowed his immune system to take a break - reset - stop being hypersensitive - something.  Maybe the few IgE that got through the Xolair block essentially resulted in desensitization.  Who knows  :dunno: .  I do know that whatever/however it has changed his life.     

meh. We never participated in the Xolair study. My older son really really needed Singulair and Allegra daily for a number of years (8?) or, especially during moldy spring, or freezing winter, or pollen/tree season, he'd have the constant cough. Illness would morph into pneumonia.

Amazing thing, a few summers ago, a new physician quit him on both cold turkey (no advice). For the last two years, in your wildest dreams, you wouldn't guess he ever needed them. No mistake, they did their job while it was needed. It was kinda like me. I was the croupy/oxygen tent/bronchitis kid until my teen years, then voila' to this day, you'd never guess it. That's not advice, just happenstance, but I've heard similar stories.

Will it change in the future as his body re-adjusts and teen hormones level off?  I don't know. <shrug>. 
Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 21, 2011, 04:24:45 PM
That's a good point-- with kids that have comorbid atopic conditions (asthma, primarily, since that one is also a killer), gender may ultimately matter more than anyone used to imagine.

Boys tend to 'age out of' asthma in much larger numbers than girls do; being female, statistically, means you are likely to experience a significant worsening of atopic symptoms during adolescence, which is not true for males, who tend to experience the opposite phenomenon.

Asthma alone, on the other hand, seems to get better as airways and lung capacity get greater.  Just in general, I mean.  So it completely makes sense that non-allergenic asthma would improve during adolescence.  It's less clear why allergenic asthma should have such a surprising gender-specific prognosis.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 21, 2011, 05:54:56 PM
That's a good point-- with kids that have comorbid atopic conditions (asthma, primarily, since that one is also a killer), gender may ultimately matter more than anyone used to imagine.

Boys tend to 'age out of' asthma in much larger numbers than girls do; being female, statistically, means you are likely to experience a significant worsening of atopic symptoms during adolescence, which is not true for males, who tend to experience the opposite phenomenon.

Asthma alone, on the other hand, seems to get better as airways and lung capacity get greater.  Just in general, I mean.  So it completely makes sense that non-allergenic asthma would improve during adolescence.  It's less clear why allergenic asthma should have such a surprising gender-specific prognosis.

I actually edited out the offhand observation hypothesis I had that my son's lungs grew into his physiological size. That I guessed his organs had to catch up with his rapid growth (50 lbs at a year and no end in sight, although he's currently near 6'5" and probably 210 lbs. Kid wears a 48 XT slim dress coat. While I'm a woman, it might be the same, because my lungs are unusually large. I always have to warn the x-ray tech how long they are. My vital capacity was off the graph when I had pulmonary function tests.

Me smoke?  Don't be ridiculous....

but I digress.

I just didn't want to post what I thought might be pseudoscience, but lo....there's statitstical info to support it?
Title: Re: Desensitization Programs in the US
Post by: rebekahc on November 22, 2011, 12:07:44 AM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.
Title: Re: Desensitization Programs in the US
Post by: twinturbo on November 22, 2011, 07:38:24 AM
Omalizumab is the anti-IgE that Boston is working with to speed up immunotherapy (resolution of cow milk allergy paper) so I wouldn't see any reason why it couldn't provide a similar helping hand to rebekah's child. However, I think this is the model of success and Xolair (omalizumab) otherwise can have serious side effects for some. Talizumab was the cousin discovered by Tanox, Tanox being the company and not the product name so far as I know.

But hey, details aside that's a heartening success story on anti-IgE. Also very interesting to learn about the gender disparity in atopy and asthma in adolescence.
Title: Re: Desensitization Programs in the US
Post by: aggiedog on November 22, 2011, 12:19:16 PM
Quote
I don't really know how, but I believe the Xolair allowed his immune system to take a break - reset - stop being hypersensitive - something.

Dr. Mireku, before she left the practice to be a SAHM, said they believe a similar thing happens with the OIT.  That going thru it may increase the chance of truly outgrowing the PA.  She also said at the time (this was 2 years ago), they'd had two cases of EE with the PN protocol, both resolved when they stopped the dosing.

This practice seem a bit more loose on their criteria.  Dr. Mireku's words were something to the extent of "we take anybody" when it came to PA. 
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 22, 2011, 06:35:01 PM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.

if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.
Title: Re: Desensitization Programs in the US
Post by: momma2boys on November 22, 2011, 08:05:49 PM
I would so so so love to get my ds into one of these programs.  I can't stand seeing the anxiety in him, and in myself.  It just gets old.  :'(
Title: Re: Desensitization Programs in the US
Post by: rebekahc on November 23, 2011, 09:51:35 AM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.

if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.

It sounds as if the singulair and allegra kept your DS's asthma well under control.  Unfortunately for us, even a year round strict regime of very high doses of several maintenance meds didn't keep DS breathing from Sept-April - he stayed in the low yellow zone or red zone no matter what we did.  That's why I know he had not "outgrown" his allergies or asthma prior to starting Xolair.  I think often children outgrow before we realize - we assume the maintenance meds (asthma) or strict avoidance (allergies) are working when perhaps they're just not reacting anymore.  For us, though, that was not the case - those things never worked to begin with.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 12:01:15 PM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.

if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.

It sounds as if the singulair and allegra kept your DS's asthma well under control. 

yet major metropolitan children's hospital petitioned us to be part of the Xolair study. Why do  you think that was? Was it cherry picking?

If he had been part of the non-placebo group, would you say results related to him might have boosted confidence in the drug?

Or...could it possibly have been the delicious fringe of having a peanut allergy/multiple food allergy, for which the study was not approved?

Neither?

Just sheer ignorance?


Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 12:26:18 PM
None of this is advice, just what is supposedly common public knowledge. When I first became aware of Tannox and Xolair, the first thing I thought of was Enbrel, having come across several instances where the cancers they speak of, some widespread, were an issue.  Apparently they are similar in some fashion, similar enough to be compared as "Antibody Market Share Leaders". How similar they are, maybe CM could shed some light on? It would be appreciated.

http://tinyurl.com/8284hdc

___________________


http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/UCM070725


Quote
FDA is investigating approximately 30 reports of cancer in children and young adults.  These reports were submitted to FDA’s Adverse Event Reporting System over a ten-year interval, beginning in 1998 after approval of the first TNF blocker, and extending through April 29, 2008. These reports described cancer occurring in children and young adults who began taking TNF blockers (along with other immuno-suppressive medicines such as methotrexate, azathioprine or 6-mercaptopurine), when they were ages 18 or less, to treat Juvenile Idiopathic Arthritis (JIA), Crohn’s disease or other diseases. Approximately half the cancers were lymphomas and included both Hodgkin’s and non-Hodgkin’s lymphoma.  Lymphoma is a cancer of the cells in the immune system.  Lymphoma is not a recognized complication of JIA or of Crohn’s disease.  Other cancers reported included leukemia, melanoma, and solid organ cancers.  While cancers are known to occur in children and young adults, the reports of these events in children and young adults receiving TNF blockers are of concern and deserve further investigation. Long-term studies are necessary to provide definitive answers about whether TNF blockers increase the occurrence of cancers in children because cancers may take a long time to develop and may not be detected in short-term studies.


Title: Re: Desensitization Programs in the US
Post by: ajasfolks2 on November 23, 2011, 12:41:56 PM
(Just quietly reading along here.  Very interesting and informative discussion -- thank you all!!)

Carry on!   :coffee:

Title: Re: Desensitization Programs in the US
Post by: rebekahc on November 23, 2011, 01:32:21 PM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.

if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.

It sounds as if the singulair and allegra kept your DS's asthma well under control. 

yet major metropolitan children's hospital petitioned us to be part of the Xolair study. Why do  you think that was? Was it cherry picking?

If he had been part of the non-placebo group, would you say results related to him might have boosted confidence in the drug?

Or...could it possibly have been the delicious fringe of having a peanut allergy/multiple food allergy, for which the study was not approved?

Neither?

Just sheer ignorance?

My guess?  Because he was relatively stable he qualified for the study.  He was bad enough, but not too bad. 

Perhaps they offered all their patients the opportunity?  We, too, live in an extremely large metropolitan area and are treated at a major children's hospital.  When one of our various specialists is involved in a study involving one of our dx'es, we've always been offered the chance to participate.  I always assumed everyone was.  Many of the studies, we just had to answer questions and the doctor tracked data, so we would often participate.  The one study I allowed DS to actively participate in was a Singulair vs. Flovent study.  They gave us a palm pilot (this was before the age of smart phones) and we had to track his peak flows several times a day and then download the data once a week or so.  FWIW, neither med did much for DS, but Flovent was slightly better.  According to our pulmo, Singulair only works for about 30% of patients.  For those for whom it works, it's great - everyone else might as well have a placebo.

I think it's important to remember the distinction between a study (research) and a trial.  In the studies, they are basically comparing data WRT a pretty broad population where in a trial they're actually testing the effectiveness/safety/etc. of a particular med for a specific diagnosis.  A trial will have much more stringent enrollment criteria than a study.  In the Xolair study you mention, I'm surprised once you chose not to use the med that they didn't ask you to allow them to track data on your DS as a non-Xolair using asthmatic. 
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 01:43:52 PM
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair.  So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair.  Totally worth it.

if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.

It sounds as if the singulair and allegra kept your DS's asthma well under control. 

yet major metropolitan children's hospital petitioned us to be part of the Xolair study. Why do  you think that was? Was it cherry picking?

If he had been part of the non-placebo group, would you say results related to him might have boosted confidence in the drug?

Or...could it possibly have been the delicious fringe of having a peanut allergy/multiple food allergy, for which the study was not approved?

Neither?

Just sheer ignorance?

My guess?  Because he was relatively stable he qualified for the study.  He was bad enough, but not too bad. 

Perhaps they offered all their patients the opportunity?  We, too, live in an extremely large metropolitan area and are treated at a major children's hospital.  When one of our various specialists is involved in a study involving one of our dx'es, we've always been offered the chance to participate.  I always assumed everyone was.  Many of the studies, we just had to answer questions and the doctor tracked data, so we would often participate.  The one study I allowed DS to actively participate in was a Singulair vs. Flovent study.  They gave us a palm pilot (this was before the age of smart phones) and we had to track his peak flows several times a day and then download the data once a week or so.  FWIW, neither med did much for DS, but Flovent was slightly better.  According to our pulmo, Singulair only works for about 30% of patients.  For those for whom it works, it's great - everyone else might as well have a placebo.

I think it's important to remember the distinction between a study (research) and a trial.  In the studies, they are basically comparing data WRT a pretty broad population where in a trial they're actually testing the effectiveness/safety/etc. of a particular med for a specific diagnosis.  A trial will have much more stringent enrollment criteria than a study.  In the Xolair study you mention, I'm surprised once you chose not to use the med that they didn't ask you to allow them to track data on your DS as a non-Xolair using asthmatic.

They probably did. At that point, I high tailed it out of there. trial or research, risk must NEVER outweigh the benefit, and the risks associated with the injectible medication far outweighed any potential benefit for him.

Also....in either case, making someone part of such an endevor cannot involve them having to quit taking a medication or participating in a regime that would put them at an increased risk.


Designing them does take some forethought and often, researchers find their hands tied, and yes, unethical breeches DO happen. Just look at Wakefield....

Xolair was nothing unique and not the first horse in this race. There were known plausible outcomes in that drug class. Things you weigh heavily before inducting persons in and putting them at risk.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 02:21:35 PM
FDA and Xolair:

 http://www.reuters.com/article/2009/11/18/fda-xolair-idUSN1812824820091118



Quote
Dr. Peter Starke of the FDA's pulmonary and allergy products division told the meeting that while the drug had met its targets in clinical trials, its effectiveness in children was "invariably small and clinically modest."

The drug's current label for adult use contains a warning that it may cause anaphylaxis -- a severe allergic reaction that can be fatal -- and could also put patients at risk of cancer.


In no way was my son a candidate to participate. Non food allergy related, not one prior hospitalization, not even a visit to the ER related to Asthma.


Title: Re: Desensitization Programs in the US
Post by: CMdeux on November 23, 2011, 02:36:07 PM
Well, TNF blockade is a completely different drug class than the IgE antibody drugs like Tanox/Xolair:

http://www.nature.com/jidsp/journal/v12/n1/full/5650029a.html

Different mechanism, I mean.

What I find most appalling-- but highly instructive-- about the story of Embrel is that the drug was brought to market almost entirely EMPIRICALLY.

This is exactly the same kind of design paradigm which is being followed for atopic disorders (including the clinical work into desensitization and suppression of anaphylaxis) via drugs, desensitization protocols, and herbal treatments.  Nobody KNOWS why some of it works... just THAT it seems to.

Personally, that's something that makes me very very wary.  Because it often comes with a pricetag that you can't see when you sign on-- a pricetag that NOBODY knows at the time, more to the point.  Nobody knows enough about the underlying mechanism of how severe atopy happens to start with-- so treatments are tinkering with an engine using a timing light, basically, without knowing what makes the pistons move, or that without lubrication, the entire thing will eventually just seize.  (This isn't a perfect analogy, but it's as good as I've got today)

The herbal treatment is the one that looks the most promising (overall) at this point-- but the problem is that nobody has any idea what the mechanism is.  Just like with Embrel when it was first marketed.  It worked-- and it seemed to be unlike anything ELSE, mechanistically (which can be tested without knowing HOW it is different, by the way).    It worked when nothing else would.

