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Author Topic: Desensitization Programs in the US -- OIT SLIT SCIT  (Read 37338 times)

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Offline CMdeux

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Re: Desensitization Programs in the US
« Reply #30 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. 
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #31 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.
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Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #32 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.

« Last Edit: November 21, 2011, 07:23:01 AM by Arkadia »
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Online rebekahc

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Re: Desensitization Programs in the US
« Reply #33 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.     
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #34 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.
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Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #35 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>. 
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Offline CMdeux

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Re: Desensitization Programs in the US
« Reply #36 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.
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #37 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?
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Online rebekahc

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Re: Desensitization Programs in the US
« Reply #38 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.
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

twinturbo

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Re: Desensitization Programs in the US
« Reply #39 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.

Offline aggiedog

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Re: Desensitization Programs in the US
« Reply #40 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. 

Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #41 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.
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Online momma2boys

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Re: Desensitization Programs in the US
« Reply #42 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.  :'(
peanut, treenut, sesame
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Online rebekahc

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Re: Desensitization Programs in the US
« Reply #43 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.
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline Arkadia

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Re: Desensitization Programs in the US
« Reply #44 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?


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