login
Food Allergy Support is now on Twitter. Follow us @FASupport. You may also follow our Tweets in our new global footer at the bottom of the page here at FAS!

Author Topic: Desensitization Programs in the US -- OIT SLIT SCIT  (Read 34902 times)

Description:

Offline lakeswimr

  • Member
  • ***
  • Posts: 2,713
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #195 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.

Offline LinksEtc

  • Member
  • ***
  • Posts: 2,701
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #196 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.






FARE's Food Allergy & Anaphylaxis Emergency Care Plan
http://www.foodallergy.org/document.doc?id=234

Confusion between anaphylaxis and asthma:
Standard Protocol for "Asthma Action Plans"

Offline AdrianaPA

  • Newbie
  • *
  • Posts: 6
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #197 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.

Offline AdrianaPA

  • Newbie
  • *
  • Posts: 6
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #198 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.

Offline lakeswimr

  • Member
  • ***
  • Posts: 2,713
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #199 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!

name

  • Guest
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #200 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?

Offline lakeswimr

  • Member
  • ***
  • Posts: 2,713
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #201 on: September 29, 2016, 06:11:07 AM »
it was covered.  dnnt know about part 2 question but i would assume so.

Offline hedgehog

  • Member
  • ***
  • Posts: 6,540
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #202 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.
USA

Offline ajasfolks2

  • Global Moderator
  • Member
  • ****
  • Posts: 11,889
  • Committee Member Firebird
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #203 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
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

name

  • Guest
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #204 on: September 29, 2016, 09:00:42 AM »
You know that's going to feed the trolls elsewhere, right?

Offline Suzie Fromer

  • Newbie
  • *
  • Posts: 1
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #205 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.

name

  • Guest
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #206 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.

Offline ajasfolks2

  • Global Moderator
  • Member
  • ****
  • Posts: 11,889
  • Committee Member Firebird
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #207 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?

 
« Last Edit: February 08, 2017, 07:50:31 AM by ajasfolks2 »
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

Offline ajasfolks2

  • Global Moderator
  • Member
  • ****
  • Posts: 11,889
  • Committee Member Firebird
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #208 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.
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

Offline hk

  • Member
  • ***
  • Posts: 1,923
Re: Desensitization Programs in the US -- OIT SLIT SCIT
« Reply #209 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. 
DD (13 yo) - peanut, tree nut, egg, sesame, avocado, cherries, mango and possibly fish?
Me - EoE