Nobody stopped to consider that maybe the "Yeah, but HOW does it work?" might be important down the line in terms of side-effects.  Because it never occurred to anyone on the clinical side that it might matter (much).  Clinicians aren't (generally) people that have a good grasp on the underlying biochemistry here.  Not that they should, mind you-- they are physicians, not scientists.  But the problem is that there is so much pressure to do SOMETHING for patients that there are probably a lot of areas where the clinical trials and treatment protocols are running out ahead of the basic understanding of the system.   :-/

 I so wish that treatment design were being driven by better basic science.  <sigh>  At least with straight up immunotherapy, there is a considerable amount of empirical history so support the understanding of HOW it works. 

I also don't judge anyone for wanting to participate-- even if the risks are largely unknown right now-- because I am extremely sympathetic to how hard MFA/LTFA can be, in terms of quality of life.  I'm in that boat with y'all, and I know (bitterly) how high the cost is to a family to live with merely having 'avoidance' as your toolkit.  We're living it, too. 

Autoimmune disorders are some scary, scary stuff, though-- and that is one grab bag that most people should think twice about reaching for.  Knowing how to turn things ON in that system (via external pressors) isn't the same thing as knowing how to shut them back off again.  Researchers know how to produce an anaphylaxis model in mice.  What they do NOT know is how to "undo" that transformation.  The same thing is true in a variety of other autoimmune disorders, from RA to MS to TypeI diabetes. Heck, cancer is ALWAYS on the table when you tinker with things.
  Start turning knobs in that system in the hopes that {improvement in autoimmune disorder} will happen...  and you never know what you might end up with alongside that improvement.  That would be okay if we understood completely how to UNDO changes that we do, or if it were clearer what down-stream effects each change would make.  But that isn't where the science is right now.  KWIM?   So the benefit to an individual would have to be VERY large to justify the risks-- at least right now.  For some people, that is almost certainly true.  (R's son clearly benefitted a great deal from his Xolair treatment, and I know one other person who has, as well.)  But for someone like Ark's DS1, yeah-- I wouldn't have signed on for it, either. 

We refused Embrel for DD's eczema, too.  Unknown mechanism meant that for her eczema, no way was the *unknown* risk worth the benefit.     





Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 05:42:54 PM
Well, TNF blockade is a completely different drug class than the IgE antibody drugs like Tanox/Xolair:

[url]http://www.nature.com/jidsp/journal/v12/n1/full/5650029a.html[/url]

Different mechanism, I mean.



actually, I do understand that much. (contrary to what you might think about healthcare providers  ;) ) We're not all, if hardly the philistines you imagine.  ;D Quite well read, and do think on a cellular/molecular level quite often regarding processes, and a wealth of information at our fingertips, eagerly devouring downloads of information on our patients and rubbing noggins with some of the best.  We understand molecular biology to some degree, or are capable of it, given the chance.  Full disclosure:  My end of medicine demands it, and I work in a rabid teaching institution where there's not much we won't attempt if we can find a shred of evidence----wait, yes....Enbrel. You were saying?

I guess what I wasn't getting into my thick noggin that, what you said, a lot of it is unknown. I tend to NOT assume a lot of these projects are um.....U.F.O.'s., even though many participants in research forget they are involved in something, uh---experimental. And yes, what you said about being in this together. No fingers pointing at anyone, merely pointing something out, and that it's not a perfect science, like say....math.

There's wiggle room. 

That that is an acceptable standard starting out, provided there is some redeeming, immediate, even if only ephemeral, value found.



I think people feel more comfortable with unknowns than almost infintessmal risk factors when presented with a choice. That they fail to understand a 20 percent sucess rate means 80 percent dissatisfaction with possible serious consequence. That means L.U.C.K might play a role, and humans are by nature, gambling beasts.   

Or maybe not. I guess what was nagging me was if those possibilities of defeat and or serious adverse effect were something that could be influenced or within our control. It never occurs to me that things haven't been thoroughly vetted.....at first, naive creature I be.

Aside from you know, obvious risk factors, or contraindications. (and I've seen OODLES of medications used in the presence of BOTH. Off label, even.

Quote
What I find most appalling-- but highly instructive-- about the story of Embrel is that the drug was brought to market almost entirely EMPIRICALLY.


welcome to the practice.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 05:54:42 PM
i mean, how many lab scientists know this? (discussing it just last night, having a good chuckle, mythology and all):

http://www.cjem-online.ca/v6/n1/p48

Quote
In a 1967 prospective study, Taylor and Weil tested the effectiveness of the Trendelenburg position in 6 hypotensive patients in clinical shock and 5 normotensive controls.3 In 9 of the 11 of patients, Trendelenburg positioning was ineffective, causing reductions in systolic, diastolic and mean arterial pressures. These authors noted that, in the head-down position, the viscera weigh down the diaphragm and compromise lung volumes. They also suggested that patients were at higher risk of cerebral edema, retinal detachment and brachial nerve paralysis.3


it's pretty old news, but propaganda to the contrary abounds. There's something to be said about a practice, and in-the-field experience.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 06:04:08 PM
FDA and Xolair:

 [url]http://www.reuters.com/article/2009/11/18/fda-xolair-idUSN1812824820091118[/url]



Quote
Dr. Peter Starke of the FDA's pulmonary and allergy products division told the meeting that while the drug had met its targets in clinical trials, its effectiveness in children was "invariably small and clinically modest."

The drug's current label for adult use contains a warning that it may cause anaphylaxis -- a severe allergic reaction that can be fatal -- and could also put patients at risk of cancer.


In no way was my son a candidate to participate. Non food allergy related, not one prior hospitalization, not even a visit to the ER related to Asthma.


full disclosure:  There's a good number of things I *don't* go to the E.R. for, that aren't E.R. worthy, that the vast majority of laypeople will head for the registration desk for. I know a good number of HMO's won't pay for an ER visit unless you are admitted, and so do health care providers. That's not saying anything about motive, but just fact. That said, I don't have an HMO, never have, and I can count on one hand the number of times my children have been to the ER (4), and three resulted in admissions. 9-10 day stays. Fourth trip to the ER was a foreign body (metal) in my son's eye. I knew it had to go, and after several hours of flushing, it hadn't budged. Turns out it was embedded in the sclera. Holiday weekend too. Ah, hell has many levels.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 23, 2011, 06:06:19 PM
I remember plenty of Xopenex nights....with several children.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 24, 2011, 07:55:16 PM
I remembered something today as I was contemplating whether or not to use the "Protopic" ointment prescribed for my daughter tonight by a pediatric dermatologis from the children's hospital. Insert from the pharmacy said something about: "longterm effects are unknown" and something about skin cancer and tumors. Not your typical "steroid" creme, actually it's not a "steroid" ointment at all. It's active ingredient (tacrolimus) is a drug typically used to suppress the immune system for organ transplants.

And she's not even fully vaccinated.

I used it once on her face (a half a pea size amount) and the results....improvement overnight. She's getting scaly and dusty however, now 24 hours without an application. If I use it on every area of eczema....it's going to be a very significant amount, and I worry about systemic effects, considering the broken nature of her skin.

She has oodles of dusty white scales around her eyes, eyelids, mouth, nose, jawline. She looks like a ghost. Petroleum jelly just makes it angry and red. Vanicreme is useless on it.
http://www.drugs.com/pro/protopic.html
Title: Re: Desensitization Programs in the US
Post by: aggiedog on November 24, 2011, 08:44:26 PM
Quote
Because it often comes with a pricetag that you can't see when you sign on-- a pricetag that NOBODY knows at the time, more to the point. 


My sister has been on Embrel and Remicaid, which I'm guessing is similar in action.  For her, it was life changing.  When your life is that miserable, a chance of the devil you don't know is better than the devil you're already living with.

I totally understand your point.  Just saying sometimes consenting adults are willing to chance it.

Ark, I LOVE the tacrolimus type meds.  For bad eczema around the eyes, there is nothing better.  Steroids work great, right up until you are blind from your uncontrolled glaucoma and cataracts.  I warn all my patients about the possible risk, and they all prefer to use it anyways.  Agreed, slathering all over a small child's body is a much larger dose than an adult's eyes, but for them it makes the risk more acceptable I think.
Title: Re: Desensitization Programs in the US
Post by: Arkadia on November 27, 2011, 08:12:30 AM
Quote

Ark, I LOVE the tacrolimus type meds.  For bad eczema around the eyes, there is nothing better.  Steroids work great, right up until you are blind from your uncontrolled glaucoma and cataracts.  I warn all my patients about the possible risk, and they all prefer to use it anyways.  Agreed, slathering all over a small child's body is a much larger dose than an adult's eyes, but for them it makes the risk more acceptable I think.

The derm only wanted me to use the protopic on her face, mometesone on the rest of her body. (the visit was um...about 45 seconds tops, dh had to give a history to possibly three "students" before she came in and a pa handled the rest.  ~) She spent a lot of time the first visit, but this is why I LOATHE major networks with brand names that are teaching institutions. We wait FOREVER so we can see the person with all the letters after their name. Not some newbie greenhorn.

I should have taken her and made the PHYSICIAN do a thorough assessment. They didn't even notice her swollen/infected and now near grotesquely swollen pinky finger because they did a sh***y ASSESSMENT. Actually, hubby said they rushed out, and he was so pissed, when the doc left after less than a minute he didn't bother bitching.  It has several deep cracks in it, and no, dear doc in the box, the medicine isn't working.  We've already been the mometesone route, (and was on triaminolone ointment).

I mean, do these people understand why even professionals like myself don't trust them? Or what they prescribe? It's a mill. I got better service (and more effective treatment) from my pediatrician regarding it. It's just I can't put the lotion he prescribed by her eyes (it OTC Eucerin with intensive repair and has alpha hydroxy in it--instructions say to avoid eye area)

Several days after an appointment with a children's specialist you wait 2-3 months to see shouldn't leave you at square one again and items missed.

I feel like they just juggle a list of meds, and throw in a big gun once in a while, hoping to keep you at bay until it resolves or becomes fulminant. I swear, it's eczema, not the plague, and they are the top of the food chain.  I'm so dissapointed. My daughter is dissalusioned to. Big fancy office, play area, televisions, doll houses and doctor can't make the itch or the red angry plaques go away. (but hey, great marketing)

If she only new her odd belly ache might be from the new medicine. a****oles.

If they put some thought into the medicine (and a decent exam/followup) I'd have more faith in them and be less po'd. When will professionals learn a little time and thought go a long way?
Title: Re: Desensitization Programs in the US
Post by: SouptoNuts on November 27, 2011, 08:44:18 AM
But back to desensitization...this has been very helpful.  Thanks!
Title: Re: Desensitization Programs in the US
Post by: LinksEtc on May 11, 2012, 08:31:39 AM
"Oral Immunotherapy for Food Allergy: Not Ready for Prime Time"
http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/

Quote
I wish to caution that widespread adoption of any OIT methods is premature, and may lead to crushing the hopes of patients, and worse.
Title: Re: Desensitization Programs in the US
Post by: CMdeux on May 11, 2012, 09:46:44 AM
"Oral Immunotherapy for Food Allergy: Not Ready for Prime Time"
[url]http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/[/url]

Quote
I wish to caution that widespread adoption of any OIT methods is premature, and may lead to crushing the hopes of patients, and worse.



This is exactly what our allergist has suggested re: peanut with our DD.  (Much to our disappointment, obviously)  He has also cautioned us that baked egg may not be a true "cure" but that isn't our goal-- our goal is to establish sufficiently high tolerance so as to make anaphylaxis less likely from casual exposures.

Title: Re: Desensitization Programs in the US
Post by: booandbrimom on May 11, 2012, 12:03:46 PM
CM, if you didn't see this one, you'll find it fascinating:

http://allergynotes.blogspot.com/2012/04/oral-immunotherapy-oit-for-food-allergy.html

I love this blog!
Title: Re: Desensitization Programs in the US
Post by: CMdeux on May 11, 2012, 12:37:27 PM
 :yes:  Exactly:

Quote
There is a risk for unanticipated OIT reaction (not during buildup) when the patient has fever, viral infection, exercise, menses.
(emphasis mine; how often would one of those conditions be true for an adolescent?)

Quote
In a study of 19 patients on OIT for 33-70 months, OIT was stopped for 4 weeks: 11 remained tolerant to 5000 mg of PN.

That's actually a very disappointing statistic, even if that failure rate is 10-20% high due to small N.   That is a LONG time to be at maintenance or in treatment only to regress like that.    :-[
Title: Re: Desensitization Programs in the US
Post by: aggiedog on May 12, 2012, 11:13:50 AM
I just left a comment to Dr. Sampson's article in favor of OIT.

I know there are unknowns.  I know dd may need to take PN's for life.  I wasn't looking for a cure.  I was looking for a better day to day life with PA for her.

She and I both feel we achieved that goal.  When she asked what I was typing, and I told her, she was mortified.  "Why wouldn't you do it?  I am sooooo glad I did.  I love being able to do all these things now."  I know that a 9 year old is not going to understand the necessities of rigorous research or complexities of new medical treatments, but at the ultimate level of her life experiences, she will tell you any time you ask that this was the best thing that ever happened to her.  She still says the best day of her life was the day we started treatment.  This was an 8 hour day that involved a blood draw, more grape koolaid flavored doses of PN than she'd ever care for, and a shot of epi for a possible reaction at the last dose.  STILL her best.day.ever.

I understand it is totally possible to live a full, wonderful, adventurous life with FA's.  I also know it's a lot easier with the FA's no longer the main concern. 
Title: Re: Desensitization Programs in the US
Post by: hedgehog on May 12, 2012, 12:51:22 PM
Aggie, that's exactly how I feel :yes:

I don't consider DS's treatment a "cure" and I don't care that it's not.  The reality is that it makes his life better.  It gives him more options and less stress.  I'd said for years that if it was as simple as not eating peanuts, life would be so easy.  Well, now it is that simple.  He may have to eat 3 a day for the rest of his life for maintenance, but that's OK.  And it's not known whether this will last his whole life, but I certainly hope it does.

I honestly think that getting DS desensitized is the single best thing I have ever done for him in his life.
Title: Re: Desensitization Programs in the US
Post by: momma2boys on May 12, 2012, 03:23:43 PM
Oh, I would take ds for desensitization in a heartbeat. He comments often that he wishes he could do it.  Just to take that level of anxiety away from him would change his life.
Title: Re: Desensitization Programs in the US
Post by: Macabre on October 01, 2012, 06:46:08 PM
Raising
Title: Re: Desensitization Programs in the US -- OIT
Post by: ajasfolks2 on October 01, 2012, 07:22:13 PM
As with opening post, am looking at options as we look to move next spring/summer . . . perhaps to area where OIT or other potential studies/therapies available to our LTFA children.

Glad to see this re-raised.

Title: LIST of Licensed Immunologists offering food allergy desensitization
Post by: ajasfolks2 on January 04, 2013, 01:15:32 PM
Do we have a dedicated "list" going here already in a MAIN thread?

It would be nice to have this here and allow folks to contribute doc/practice names and info, but still remain anonymous if wish.





Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: hedgehog on January 04, 2013, 02:03:18 PM
This is where DS went:

http://www.nefoodallergy.org/

And, might I add, Dr. Mendelson is terrific .
Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: CMdeux on January 04, 2013, 04:17:15 PM
We had a list like this at one time-- I think SoupToNuts (?) started it?

Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: GoingNuts on January 05, 2013, 07:40:46 AM
Good to know, HH.  A friend who lives near Stamford just emailed me about them this week, asking if I knew anything about them.  She wants to take her 17 y.o. DS there for desensitization.
Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: hedgehog on January 05, 2013, 08:32:39 AM
If you would like to give your Friend my contact info, pm me.
Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: Macabre on January 05, 2013, 09:45:23 AM
Can we merge threads with the one we have? It's already 5pp long.

Desensitization Programs in the US -- OIT

Title: Re: Desensitization Programs in the US -- OIT
Post by: Macabre on January 05, 2013, 09:46:54 AM
bump
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on January 05, 2013, 09:50:46 AM
It's timely that ajas brought this up.  I was planning to, because yesterday over my lunch break I made an appointment for DS with Dr. Mary, and we got in in just a few weeks!! She had a cancellation.  It's about 3 hours away, but we used to travel that far to see Wesley Burks at Duke.

Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: GoingNuts on January 05, 2013, 12:31:45 PM
Thanks Hedgie - that's very kind!
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on January 05, 2013, 03:43:02 PM
Wanting to esp get updated info for northern Virginia as well as Maryland . . .

Thanks for bumping.  Brain could not recall the thread title . . .

Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: CMdeux on January 05, 2013, 11:15:27 PM
Can we merge threads with the one we have? It's already 5pp long.

Desensitization Programs in the US -- OIT


Ajas?


Any reason to keep them distinct?
Title: Re: LIST of Licensed Immunologists offering food allergy desensitization
Post by: ajasfolks2 on January 07, 2013, 07:15:54 AM
Please merge -- I would have done it myself, but am too rusty on how-to and didn't want to goof it up.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on January 07, 2013, 01:47:16 PM
Wondering where Dr. Robert Wood is on OIT these days.

In 2010 he was on board with the "not ready for primetime" thinking as to OIT.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904630/

Now?  Anyone know?

Wondering how his views might affect the list of providers for OIT in the NoVa and Maryland areas?

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on January 10, 2013, 05:28:55 PM
ajas--call Scott Commins at UVA. He was doing a trial that we ultimately weren't a part of because they changed the level to 15.  And, um, we moved.  They enroll 10 kids at a time. You just pay for gas to Cville.

His trial is based on Burks'. While Burks was still at Duke (now he's at UNC Chapel Hill), Commins spent a great deal of time down there to learn the protocol.  Burks was the one who told us about the UVA trial.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: momtoAidenDeclan on January 10, 2013, 06:04:18 PM
Last I heard Woods was doing it as a study only - not sure of the criteria to "get in on it" but I know you had to be a patient there and at this point we don't have the time + we just lost TN and only have PN and am feeling pretty good about where we are at the moment....I am waiting for it to become "primetime"....if ds wanted me to push it I would.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on February 05, 2013, 12:38:36 PM
Dr. Wood video -- seems to be from 2011 -- at golf food allergy fundraiser:

Nathan Speaking at Food Allergy Benefit

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on February 27, 2013, 06:22:02 AM
Linking to our related discussion here in MAIN:

OIT may not produce lasting effects?
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on July 20, 2013, 06:31:07 PM
Might be double post, but wanted to link to other thread here.

Oral and sublingual peanut immunotherapy not for general use.

~ ~ ~

I'm hearing the "not ready for prime time" (verbatim) from allergists in the No Virginia area . . . wondering if this is their standard response until there is either greater acceptance in the allergist community and/or more failure in the OIT results?

Just wondering . . .

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on July 20, 2013, 06:34:03 PM
And linking to another thread here, but also possibly a repeat link into this thread.

Dd's OIT for PA, an update
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Katy on August 13, 2013, 08:07:36 PM
Dr. Whitney Molis in Des Moines, Iowa offers a good program @ Adult and Pediatric Allergy and Asthma. My 6yo PN daughter will be graduating this fall! She went from being afraid and hating her doses....to now she shells her own peanuts and takes them on her own. It's been a long road, but worth it. She is so thrilled that she gets to be a "regular kid" at school this year (her own words). No special tables, no special snacks, no missing out on birthday treats! This is why we are doing it. She is so happy. Our insurance also covers it!
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on August 22, 2013, 06:52:11 PM
Does SLIT cause Eosinophilic Esophagitis in some patients?
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on November 23, 2013, 11:14:48 PM
"Food Allergy - Twitter summary from 2013 #AAAAI meeting"
http://allergynotes.blogspot.com/2013/02/food-allergy-twitter-summary-from-2013.html

Quote
The amount of time on maintenance dose makes a big difference. Longer duration of OIT is more effective.


Quote
How long can maintenance dose be held before "sustained unresponsiveness" can be claimed? We still don't know.


Quote
Is tolerance the goal? Is it even possible in severely allergic patients? Might desensitization be sufficient? This is all up for discussion.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on November 24, 2013, 11:10:48 AM
That's interesting. I have to debrief with DH first but I think that was a strikingly similar theme from APCAACI conference but sometimes with SLIT instead of OIT, with some ACAAI presence in attendance. Outcomes were proposed starting at a younger age, for longer and with SLIT. He has to clean up the audio on the presentations but we'll post them all later via Dropbox for anyone interested to listen to.

I think this is somewhat of a subtle gamechanger for us that the longer term favorable outcomes should aim for a more deft touch in desensitization, starting with SLIT (possibly SCIT) for environmental allergens at least. I'm not sure we'd ever go for fast-tracked MFA OIT with DS2.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on November 25, 2013, 02:07:43 PM
That's what I'm getting out of things, too, TT-- that there may be distinct etiology in patient subpopulations, and that outcomes depend heavily on which patient subpopulation the person is a member of, ultimately...

which is why rush-OIT may just not be ready for roll-out to general clinical practice.

Maybe SLIT isn't either...  {sigh} 

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on November 25, 2013, 02:44:22 PM
Yes, but I'd like to have this conversation again after I post some audio and more papers re: the integrative theme of the AP region congress this month. The more the 'picture' develops in context the more compelling I find the approach that allergic disease worldwide is epidemic, and at its root-level mechanism needs to be attacked and torn for a cure for food anaphylaxis (amongst other allergic diseases)--as oversimplistic as that is from Capt. Obvious Me here, but in the meantime we can look at what is related and successfully mediated and treatable. In a sense, it's truly an approach you had before the assorted allergy congresses have reached consensus on, IMHO.

I see less as a 'peanut allergy' first world/industrialized nation problem and more as a global problem presenting differently amongst the world's population. Where I feel the greatest contextual revision is what food allergy and anaphylaxis means and whether we concentrate root-level at allergic disease, or attack the food allergy itself, or look at the model of allergic disease per individual and environment as a whole with the goal of maximim desensitization to possibly alter the allergic march starting from a younger age rather than forcing tolerance of individual foods.

The accuracy of reporting allergic responses varies so much between cultures and definitions. In brief so I won't be late to an appt I think USA overreports on 'food allergy' because it is conflated with fad diets, artisan foods, health improvement as a form of conspicuous consumption. In Asia (and I'm generalizing like mad, I know) it's far underreported, unacknowledged, likely vastly undertreated and good food trumps fad diets in regard to conspicuous consumption. An IgE-mediated allergy or rhinitis is more likely to be blown off, attributed to something else, self-diagnosed as something else, assumed it's transitory, and then there's the reality that they have as a population a very different of allergens. In that sense yes, peanut is OUR problem and that does make a world of difference... but, this assumption we were building as a whole that it's only a phenomenon in USA, Australia, UK, I think that's done. Bunk. There are epidemic levels of allergic disease in the AP region but it presents differently therefore the approach is different. At the end of the day to bring it all back to what is in common are the rapid increase of allergic disease in further generations and the rate of sensitization.

Someone let me know when I sound off my rocker. DH and I are going through the material at home.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: hedgehog on December 26, 2013, 09:08:06 AM
Just posted about this in WAYDT thread, but wanted to put it here as well, in case anyone wants more info.  My nephew's fiancée just started a desensitization study for PA adults in Boston. She is being paid for participating.  It is for adults only, and she said tey are still looking for participants.  There is a chance of being put in the placebo group, but those people will get the real treatment after they are done with te placebo. If anyone is interested in participating, I can get more info to pass along.  Just pm me if you are interested. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on December 28, 2013, 09:48:21 AM
DS sees Dr. Mary Morris in La Crosse. She has been doing slow SLIT for environmentals and food for years and years and has seen very good outcomes. Her father had the practice before and did environmentals.

It is very slow--at least four years. The goal is not consumption but a tolerance to accidental exposure. I am good with that.

I am going to start it in January. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on December 29, 2013, 11:21:42 AM
Do you think she'd consult with another allergist? Namely mine we're going to ask him to talk to other allergists performing long term SLIT for DS2.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on December 29, 2013, 01:31:40 PM
I will be happy to ask her. I'll PM you before I go to my appt mid-January.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on December 29, 2013, 01:34:16 PM
Thank you.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on January 13, 2014, 10:21:27 AM
oral treatment for peanut allergy, is it prime time?


peanut allergy cure in uk dr clarke.


Oral desensitization for milk allergy loses effectiveness over time


Can True Tolerance be Achieve in FA Patients?


NE Food Allergy Treatment Center claims a 95% success rate


Administration of a probiotic with peanut oral immunotherapy: A randomized trial





Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on February 02, 2014, 12:08:06 PM
"Safety and feasibility of oral immunotherapy to multiple allergens for food allergy"
http://www.ncbi.nlm.nih.gov/pubmed/24428859


Quote
Preliminary data show oral immunotherapy using multiple food allergens simultaneously to be feasible and relatively safe when performed in a hospital setting with trained personnel.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on February 07, 2014, 07:10:11 PM
ooh, this looks really interesting!


"Blood Test Might Help Tell When Peanut Allergy Is Gone: Study"
http://www.medicinenet.com/script/main/art.asp?articlekey=176499&utm_content=buffer149b1&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Quote
Our new finding can help us try to determine whether, for the long term, someone's allergy has truly been shut off so people can eat ad lib.


Quote
Nadeau said this test might one day help doctors in deciding whether a person "can safely go off of immunotherapy, or if they need to continue to eat the food every day."
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 01, 2014, 04:59:45 PM
http://multiplefoodallergyhelp.com/?p=2137

Quote
James Tarbox, MD @Mjj289 · 2h ago
#AAAAI 98% have a reaction occur during oral immunotherapy;10% at home, 4% needed epi


Quote
Priya Bansal, MD @Allergygal1 · 2h ago
5-20% of patients on oral immunotherapy have been going on to develop ‪#‎eosinophilic‬ esophagitis. #AAAAI


Quote
Dr. Dave Stukus @AllergyKidsDoc Feb 28
Only 35% who were successfully desensitized passed an oral challenge after 3 mos of stopping daily peanut#foodallergy #AAAAI
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on March 01, 2014, 05:58:20 PM
NE is now taking many types of insurance. 

We are strongly considering doing it. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on March 02, 2014, 11:40:56 AM
Regarding the stat that only 35% passed a challenge 3 mos after stopping their dose - I'm ok with that.  Meaning, I'm ok with dd taking a dose of PB daily for as long as she wants to.  Maybe FA's are like diabetes, or hypertension.  Some conditions don't have cures but they certainly have methods of managing them that keeps you healthy and safe.  Obviously, I'd love for her to be cured and rid of her PA forever, but if the next best thing is something that keeps her safe from accidental exposure that would be life threatening, then so be it.

If, at some point, she decides she'd rather stop the dosing and just live a life of avoidance, that will be her decision (and depending on her age, with more or less input from us.)  She still gladly takes her PB every day, because she remembers the fear and exclusion she lived with prior to OIT. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on March 02, 2014, 11:50:48 AM
Absolutely-- the only troubling thing is the (apparently) high percentage of patients who can't seem to establish a stable maintenance dose.  That's not to say that nobody can-- just that it's not yet clear exactly what separates those who CAN from those who CAN'T, if there is even such a clear distinction between them.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 04, 2014, 11:10:23 AM
"Prolonged Avoidance of Peanuts after Peanut Oral Immunotherapy May Reverse Its Effects"
http://annualmeeting.aaaai.org/UserFiles/file/ProlongedAvoidanceofPeanutsafterOralImmunotherapy.pdf

Quote
The 20 subjects in the study all passed the food challenge, but the results of the second food challenge differed between the group who avoided peanut for one month and the group who avoided it for three months. Of the subjects that avoided peanut for one month following the first food challenge, 16 of 16 passed the second food challenge. However, only one of four subjects who avoided peanut for three months passed the second food challenge.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 05, 2014, 07:19:38 AM
"Safety Of Pediatric Peanut Oral Immunotherapy Is Complicated By High Adverse Event Rates"
Yamini Virkud, MD, MA, , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper11185.html

Quote
Symptom diaries showed 54% of subjects received treatment at home for likely related events at some point during OIT, 53% with antihistamines, 18% with albuterol, 9% with epinephrine, and 15% had an emergency room visit.  Over the course of OIT, 37% of subjects should have received epinephrine based on symptom severity yet were not given any.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 05, 2014, 07:34:26 AM
"Course and Outcome Of Patients With Asthma During Oral Immunotherapy To Cow's Milk Protein"
Arnon Elizur, MD, , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper12009.html

Quote
Patients with asthma experience more adverse reactions and are less likely to reach full desensitization, but most reach a protective dose during milk-OIT.


---------

"Efficacy and safety of oral desensitization in children with cow's milk allergy according to their serum specific IgE level"
http://www.annallergy.org/article/PIIS108112061300046X/abstract?rss=yes&buffer_share=47019&utm_source=buffer

---------

"Clinical predictors for favorable outcomes in an oral immunotherapy program for IgE-mediated cow's milk allergy"
http://tinyurl.com/k7cysh7

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 05, 2014, 07:37:40 AM
"B-Fahf-2 Pretreatment Reduces OIT Adverse Reactions and Improves Outcomes In a Murine Model Of Multiple Nut Allergy"
Xiu-Min Li, MD, , , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper12602.html

Quote
Conclusions: BFAHF-2 pretreatment reduced adverse reactions during OIT, and produced greater post-OIT protection and a beneficial immunregulation. Addition of BFAHF-2 to an OIT regimen for human food allergy may improve its safety and efficacy.


----------------

"Special Report: Top Research from the 2014 AAAAI Meeting"
http://allergicliving.com/index.php/2014/03/18/special-report-top-research-from-the-2014-aaaai-meeting/

----------------

"Assessing the efficacy of oral immunotherapy for the desensitisation of peanut allergy in children (STOP II): a phase 2 randomised controlled trial"
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62301-6/abstract?utm_content=buffer2f347&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on March 05, 2014, 08:42:50 AM
"Safety Of Pediatric Peanut Oral Immunotherapy Is Complicated By High Adverse Event Rates"
Yamini Virkud, MD, MA, , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper11185.html

Quote
Symptom diaries showed 54% of subjects received treatment at home for likely related events at some point during OIT, 53% with antihistamines, 18% with albuterol, 9% with epinephrine, and 15% had an emergency room visit.  Over the course of OIT, 37% of subjects should have received epinephrine based on symptom severity yet were not given any.


WOW.


Yeah, I'd say that vindicates the Mount Sinai position on this, at least for now.   :-/
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on March 05, 2014, 11:02:30 AM
"B-Fahf-2 Pretreatment Reduces OIT Adverse Reactions and Improves Outcomes In a Murine Model Of Multiple Nut Allergy"
Xiu-Min Li, MD, , , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper12602.html

Quote
Conclusions: BFAHF-2 pretreatment reduced adverse reactions during OIT, and produced greater post-OIT protection and a beneficial immunregulation. Addition of BFAHF-2 to an OIT regimen for human food allergy may improve its safety and efficacy.

That is worded with incredible care, consistent with some of the thought from the pan-Asia allergy congress that it may be limited to symptom control. Not to take away its efficacy of safety profile.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on March 25, 2014, 12:06:33 PM
"6 New Frontiers in Food Allergy Treatment"
http://www.medpagetoday.com/AllergyImmunology/Allergy/44840?xid=nl_mpt_DHE_2014-03-20

Quote
What's next in food allergy immunotherapy?


Quote
Wood laid out six new frontiers for the field


-----------

"State of the art on food allergen immunotherapy: Oral, sublingual, and epicutaneous."
http://tinyurl.com/mct29zw

Quote
Here we review recent progress and areas of concern for the role of these forms of immunotherapy as an emerging treatment for food allergy.


-----------

Articles tweeted by A Russell BSN RN AEC
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on April 03, 2014, 11:18:19 AM
http://asthmaallergieschildren.com/2014/04/01/compliance-challenges-for-the-next-generation-of-food-allergy-treatments/

Quote
I think we’re about to enter a new dimension of compliance issues because of burgeoning research into treating food-allergies, whether through desensitization—oral immunotherapy (OIT)—or immune modulation via the traditional Chinese medicine-based treatments of Dr. Xiu-Min Li.


I think this is true.

This issue is very complicated and not easily addressed.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on April 03, 2014, 11:50:19 AM
I have no idea why TCM is the darling of medical speculation in America. FAHF is hardly a blip on the radar across Asia. We know because we went to the 2013 conference.

Compliance issues are a problem even with conventional treatments, which are frontline treatments by allergists across nations on the Asian continent and various surrounding "Pacific Rim" nations. Therefore it's based on populations' ability to commit to any compliance that would need a foundation of education and support.

I don't know who this guy is but I've got less than zero confidence in anything he writes about Dr. Li, TCM, and FAHF. He's welcome to follow the trail I've brought to FAS in terms of resources of allergy, asthma and atopy from conferences and peer reviewed journals from mainland China, Hong Kong, Taiwan, Japan, Singapore, and also pharmacognosy efforts and challenges between sourcing from China to our FDA, staffed by highly specialized persons whose professional backgrounds include high level pharmacognosy from the biggest and best mainland Chinese institutions. People who are also on the shortlist on international circles regarding FAHF. It's all here for him to broaden his scope starting with the 2010 symposium for pharmacognosy, then the 2013 allergy congress.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on April 03, 2014, 12:14:17 PM
 When the defensive anecdata of second hand experience piles high you'll be able to recognize concession. It will always begin and end with "My wife/friend/colleague is Asian/Chinese/other ethnicity..." or something about self-study TCM and challenges to disprove a negative regarding not truly understanding all that's out there. Sure, let's start with what we do know which I banked here at FAS. I paid good money for a congress that required 20k kilometer international travel, but I made sure all the open access papers were here as a follow up. DH and I merely have context based on attendance and talking to the docs, researchers and journal editors. The fruit of the effort is at anyone's fingertips to review first hand.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on April 03, 2014, 12:23:21 PM
TT, I know nothing about this subject & you know I  :heart: and respect you.

A lot of people wrote good reviews:

Jessica Martin, Food Allergy Sleuth
Anne F. Russell, BSN, RN, AE-C
Gwen Smith, editor-in-chief, Allergic Living
Susan Weissman, author of Feeding Eden
Caroline Moassessi, gratefulfoodie.com
Dr. Arnold I. Levinson Emeritus Professor of Medicine, Perelman School of Medicine
foreword by John Lehr, CEO of FARE

Hasn't he met with Dr. Li?  Have you spoken with her about how she feels (not that you should post that here) ... just for yourself.

I'm not endorsing the book.  I'm not qualified to judge it.

 :hiding:

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on April 03, 2014, 12:56:14 PM
Endorsing what? His amazing knowledge of Chinese medicine? I would be perplexed and vexed that if by talking to one doctor, the same one I saw, that he's become a more trusted source than a host of allergists in Asia serving some of the largest populations globally and also putting out major discovery and research contributions.

Maybe he's a crack biographer. No argument from me there. An expert on pharmacognosy? Based on what? Perhaps Dr. Li is the most prominent name in USA, but none of this is center stage in Asian research, nor is it of great interest for research. I greatly respect and trust Dr. Li, the very reason I put myself in her care. I am hopeful that more discovery comes out. But when you expand the scope and look at native populations and the body of research it occupies a very different point on a continuum.

Rather than giving it the frame of mystery and magic of TCM because we're America and therefore Americans supposedly can't understand it truly I'd rather see it as a region-specific population answer because our group of allergens and how allergic disease manifest in America might benefit more from FAHF in concert with OIT.

FAHF is TCM but not all pharmacognosy is FAHF and as far as implementing TCM into large population treatment with proven efficacy and interest, not the case in Asia although joint US-Asia symposiums in China on the topic of FAHF began in 2010. Not a whiff of it at the largest congress in Asia 2014.

The problem isn't whether or not Dr. Li is talking to him. The problem is scientific. We need replication in different populations and if the population to which TCM is native is different in manifestations, has not seen the value of this one formula and has scant research on other formulae (see congress papers), then the argument becomes one here of ethnicity, technology, perceived belief on culture, pretty much anything that does nothing than get further away from the science.

She is a great source--here in USA. When she is treated as the sole source globally by others the narrative and belief system get at best myopic.

No one needs to respect my opinion on it. If anything I'd rather they read all the credible resources I've gathered on FAS to expand the scope and gain a stable, realistic perspective rather than flowery orientalist philosophical entries such as the 'resource' I've seen him blog about.

Flat out I don't consider him a credible source. The data will bear out efficacy, mechanisms and safety in the long run. For that we're on the right track. Because FAHF seems to be a safe and effective symptom controller its role may be one where it assists and raises the success and safety of long term OIT. My husband asked Dr. Li via email directly years ago when I first established with her. She's Mt. Sinai and our kids saw Sicherer. Having used pharmacognosy in the past it's a normal part of our lives and our cultural perspective of medicine. However, what it's short on is mechanism and lack of any known effect on sensitization or root level allergic disease effect.

The best guess of prominent researchers from around the Australasian nations was no data on mechanisms strongly suggests it's a symptom controller. In Taiwan and Hong Kong there are other pharmacognosy formulae under research. But the biggest front of discovery remains anti-IgE with the same researcher who discovered Xolair working on the next generation there.

But no, I have to keep reading garbage about some guy's wife who is Chinese get him turtle blood while dining out then navel gaze how much 'we' don't know about Chinese medicine. That's where the divide is: people who are wanting to consider the validity but want to treat it as any other medical answer (that includes me, the FDA, most scientists Asian or not and Dr. Li herself), and people who want it to be 'other' which looks no different than willful ignorance.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on April 03, 2014, 01:13:17 PM
Am I missing any relevant links?

2013 APCAACI conference

Asia Pacific Allergy Open Access papers

-------------------------

ETA:

I just wanted to add that I personally have learned a lot from him & I think the asthma/allergy website has some excellent info ...... the book / that topic - it's not really an area that I know much about or am too interested in - so I'm not going to judge without reading / knowing more about it.

We all have our own opinions here and that is ok.  For a critical review, I personally would tend to use softer language so as to not hurt feelings more than necessary, but again, I support FAS members being able to say what they want, how they want, within the limits of board rules. 

I suspect that if I read both the book & TT's resources she brought over, I'd learn a lot from both.




Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: twinturbo on April 03, 2014, 01:21:07 PM
Some isolated posts that I will have to dig up, and some of the asthma and allergy resources from Korea, Taiwan and Singapore. You're good at clearinghouse threads I could feed you the stream of what I have.  I have some slides and recorded presentations I haven't posted yet. Am absolutely willing to share but I have not had time to clean up and put in drop box.

Please, anyone who wants a perspective on populations, manifestations of allergic disease, epigenetics and whatever else I am forgetting at the moment amongst Asian populations--read what's there. If I get the chance I'll look for my other posts on the 2010 symposium and the bio of FDA personnel for pharmacognosy.

The one person I would go to who isn't Mt Sinai personnel on FAHF is booandbrimom because she's been through the protocols in clinical trial. Her blog and experiences I would trust.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on May 22, 2014, 04:57:45 PM
Tweeted by @Aller_MD

------------------------

"Oral Immunotherapy for Treatment of Immunoglobulin E-Mediated Food Allergy: The Transition to Clinical Practice"

http://online.liebertpub.com/doi/abs/10.1089/ped.2014.0332?utm_content=bufferb6e5d&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on July 08, 2014, 06:36:19 PM
The one person I would go to who isn't Mt Sinai personnel on FAHF is booandbrimom because she's been through the protocols in clinical trial. Her blog and experiences I would trust.



"The Food Allergy Herbal Formula-2 (FAHF-2) Laundry List"

http://foodallergybitch.blogspot.com/2013/08/the-food-allergy-herbal-formula-2-fahf.html


Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on July 08, 2014, 06:36:56 PM
You're good at clearinghouse threads I could feed you the stream of what I have.  I have some slides and recorded presentations I haven't posted yet. Am absolutely willing to share but I have not had time to clean up and put in drop box.



TT - I know you're not posting here anymore, but you have my contact info if you'd like me to add anything to this thread.   :heart:

------------------------------------------------


Just food for thought ... I'm not going to dive too deeply into this topic.


"Traditional Chinese herbalism at the Cleveland Clinic? What happened to science-based medicine?"
http://www.sciencebasedmedicine.org/traditional-chinese-herbalism-at-the-cleveland-clinic-what-happened-to-science-based-medicine/

Quote
herbal medicine is among the most plausible of “complementary and alternative medicine” (CAM) or “integrative medicine” for the simple reason that, for an herb to have a medical effect, there must be a chemical (or chemicals) in it that have pharmacological activity. In other words, there have to be drugs in them thar plants! That’s why pharmaceutical companies and the NIH are so interested in screening natural compounds for chemical properties and pharmaceutical activities that might indicate that they could function as useful drugs.


-------------

"The Trojan Horse called Integrative Medicine arrives at another medical school"
http://www.sciencebasedmedicine.org/the-trojan-horse-called-integrative-medicine-arrives-at-another-medical-school/

Quote
Traditional Chinese Medicine (TCM) is a collection of beliefs and practices that was accurately described in the 1930′s by a Chinese medical school dean as a “weird medley of philosophy, religion, superstition, magic, alchemy, astrology, feng shui, divination, sorcery, demonology and quackery.”


-------------

"The infiltration of complementary and alternative medicine (CAM) and “integrative medicine” into academia"
http://www.sciencebasedmedicine.org/the-infiltration-of-cam-and-integrative-medicine-into-academia/

Quote
Uncritically introducing therapies that are by their very nature unscientific, therapies like homeopathy, reiki, reflexology, and “energy medicine” taints the entire scientific enterprise at these institutions. Worse, offering such therapies outside the context of a clinical trial in academic medical centers gives the patina of scientific credibility to therapies that have not earned it, promoting the impression that science supports their efficacy.


-------------

"Why we’re not ready to embrace Eastern medicine"
http://www.kevinmd.com/blog/2014/07/ready-embrace-eastern-medicine.html

Quote
Dr. Katz argued — convincingly, I might add — that some instances where “alternative” medicines are criticized for lack of sufficient supporting evidence are more attributable to the profit motive driving drug development than to any lack of efficacy.


Quote
Islamic medicine is unlikely to be included in any “Eastern medicine revolution” that may be underway.


--

"The false dilemma of David Katz: Abandon patients or abandon science"
http://www.sciencebasedmedicine.org/false-dilemma-of-david-katz/

Quote
Dr. David L. Katz is apparently unhappy with me.



Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on July 08, 2014, 06:42:54 PM
Current thoughts on clinical trials and other treatments (Dr. Li or Stanford OIT

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on July 09, 2014, 01:55:51 PM
Tweeted by @AllergieVoeding

"Multiple-allergen oral immunotherapy improves quality of life in caregivers of food-allergic pediatric subjects."
http://www.ncbi.nlm.nih.gov/pubmed/24860608?dopt=Abstract&utm_source=dlvr.it&utm_medium=twitter

Quote
CONCLUSION:
Multi-allergen OIT with or without omalizumab leads to improvement in caregiver HRQL, suggesting that mOIT can help relieve the psychosocial and economic burden FA imposes on caregivers of food-allergic children.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on August 14, 2014, 06:47:41 PM
Tweeted by @allergyPhD


"Chinese Herbs for Food Allergy: 2 Success Stories"
http://allergicliving.com/2014/03/18/chinese-herbs-for-food-allergy-2-success-stories/
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on August 20, 2014, 04:15:18 PM
Tweeted by @Aller_MD


"OIT triggered life-threatening anaphylaxis in teenagers with asthma"
http://www.healio.com/allergy-immunology/immunotherapy/news/online/%7B2771a396-3f75-4c7c-b51a-11cb9a99eddf%7D/oit-triggered-life-threatening-anaphylaxis-in-teenagers-with-asthma

Quote
Teenagers with persistent asthma, high milk- or egg-specific IgE levels and noncompliant behavior were a high-risk group for oral immunotherapy and experienced life-threatening reactions to the treatment, according to recent study results.



Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on August 31, 2014, 10:32:57 AM
Tweeted by @Aller_MD

"Texas Children's Hospital begins peanut immunotherapy study"

http://tinyurl.com/k7l8jr4

Quote
Researchers at Texas Children’s Hospital and Baylor College of Medicine have begun a peanut immunotherapy trial to investigate the ability of peanut allergic children to take peanut flour.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 31, 2014, 07:00:00 PM
Funny how times change.  One of the big wigs in that TCH department flat out told us that OIT was not safe or effective and he did not recommend it for our dd.

And we toddled off to Dallas anyways...no regrets.  ;)

Glad they are coming around on it.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on September 14, 2014, 11:30:55 PM
Tweeted by @AllergieVoeding


"Relation between eosinophilic esophagitis and oral immunotherapy for food allergy: a systematic review with meta-analysis."

http://www.ncbi.nlm.nih.gov/pubmed/25216976?dopt=Abstract&utm_source=dlvr.it&utm_medium=twitter

Quote
New onset of EoE after OIT occurs in up to 2.7% of patients with IgE-mediated food allergy undergoing this treatment strategy. The limited data on the utility of allergen immunotherapy as a therapy for EoE prevent a recommendation for this treatment option.


Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: brownie on September 20, 2014, 07:59:05 AM
Looks like there is still no thought on who is prone to EoE?  This seems like the biggest risk to me.  IMO if he's going to react that readily and severely to the peanut, I would rather it was under a controlled situation.

OIT treatment is supposedly going to become available locally and I am going to attempt to get my oldest in.  I think he's a good candidate.  He is just turned 14, PA only, definitely anaphylactic, but has pulled out of his 3 known reactions without epinephrine.  Two occurred before diagnosis 12 years ago and the third 2 years ago due to a label mis-read and cross-contamination.  His RAST numbers have held around 5 for the last few years, down from 75 as a pre-schooler.  He has "outgrown" his asthma.

I won't consider my 11 year old yet though...severe asthma, numerous allergies (PA, TN, and beans).  Numbers over 100.
Brownie
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on October 08, 2014, 08:06:47 PM
Tweeted by @AllergieVoeding

"Peanut immunotherapy"
http://www.ctajournal.com/content/4/1/30

Quote
In summary, peanut immunotherapy presents an exciting, potentially disease-modifying treatment approach for peanut allergy, but is not yet recommended for routine clinical use and should not be attempted outside specialist allergy units.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on October 25, 2014, 11:29:40 AM
Tweeted by @joyclee

I can eat it
Taking a bite out of food allergies

http://stanmed.stanford.edu/2014fall/i-can-eat-it.html?utm_content=bufferdc87c&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Quote
How does OIT work — and why doesn’t it last without continuous exposure? Is it possible to understand at a molecular level what causes food allergies, and how OIT changes those processes?



Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on November 06, 2014, 08:44:45 AM
Cross-posting this thread link here as I want to be sure it is included in this discussion:
peanut immunotherapy 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on November 10, 2014, 09:59:28 PM
Tweeted by @DrAnneEllis

Quote
#ACAAI Burks: If kids are going to develop EoE as a consequence of OIT treatment usually see it in first weeks/months, not later
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on December 30, 2014, 12:05:59 PM
Tweeted by @WayneShreffler

Quote
More on why OIT is not Rx yet: Suppression of the immunologic response to peanut during OIT is often transient. dlvr.it/7yn55B



----------------


"Suppression of the immunologic response to peanut during immunotherapy is often transient."
http://www.ncbi.nlm.nih.gov/pubmed/25542883?dopt=Abstract&utm_source=dlvr.it&utm_medium=twitter

Quote
OIT and SLIT for peanut allergy induce rapid suppression of basophil effector functions, DC activation, and TH2 cytokine responses during the initial phases of immunotherapy in an antigen-nonspecific manner. Although there was some interindividual variation, in many patients suppression appeared to be temporary.




Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: guess on December 30, 2014, 12:46:13 PM
Moving the goal post from full on tolerance to blunting reactions and threshold stretching seems the smarter objective until we understand what OIT desensitization looks like both longitudinal and cross-sectional.  Maybe if you're in a position where you're only one single allergen away from the American dream full on OIT becomes the brass ring to grab but if you've got even a degree of medical complexity either in the allergic individual or throughout the family then smaller facets of life improvement appear in greater relief.  In other words I'd like to see more research towards SLIT at younger ages than the OIT merry-go-round that spits out the same Magic 8 Ball answers. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on December 30, 2014, 02:02:35 PM
I don't know if I've posted it upstream, but the SLIT DS and I are doing at La Crosse has a very different goal than the SLIT and OIT studies I've seen:  to raise the threshold/reduce the risk from accidental ingestion. Not ingestion itself. The length of treatment is also different: four years.

This works for us.  It would be so cool just to eat a sandwich out or not to have to avoid anything grilled.  Or to be able to go to a Mexican restaurant and eat tortilla chips even if they've been fried in the same oil as shrimp (which is so often the case).

And of course, for DS, as he goes to college in two years--well, the cool factor is just pretty self-evident. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on February 07, 2015, 09:12:10 AM
Tweeted by @FoodAllergyNCBI


"Sublingual immunotherapy for peanut allergy: Long-term follow-up of a randomized multicenter trial."

Burks AW, Wood RA, Jones SM, Sicherer SH, Fleischer DM, Scurlock AM, Vickery BP, Liu AH, Henning AK, Lindblad R, Dawson P, Plaut M, Sampson HA; for the Consortium of Food Allergy Research (CoFAR).

http://www.ncbi.nlm.nih.gov/pubmed/25656999?dopt=Abstract&utm_source=dlvr.it&utm_medium=twitter

Quote
Peanut SLIT induced a modest level of desensitization, decreased immunologic activity over 3 years in responders, and had an excellent long-term safety profile. However, most patients discontinued therapy by the end of year 3, and only 10.8% of subjects achieved sustained unresponsiveness.



Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on February 23, 2015, 09:24:29 PM
Tweeted by @IgECPD


Quote
Julie Wang presenting data on Chinese Herbal Medicine (FAHF-5) as a treatment for Food Allergy #AAAAI15

&

Quote
Wang: 17% success in the treatment group and 45% in the placebo group. Yes you read that correctly...this was a 'negative' study #AAAAI15

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on May 23, 2015, 09:21:36 AM
How does everyone feel on OIT on the priority list of food allergy organizations and your personal priority list? Specifically OIT, not SCIT or SLIT. This might be more of a note to myself to make a poll later.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on May 29, 2015, 06:12:43 PM
Not ignoring you NR ... don't have much of an opinion.


-----------------



"AAAAI 2015 Pro-Con Session: Is OIT Ready for Prime Time?"
http://www.amazingandatopic.com/2015_04_01_archive.html



Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on May 31, 2015, 07:45:57 AM
I don't like the idea that there has to be a priority list and hope that FA organizations can take on top FA issues without doing so at the expense of other FA issues.

As for OIT, from what is happening at the New England Food Allergy Treatment Center and apparently the other places they share research and information with, it seems highly successful with a success rate, close to 95% getting to 3 or more peanuts a day.  Their new goal is to get people to 10 peanuts a day.  Apparently they are finding good success at passing full challenges after 6-12 months at that level. 

For us personally this is 2nd only to day to day avoidance of things that can cause him to react in importance. Long term it is the most important thing regarding his FAs.  He already does not have to sit at the peanut/nut-free table, can eat lots of things he couldn't eat before, and is getting treatment for another FA now.  His very long list of allergens is changing and the future looks very bright.  I don't know if he can ever be FA free but already it is a huge improvement in quality of life.   

Seeing as it seems to have a high success rate I think it makes sense for FA organizations to focus on it.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on May 31, 2015, 09:46:57 AM
FARE invested in a company that produces OIT materials -- pharmaceutical grade to guarantee no cross contact, and potency for lack of better word. The main product is AR101 or CODIT. In their financial disclosures, it's listed as "ownership interest" in Allergen Research Corporation, renamed aimmune Therapeutics.

I understand they had quite a few large donors who may have wanted this specific action, and that they worked with venture capitalists to launch research for AR101 through their CODIT system. The only portion that surprises me is that they didn't announce with any fanfare, or make a presentation during the FARE conference. I would have loved the opportunity to learn more about it.

I don't know about the pharmaceutical industry so I don't know how meaningful it is that this is a patented peanut OIT delivery. I think that means a closer move to national roll out? That makes sense to evolve the treatment landscape from the existing patchwork. The longitudinal and cross-sectional data doesn't seem to support peanut OIT.

http://www.aimmune.com/about/history/

Quote
We aim to fulfill the 2011 shared vision of establishing a standardized OIT product and protocol, to be made available in allergists’ offices nationwide and beyond, so that people with food allergies can live with less fear and more safety.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on May 31, 2015, 11:16:27 AM
This is the first I am hearing of that.  They use actual food at New England Food Allergy Treatment Center. 

Did you see that survey that came around, I think it was here, asking what we would think about doing a desensitization treatment at home on children under age 5 and it was asking about cost and other factors involved.  I wonder if that was related.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on May 31, 2015, 11:58:55 AM
Did I say that I didn't have an opinion?

Sigh.

Given what NR posted, seems like another possible conflict of interest at FARE?

I don't like it.

Speaking in general terms here ... treatment recs should be based on science & evidence ... not patient org financial interest ... again, not speaking specifically about this situation.

When research is funded, it shouldn't be done with the intention of rolling out a specific treatment ... it should be to find the truth about whether the treatment is safe & effective.  Research should be as objective & transparent as possible, bias minimized.

-------------------



ETA:


http://www.amazingandatopic.com/2015_04_01_archive.html

Quote
“How can we even argue that we should be moving forward with a potentially dangerous treatment before we've done the usual studies that would be required to bring a new treatment to the prime time. [In fact], the only reason we can do it, is because the treatment is available in the grocery store. If this was a drug, it would be far from approval, far from use, and no one in this room would touch is in their practice, as it has not been adequately studied.”



YK, I've never met Dr. Wood, but I trust him ... I trust that he has patient best-interest at heart.

My personal opinion ... I do not always trust FARE's intentions.





Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on May 31, 2015, 12:18:58 PM
I don't either.

I also don't like that a food protein is being moved into monetizing position here with a PATENT-- no, no, no.

One reason why SCIT has been relatively affordable and available to hundreds of thousands of patients over the past six decades is that the extracts are NOT "patent" materials.

 :disappointed:

This is like patenting BRC genes-- I don't like that either-- because when you start making naturally-occurring nucleic acids, proteins, and the like someone's intellectual property, you are CONTROLLING HOW THEY CAN BE USED.  Even for research purposes.

My gosh I don't think that is a good thing here.  NO way.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on May 31, 2015, 12:31:43 PM
Makes me want to re-read FARE's charter and stated mission vs this investment.

I'm not quite sure what to think??

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on May 31, 2015, 01:06:37 PM
This comes to mind for me ... it may not be a perfect comparison ... but I think the FA community really needs a little self-reflection ...




Re: If you were an allergy researcher ...

"Stop Subsidizing Big Pharma"
[url]http://www.nytimes.com/2015/01/06/opinion/stop-subsidizing-big-pharma.html?smprod=nytcore-iphone&smid=nytcore-iphone-share[/url]

Quote
ROBERT J. BEALL, the president and chief executive of the Cystic Fibrosis Foundation, called his recent decision to sell the royalty rights to his organization’s research a “game changer.”

Quote
So far, there is no effort to extend government price controls to venture-philanthropy-derived research.



----------------------------------------------------



"Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern"
[url]http://www.nytimes.com/2014/11/19/business/for-cystic-fibrosis-foundation-venture-yields-windfall-in-hope-and-cash.html?_r=0[/url]

Quote
there is some concern that a profit motive could divert the organizations from their primary mission — helping patients — and create a conflict of interest.

Quote
Critics say that perhaps because a higher price means higher royalty payments, the foundation did not do enough to bring the cost down.




----------------------------------------------------


ETA
Aimmune, AR101 and CODIT: FARE






Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on May 31, 2015, 03:00:44 PM
I'm not comfortable with the investment in a private, for-profit company that would sell treatment back to us. At the very least I believe the ethical business decision here is to spin off that portion into its own company separate from the nonprofit organization. Yes, it would essentially dissolve the FAI-FAAN merger that resulted in FARE but despite their contracted external audit (which they consider "independent") giving the thumbs up.

The standardization of pharmaceutical grade allergens for OIT is great, at least theoretically. I'm uncomfortable that FARE as a nonprofit raised the venture capital for the for profit company. This also doesn't sit well with me; advocacy is for the individual's rights and protections. The statements of the CEO of this corporation with FARE investment should be repeated on FARE's website, not just ARC's (now Aimmune).

Quote
“When you look at statistics for the entire U.S. population, a food allergy reaction sends someone to the emergency room every three minutes,” said ARC CEO Bryan Walser, MD. “The constant vigilance required for allergen avoidance creates stress not just for the affected individuals and their families, but for whole communities trying to accommodate and protect the individuals. Treatment with OIT could be like using safety belts and having airbags in a car—we want it to be available and used to protect children and their families.”

I have to think on this a bit. It's a mixed bag.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on May 31, 2015, 03:47:05 PM
Hey FARE, does this not lead to a false sense of security?


Just had to say that. I am actually a fan of OIT and SLIT as far as I inderstand them, and I have had very serious conversations with a doctor about doing OIT but we are doing SLIT.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on June 09, 2015, 12:47:09 PM
Allergist Who’s Driven to Solve the “Whys” of Food Allergy
http://allergicliving.com/2015/06/09/allergist-whos-driven-to-solve-the-whys-of-food-allergy/


Quote
Contributing Editor Claire Gagné spoke to allergist Corinne Keet about her current research, her personal connection to the disease, and what it was like to cast doubt on the effectiveness of OIT.

Quote
I think it’s really important that these therapies are rigorously evaluated before being adopted in the community. These treatments are not low risk, and it’s essential that we understand the benefits and the risks.




Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on June 09, 2015, 01:31:50 PM
Something I'd like to add to the topic in general is benefit to the patient, not a therapy driven and marketed to alleviate collateral inconvenience to communities in which the afflicted individuals live in.  Sadly, depending how far in to the for profit pharm industry nonprofits are tied to OIT therapy are, this needs to be stated with absolute clarity.  We can't be sold on a singular leading therapy, or sold the patented therapy itself, by the same entities that purport to advocate for us.

As long as there continues to be some transparency, open sourcing and honest data it shouldn't be too much of an issue although it does create a more defined conflict of interest that should be addressed between detailed expenditures and solicitation for dues.  I will be watching that line if it is crossed and it will not be just as an 'allergy mom'.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on June 23, 2015, 03:55:30 PM
Tweeted by @CNNMoney


"Peanut allergy drug slated for 2018"
http://money.cnn.com/2015/06/23/news/companies/peanut-allergy-drug-patch/index.html?sr=twmoney0623peanutallergy230pstory


Quote
The drug -- called Viaskin Peanut





Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on July 31, 2015, 05:09:23 PM
In regard to OIT:

I want some honest data.

I want details on # of anaphylactic reactions (with or without Epi) BEFORE treatment as compared to # of same AFTER treatment.

I want hard numbers as to IgE and uKnow component and skin testing BEFORE treatment vs AFTER.

I want hard numbers as to GI issues and related BEFORE vs AFTER.

~ ~ ~

Is the quality of life "improvement" after just so subjective that it cannot ever be quantified?


Is OIT actually giving (some?) LTFA patients and/or parents a false sense of security?  {yes, I asked that.}

~ ~ ~

These questions and more after again recently seeing board certified allergist who still is among those stating OIT for general LTFA populaton is NOT READY FOR PRIME TIME.




Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on August 01, 2015, 01:01:38 PM
I think you could get answers to most if not all those questions if you called some of the places doing desensitization.  The place we are going claims something like a 95% success rate.  We feel the quality of life difference is enormous. They are taking surveys of patients in order to quantify it.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on August 01, 2015, 01:42:18 PM
I think ajas means to a depth never before undertaken including cross-sectional and longitudinal like it actually exists and matters, peer-reviewed, successfully replicated with consistent results for apples-to-apples comparison which is woefully missing under the amorphous term research.  Good data science isn't about numbers being generated, it's about whether it stands up to scrutiny and can defend its weaknesses.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on August 01, 2015, 03:49:48 PM
Exactly-- while a 95% success rate sounds really good-- and, um-- it IS-- is that truly of a cross-section of the allergic population?

Or do patients SELF-select out?  Are they (subtly) steered out by clinicians who have a gut sense of who isn't a good risk?

Because those kinds of details really, really matter. 

I mean, I understand that one may never truly get great answers to those questions-- because no patient (or parent) is going to stand for being in a control group that they can't opt out of-- or, for that matter, in an experimental one that they can't drop out of, either.

The drop-out rates in OIT studies were pretty interesting-- and the drop out rates were pretty significant in the experimental sides, every time.  About 10-20%.

It seems to work really, really well -- for some people.  And maybe not much if at all for other patients.  Thing is-- who is who?  How do physicians know?  Do they know?

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on August 02, 2015, 09:28:26 PM
The place where DS is going does not let anyone who had the most severe of anaphylaxis events do it.  People who were on life support, etc would be excluded.  No one is subtly steered out of it.  There are set guidelines for who they take and who they do not.

They are in close contact with other places doing desensitization, one in California in particular, and regularly compare results and are apparently getting the same results.

Again, you could call them and ask them about drop out rates, etc.  I'm sure they would be very open with you. 

It seems to work really well in there with the people they are doing it on and in the California clinic as well. 

If I had only read here and hadn't had a friend push me to look into it I wouldn't have dared to try it.  I called and talked to them and I'm so glad we are doing it.  It has made a giant difference for all of us in a very positive way.  I would not ever say it is for everyone and it is a big commitment and wouldn't work easily for everyone.  For example, kids who do sports and are very busy would have a hard time finding a time to take their daily dose.  Not showering one hour before and 2 hours after the dose and not exercising 2 hours after the dose can both be challenging.  Always having safe carbs on hand for him to take with his dose means thinking of that daily.  They may seem like small things but in a busy life they can be difficult to make sure happen every single day.  The location isn't all that close and we had to drive home late in traffic and that was a commitment, too. and not all insurance will pay for it so it could be cost-prohibitive. 

But I have felt it was very safe for DS.  I encourage anyone interested in it to call places offering it and ask them questions if you have questions.  Maybe their replies will make you feel it isn't for you or maybe they will make you feel it is. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on August 02, 2015, 09:30:20 PM
I feel and so does DS's allergist that not doing desensitization is also a risk.  DS has so many FAs and the average person with even just one FA has an accidental exposure once every maybe 5 years.  MFAs might make that accidental exposure more common.  Eventually he was going to accidentally eat peanuts and who knows what would have happened if we didn't do this.  It isn't as though not doing carries no risks. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 03, 2015, 07:46:18 AM
I know that the group that did dd's OIT uses her data for research.  At least, we signed releases to that effect, and they've made passing comments about "when we were presenting this at XXX."

Best I can do.  I do think if you called one of the groups doing it, they would be open with their results.  I had a long (almost an hour) discussion with one of the doctors before dd began. 

And I'll say it again, for my dd, it was life changing.  I know everybody is different, but for her, it was a hit out of the park.  And hopefully, her data can help other kids someday.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: hk on August 03, 2015, 08:45:21 AM
Our allergist told me last week that he will offer OIT for peanut starting next month and for multiple allergens in six months.  He said he could treat all of dd's allergens at the same time.   ???  At last year's appointment, he was pretty negative about OIT and he had previously told me to stay away from the Stanford trials as he thought the protocol was too aggressive and that they were not reporting or adequately treating some of the reactions.  I asked if he would follow a different protocol than Stanford and he said it would be about the same.  That seems like a pretty big change of opinion in one year.  This also coincides with the two older doctors in the practice retiring.  I had houseguests active right after this appointment so this is the first time I've had to even start thinking about the conversation. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Beach Girl on August 17, 2015, 12:01:33 AM
Lakeswimmer, I just emailed you to the email address in your profile.  I have some questions for you.  Thanks!
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on August 21, 2015, 07:09:53 AM
 
If I had only read here  . . . 


Speaking for myself, I have read EVERYTHING EVERYWHERE that I can get my eyes on.  (And I'm not sold.)

Given the history of the members here, I would doubt seriously that any of us ever only read here.   ;)


~ ~ ~
 
(ninja, you totally mean what I say . . . or is that say what I mean?   ;D  )

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on August 21, 2015, 12:09:50 PM
I couldn't say about us individually, ajas, but more towards who adheres to the wider terms of data science standards.  It's what helps us recognize word of mouth testimonials are great for trustworthy advertising but unfortunately not disciplined, significant findings that are safely and reliably generalized to the public. 

I believe where we are as a wider population is very aware of the possibilities of OIT but not nearly of its limitations specific to subsets of our population.  That's kind of the point of peer review, replicability and so forth; there is no one source that becomes truth.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on August 21, 2015, 12:30:52 PM
I guess what I'm trying to say is all of it is on the table, including word of mouth testimonials, community endorsements but to not recognize the difference between the former as distinct from clinical trials, studied subset populations noting their exclusions, methodologies, and measurements working towards reliable outcomes promotes medical gaps where informed consent declines and vulnerable populations can get left even further behind, or suffer from unintended consequences.

How many times have recommendations to introduce foods flip-flopped?  It's shifting sands at best in allergy.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 21, 2015, 12:37:59 PM
I understand what you're saying.  But I didn't want to wait for dd to get out of childhood before enough science had been done to prove it was completely safe/effective/etc for her specifically.

I looked at the risks of not doing it, and balanced them with the known risks for doing it.  Accidental exposure, limited experiences at camp/friends' houses, added stress of checking food at restaurants, difficulty traveling long distances vs reaction to a dose, eosinophilic esophagitis (both of which had small percentages), the possiblity she never gets to stop her PN daily dose, more unknowns

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on August 21, 2015, 12:56:29 PM
Forgive me, aggie, but I'm not seeing how your choice opposes the peer review process.  You made an informed choice, one that no one else is judging, but for those that actually need more data our needs can't be defined by yours.  That should be acceptable to everyone because we're each attending to our own needs by subset.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 21, 2015, 01:06:01 PM
Actually, I'm thinking we are saying the same thing.  I would have totally appreciated peer review, years of data, and the sure knowledge that what we did was the best for dd.  I simply did not want to wait the years it would take.  We did her OIT in 3rd grade.  I wanted her childhood to be as safe as I could make it, weighing what we knew at the time.

I so wish there was more, good research out there.  I think it is hard to get those types of projects off the ground.  Experimental medicine on children?  That aren't actively going to die if you don't do something (as opposed to cancer research.)

So first they build up lots of anecdotal experience, and smaller programs like my dd's.  I hope her experience leads to better research to help generations after her, I truly do.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ninjaroll on August 21, 2015, 01:20:37 PM
I'd have to disagree because much like CMdeux I must consider the skewing effect of exclusion criteria, and the lack of cross-section and longitude.  I could be wrong but I do believe she and I are of like mind that it's the lack of discipline in anecdotal experience that is expressly making OIT increasingly inaccessible to children in our subset.  And for another whole set of standard deviations from the mean, my children's inability due to developmental disability to cooperate with regimens as studied. 

The most I can say is that I do appreciate the net benefit for the subset of children that OIT seems to work the best for.  The rest of us not in that population, for now, will have to wait.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 21, 2015, 02:00:38 PM
I get it.  As a physician, though, so much of what I do is not backed by peer reviewed, double blind, placebo controlled science.  If I was limited to that, I'd have very little to offer my patients.  There is what is ideal, and there is reality.

I do hope they can do more research, find which antigenic sub groups respond better or worse to different treatments, and the other myriad of questions that surround FA's.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on August 23, 2015, 07:32:05 PM
I really appreciate your perspective, Aggie.  It's not that different from mine, I think-- difference was that our gut said one thing after looking at the knowns versus the unknowns, talking it over with our allergist and discussing DD's individual history, etc. etc.

And it wasn't what your family went with. 

:shrug:

COULD our DD have been desensitized successfully?  It's difficult to say, IMO.  Maybe.  But we already knew that we'd have to be prepared to "pay ANY price."  ANY price.  And I don't mean financially.

Apparently, egg desensitization came with the baggage of destabilizing her immune system such that she developed animal allergies, and with upped doses, her asthma has also worsened to the point that it's very definitely a major problem in her life now.  Could have been adolescence-- or it could have been tweaking her immune system.  We'll never know, but her history sure argues powerfully for the latter* in this instance.  Which is why we judged it to not be a good bet for her personally.

"Worse" isn't an option for peanut/treenuts-- or just staying alive will be so complex that being a functional, working adult isn't a real option.    SLIT, I think that there's a lot of data (now) to support, and the safety seems to be there.  I might well have been okay with that.  But OIT using an aggressive protocol and high doses... hmmm-- no.  DD is an outlier-- and outliers do need to be wary for a lot longer than most people when it comes to new medical treatments.  They may be outliers for reasons that matter a lot when it comes to mechanistic/molecular aspects of revolutionary treatment.  KWIM?  I tend to think that this probably IS fine for those who are below the most sensitive quartile of the normal distribution (in terms of reaction threshold/reactivity).  There's just so darned little right now to say who those people ARE who should not do this.  Is it those who are in the most sensitive 1%?  5%?  Those with the most severe reaction history?  Those with unstable reaction thresholds and asthma? Severe reactions to trace quantities (ppm or lower)?  Not clear-- but it seems likely that at least some of those people are poor risks.



*when she started allergy shots, her sensitivity to all of her food allergens worsened-- which would have been difficult to fathom, frankly-- and she "redeveloped" the milk allergy she'd outgrown.  At least it wasn't wheat-- but the effect has been nearly permanent, since she's been off of shots for 4y and still doesn't have normal milk tolerance back.  {sigh}
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: aggiedog on August 25, 2015, 06:26:47 AM
I get that, too, CM.  Fortunately, dd was only PA when we started and has never had asthma.  She is not one of the 1%, AFAIK.  I'll admit, she somehow developed a mild allergy to pecans and walnuts during the treatment.  From the OIT?  We'll never know, but it's definitely possible.

I would have not been willing to pay any price, not even close.  Your dd, and others, are indeed in a separate class.  It was a good decision for our family.  I would never assume it would be the best decision for all families.  I do hope her data, and the rest from her clinic, can be used in the future, to determine who is a good candidate and who isn't. 

As for OIT vs SLIT, I don't think there was anyone within driving distance doing SLIT when we did dd's OIT.  I would not have been against considering that instead, if it had been a real option.  As it was, we drove 4 hours each way, once a week for 5 months.  She missed every monday for most of 3rd grade. Also not ideal, but that was the trade off.  I know that's not in the same class as severe reactions by any means, but it was not a light decision even just based on time and money.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on November 06, 2015, 12:52:34 PM
Just wanted to be sure link to this Facebook group was in here for those wanting more details and discussion as to OIT:

Group is called .

Link to closed group is


Note:  not endorsing, just sharing the link.  Link removed by member.

Edited 4/3/2016 to remove link.  Given some of what has been observed for behavior and read as to posts in that group lately, I cannot in good conscience leave that link in this post.  Search for group via name, if you wish.  But the lack of balance in the discussions there and concerns raised about commercial profiting and/or other unexplained motivations there means that the link needs to be gone from my post.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: TwoDDs on March 15, 2016, 12:34:57 PM
This discussion was very helpful to me.  Thanks.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: TwoDDs on March 29, 2016, 08:32:01 AM
A warning.  The facebook group kicked me out (without so much as a how do you do) for pooh-poohing the idea that this 2014 article discussing the apparent the relationship between OIT and EOE was a scare tactic posted by big pharma to keep us all in line.  (My comment, something along the lines of - The article is not terribly scary and if that was their intent, big pharma needs better editors - was perhaps a bit condescending).   The leaders seem a little fringe - but most of the folks on there seemed like they were just trying to do their best and the group has a good list of doctors doing OIT.

http://allergicliving.com/2014/03/18/those-who-outgrow-food-allergy-can-risk-eoe/
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on March 29, 2016, 06:37:29 PM
So there is a doc here who is doing it. And he is covered by our insurance, whereas where we've been going for SLIT for four years is not anymore.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Macabre on March 30, 2016, 06:02:39 AM
Yeah, TwoDDs--it seems to be a group that only posts good news and celebrates the founder of the group. asking critical questions should be welcomed, but so far, I'm not seeing that. Still, for finding out info about OIT, more helpful than our thread. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: TwoDDs on March 30, 2016, 08:34:34 AM
Yes, prior to being kicked out, I found two doctors/groups within 4 to 5 hour commutes (we live on top of Dr. Wood and I tend to agree that his influence is keeping local practitioners/groups from offering OIT) and have submitted some initial labs to one of them.  He was kind enough to call me back to discuss whether my daughter would be excluded from consideration (no) and whether or not he would be willing to consider treating more than peanut allergy (yes, but only on a case by case basis and only one at a time after additional testing).  So, I think I got what I needed before I mouthed off and lost my access.

DD isn't terribly interested - but, I think that will change as she spends more time with friends as opposed to family who generally discount going anywhere that isn't more safe.  We'll see.  I'd like her to start this summer - since it will require missing a couple of school days a month and next year is 7th grade, really has got to be the last grade that schedule will be easily manageable - not that one couldn't do it in later years, just that I feel this will be the last grade where it could be easy.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on March 31, 2016, 08:08:51 AM
Sorry you were banned and lost the useful things there . . .

Gee, reminds me of banning way back when!  (8 1/2 years now!!)

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 01, 2016, 03:46:21 PM
Frustrated. 

Just the facts, ma'am.  That's all I want.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 02, 2016, 07:50:10 AM
PUtting Ehrlich's statement from March 2015 here.  Thought we already had link in this thread, but I quickly rechecked and did not see it.

http://asthmaallergieschildren.com/2015/03/11/old-allergists-and-new-treatments/

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 02, 2016, 09:09:53 AM
Related to the OIT 101 Facebook link and group:

There seem to be many recent instances where some pro-OIT group members and/or leaders have created "Look alike" food allergy groups at Facebook (to look like the frontpage of some of the bigger FB food allergy groups) . . . with the express purpose of a push to private practice OIT and perhaps discouraging balanced discussion and/or other treatments.

I find this just as concerning, if not more so, than FARE's link to Aimmune.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 02, 2016, 09:14:58 AM
Linking again to another related thread here:

Aimmune, AR101 and CODIT: FARE
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 02, 2016, 04:17:39 PM
http://snacksafely.com/2015/10/breakthrough-food-allergy-therapies-and-the-big-business-behind-them/

I would assume a linkage between the lone commentor at bottom of this blog post and . . . well, I'll let readers here make that connection.

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 02, 2016, 05:48:15 PM
PUtting Ehrlich's statement from March 2015 here.  Thought we already had link in this thread, but I quickly rechecked and did not see it.

[url]http://asthmaallergieschildren.com/2015/03/11/old-allergists-and-new-treatments/[/url]


I think this is reasonable and I'm not a doctor or a research scientist so I can't comment on all aspects of all things regarding OIT.  I think that saying OIT 'isn't approved' and talking about the FDA is a bit misleading because I believe the FDA has said it won't ever approve OIT as it is done other than via a method like Aim mune because it is food, not medication so can't be approved via the FDA.  There is what seems to be substantial research by Dr. Nadeua for the past decade and she has done it in what seems to me to be the method that drugs are studied, stage one, stage two, etc. 

I agree with the recommendation that I'd only feel comfortable with OIT at a place like where we had it or Dr. Nadeau or other affiliated place. 

I think reasonable, respected allergists can have opposing and valid opinions on this topic. 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 02, 2016, 05:51:57 PM
Related to the OIT 101 Facebook link and group:

There seem to be many recent instances where some pro-OIT group members and/or leaders have created "Look alike" food allergy groups at Facebook (to look like the frontpage of some of the bigger FB food allergy groups) . . . with the express purpose of a push to private practice OIT and perhaps discouraging balanced discussion and/orother treatments.

I find this just as concerning, if not more so, than FARE's link to Aimmune.

If that is their leaders, that's really poor form.  I heard talk of it happening once to one group.  Has it happened many times?  Wow!  That does't seem legal. 

They do go to other places and try to educate everyone.  I think they believe info about OIT is being suppressed and they are helping educate the average FA person about the truth.  The assumption that this is built upon is that the rest of the FA community doesn't know what they know.   
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 02, 2016, 06:02:49 PM
Did you see the recent issue of Allergic Living?  It was like half the magazine was an advertisement for Aim mune.  There was the opening by the editor praising it, the article on Aim mune itself that, and then an article from FARE pushing for it.  I didn't see a mention of the link between FARE an Aim mune.  I'm not actually down on Aim mune but something about all that didn't feel quite right to me.

I think Aim mune could help more people get OIT and I think that done properly, OIT will work on most, but not all, people with FAs.  I think it will make more doctors feel comfortable doing it.  Not all will want to do it or be ready for all that it involves, even if they use a pre-packaged pill.  I do not think using this pill is better than the way it is currently done in OIT clinics, though. 

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 03, 2016, 10:40:42 AM
Have not read recent issue of Allergic Living . . . on my desk.  Will put it in the car backpack so that I can read this coming week while waiting for kids at activities and being the driving-parent!

Thanks for that heads up!

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on April 03, 2016, 11:31:58 AM
Quote
I think reasonable, respected allergists can have opposing and valid opinions on this topic. 

Or even for different patients within their individual practices, maybe different opinions on OIT.  :yes:

I've been quite concerned by the notion (increasingly promoted) that OIT really can be "for everyone-- if they were, you know.. motivated enough to pursue desensitization..."

 :-/ :-[  Seems pretty clear from most of the researchers in this niche that this is not true-- and may never be true, either.  There are people for whom desensitization is not a good bet.  It's a lot nicer to pretend that isn't true-- but not "everyone" can be desensitized to environmental allergens, either.   Makes complete sense to me that some people have an immune system that wouldn't respond as expected to food allergen desensitization, either.

Kind of wish that there were a larger push to understand what the indicators/markers are for who those people are-- because while the notion that the status quo is "the worst that could happen" might be tempting-- I don't know that it's true, either.  There are people who have tried SCIT for aeroallergens with the best of intentions, and wound up really screwing up their immune systems as a result...  apparently permanently.

 

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 03, 2016, 07:47:41 PM
I don't think any doctors are claiming OIT is for everyone.  NEFATC screens people and after screening they have over a 90% success rate with the remaining people.  That means their success rate would be lower, maybe 80 or 85% if they admitted everyone, I would guess.  Who knows.  Aimmune claims 80%, I believe.  4 of 5. 

It isn't about being dedicated or not.  It is a significant commitment that wouldn't work for everyone.  It might not be worth it for some and some won't even be accepted to programs depending on their reaction history.  It was hard for us and was a much bigger commitment than I anticipate before we started doing it.  It might not sound like it was but it really, really was.  We were very lucky.  Crossed off two allergens from our list.  Makes life much easier for us. 

Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 05, 2016, 11:56:18 AM
Thought this might be appropriate in this thread as well as other places on boards.

When it comes to considering any "treament" or "therapy" or "cure,"  a person would be wise to step back and assess, especially with regard to the medical or care provider AND/OR the person(s) pushing for that course of treatment or action . . . perhaps beginning with a tool such as this easily understood assessment as to motivation / manipulation:

http://expandedconsciousness.com/2016/03/29/5-ways-to-tell-that-someone-is-trying-to-manipulate-you/
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 05, 2016, 12:02:13 PM

I think reasonable, respected allergists can have opposing and valid opinions on this topic.



Amen, sista.

 :yes:
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: CMdeux on April 05, 2016, 12:29:39 PM
I am so appreciative of the unfiltered and open dialogue that we've managed to have about emerging OIT (and related issues) here over the course of many years.


Just needed to say that.   :heart:
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 05, 2016, 06:00:11 PM
Yes, I don't feel that long time members have tried to make me believe one way or the other about this topic.  I do feel people shared their opinions over time openly and honestly.  I like that our discussions have the question, 'what do we *really* know?' in them.  :)
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on April 11, 2016, 10:07:08 AM
(Pretty sure the link to this entire thread below is already in this thread somewhere . . . )

But wanted to re-share the link at a recent point . . . so folks might read from there forward as it relates to the issues of allergists and/or Desensitizaton Prog's, etc:

Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on April 11, 2016, 04:39:09 PM
My son passed a food challenge years ago and was eating the food at home fine and then ate a much bigger dose of the same food and had ana.  Then he seemed hyper reactive to the food.  Fast forward some years, we managed to keep the tiniest amount of the food in his diet--miniscule.  We did desensitization formally to the food and he is now eating it in greater amounts and more potent forms than he could back then when he first passed the challenge. His allergist said some people find that they have to back their dose way down for a while and then slowly increase.  He was not our allergist when DS passed the food and failed at home soon after and that allergist we had then refused to believe DS had reacted.  The new allergist said he would not have recommended we stop the food altogether.  We might have had to stop for some time but once his system calmed down, he would have had us try again with smaller amounts. 

I think that having outgrowing a food allergy stick is tied to ingesting the former allergen regularly.  Having OIT stick is also tied to this as well as to that one study that found taking lactobacilicus gg in a certain dose with one's dose of allergen during OIT made OIT results more successful. 

I think that most people who outgrow stay with the allergy outgrown.  I have not read of a high relapse rate in OIT if people are continuing to follow up by eating the food regularly and on an ongoing basis.  I'm sure it can happen but I go by odds and I don't think the odds of that are very high.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: LinksEtc on April 22, 2016, 09:42:21 AM
I also don't like that a food protein is being moved into monetizing position here with a PATENT-- no, no, no.

One reason why SCIT has been relatively affordable and available to hundreds of thousands of patients over the past six decades is that the extracts are NOT "patent" materials.

 :disappointed:

This is like patenting BRC genes-- I don't like that either-- because when you start making naturally-occurring nucleic acids, proteins, and the like someone's intellectual property, you are CONTROLLING HOW THEY CAN BE USED.  Even for research purposes.

My gosh I don't think that is a good thing here.  NO way.





Tania Simoncelli:
Should you be able to patent a human gene?
http://www.ted.com/talks/tania_simoncelli_should_you_be_able_to_patent_a_human_gene

Quote
A decade ago, US law said human genes were patentable — which meant patent holders had the right to stop anyone from sequencing, testing or even looking at a patented gene. Troubled by the way this law both harmed patients and created a barrier to biomedical innovation, Tania Simoncelli and her colleagues at the ACLU challenged it. In this riveting talk, hear the story of how they took a case everybody told them they would lose all the way to the Supreme Court.






Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: AdrianaPA on May 25, 2016, 09:29:54 PM
I'm very new here so I'll just add to this that I have been experimenting (since September) by putting my PA DD on a daily dose of Lactobaccilus rhamnosus gg to see if we could affect her peanut IgE.  After 6 months we've tested and it has come down 20%.  Her numbers had been pretty steady prior so I see some benefit besides the fact that I didn't see any harm in trying. We also had the healthiest winter ever so there's that!  Take it for what it's worth.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: AdrianaPA on July 04, 2016, 01:43:51 PM
Did you see the recent issue of Allergic Living?  It was like half the magazine was an advertisement for Aim mune.  There was the opening by the editor praising it, the article on Aim mune itself that, and then an article from FARE pushing for it.  I didn't see a mention of the link between FARE an Aim mune.  I'm not actually down on Aim mune but something about all that didn't feel quite right to me.

I think Aim mune could help more people get OIT and I think that done properly, OIT will work on most, but not all, people with FAs.  I think it will make more doctors feel comfortable doing it.  Not all will want to do it or be ready for all that it involves, even if they use a pre-packaged pill.  I do not think using this pill is better than the way it is currently done in OIT clinics, though.
This is key, I think, when considering the place Aimmune seems to occupy in moving this type treatment forward. I'd been considering OIT for a few years but without any allergists in my state/city offering the treatment I hesitated. I kept picturing myself on the highway in the middle of nowhere with my daughter reacting and I'd shelve the idea for another month or so.

Which is exactly WHY I jumped at the chance to have my daughter enroll in the Aimmune AR101 phase 3 trial. It is our allergist who is participating and it is being conducted in clinic at our Children's hospital = No highway, no mommy nightmares, but I still have nagging concerns. Will she be truly desensitized?  Is she in the computer assigned placebo group?  What of the proteins that have been removed and are not in this food/drug?  After all this I want her to be at 3 peanuts or more. Preferably 10. I really like the sounds of the New England center & the Stanford model but that involves travel and we are back to my mommy nightmare.

I'm rooting for Aimmune both personally and for the food allergic community. Treatment MUST move forward and become more widely available. Strict avoidance/abstinence isn't a life plan in my opinion. We are super careful and even we've screwed up and landed in the ER and we are thankfully all alive to tell the tale.

I want a different life for my daughter and I am slowly but surely moving towards it with her. If this doesn't work I'll confront my fears and we'll try an out of state OIT center. For now - fingers are firmly crossed for AR101 & that Aimmune helps to normalize a method of treatment for all allergies.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on July 04, 2016, 02:16:14 PM

Good luck!  I think that the top dose ofAimmune is very low so you might want to explore ways to continue OIT once you reach that top dose (assuming your child isn't getting placebo).  Best wishes!
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: name on September 28, 2016, 11:02:00 PM
So, for the folks who have been doing OIT w/o FDA approval, enlighten me on how it works with the insurance plans.  I ain't judging you on the choice to pursue OIT, I just wanna know if insurance is covering it.  Something I heard a while ago is coming back to me now about FARE trying to establish a clinical network.  If you've been doing OIT for a while do you know if your office is part of the FARE clinical network or do they essentially don't care a fig about FARE's clinical club?
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: lakeswimr on September 29, 2016, 06:11:07 AM
it was covered.  dnnt know about part 2 question but i would assume so.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: hedgehog on September 29, 2016, 06:31:50 AM
Was not covered when we did it, but DH made sure it was covered on his company's insurance after that (his coworker's kid went to the same office after DS was done). And at a follow up visit, we learned that most of their patients are covered on insurance now.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on September 29, 2016, 07:57:49 AM
Cross-posting this related info into this thread.

AYFKM.  Not enough of a lesson learned with Mylan?  Icarus much?  I'm so incredibly glad there's NO RELATIONSHIP between the advisory board and Aimmune.  I'm sure 'Dan' rode the Tardis in from another dimension with no Aimmune overlap whatsoever.  For the record, I have zippo to do with that wack OIT101 group riding my posts.   

Good to know you're pleased, James. 

Quote
Until resigning to become Chief Medical Officer of Aimmune, Dr. Adelman was a member of the prestigious Research Advisory Board of Food Allergy Research & Education (FARE), the world’s largest private funder of food allergy research. For several years, he was actively involved in reviewing FARE’s research funding and helped to shape the organization’s overall research strategy.

“We’re deeply grateful for the contributions Dan has made as a member of our Research Advisory Board, and we’re pleased to see him join Aimmune,” said James R. Baker, Jr., M.D., FARE CEO and Chief Medical Officer. “Dan’s leadership and clinical expertise will be great assets as Aimmune continues to progress toward what would be the first FDA-approved oral immunotherapy for food allergies. This treatment could make a great impact on the lives of millions of people at risk from peanut allergy.”

For timeline purposes this was released right before Epigate really blew up.  Dated Jun 21, 2016.

businesswire.com/news/home/20160621005527/en/Aimmune-Therapeutics-Appoints-Daniel-Adelman-M.D.-Chief
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: name on September 29, 2016, 09:00:42 AM
You know that's going to feed the trolls elsewhere, right?
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: Suzie Fromer on December 12, 2016, 12:42:40 PM
So, for the folks who have been doing OIT w/o FDA approval, enlighten me on how it works with the insurance plans.  I ain't judging you on the choice to pursue OIT, I just wanna know if insurance is covering it.  Something I heard a while ago is coming back to me now about FARE trying to establish a clinical network.  If you've been doing OIT for a while do you know if your office is part of the FARE clinical network or do they essentially don't care a fig about FARE's clinical club?

FARE's clinical club is only for clinical trials; most (but not all) of the private practice OIT allergists are not also doing trials, though some do.  We couldn't get into a clinical trial, waited for years/were patients for 10 1/2 years at a 'clinical club,', and are so happy to finally be doing OIT with a private practice OIT allergist a 1/2 from my house for peanut/egg (2 different kids).  Covered by insurance, fyi.  I waited for an allergist close (my goal was one hour's drive) b/c we're going to next work through my older son's many allergies and it will probably take a few years.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: name on December 23, 2016, 12:35:12 PM
Allergy Bro needs his firm NO to be respected.  No does not mean maybe.  Unconcerned with intense internet feels, more to firmly discourage multiplying his clear lack of consent and really disrespect to the liability med professionals face.  Whatever drama happens elsewhere should not be replicated here.

Quote
Dr. Dave Stukus ‏@AllergyKidsDoc
.@suziefro please do me a favor - take my name off your site. You know you stole this quote & are misrepresenting me. pic.twitter.com/Z1x09925Bw[\quote]


twitter.com/AllergyKidsDoc/status/806347634562793472/photo/1

This post does not constitute an endorsement of Allergy Bro.  On this single issue I will not let any of my activity be complicit in any intended or unintended attempt to co-opt his.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on February 08, 2017, 07:46:32 AM
Putting this here -- need to research -- feel free to comment

Allergic Tension Fatigue Syndrome

and depression as poss side effect of some food allergy treatments (OIT esp??) . . . .



Not necessarily about anxiety or depression due to fear of ingesting allergen(s), but instead an actual physical or chemical reaction that is the body's response to the allergen?  Does that makes sense?

 
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: ajasfolks2 on February 08, 2017, 07:53:42 AM

  Covered by insurance, fyi.


Yeah, well, just FYI.  The "how" this is being covered by insurance (as to HOW it is billed by medical care provider) is potentially a huge problem.

Filing every OIT visit as a "food challenge" is NOT what was intended for that CPT code and coverage thank you very much.
Title: Re: Desensitization Programs in the US -- OIT SLIT SCIT
Post by: hk on April 03, 2017, 03:00:20 PM
Putting this here -- need to research -- feel free to comment

Allergic Tension Fatigue Syndrome

and depression as poss side effect of some food allergy treatments (OIT esp??) . . . .



Not necessarily about anxiety or depression due to fear of ingesting allergen(s), but instead an actual physical or chemical reaction that is the body's response to the allergen?  Does that makes sense?


I need to look into this.  DD is starting OIT this week and already has a history of anxiety.