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Topic Summary

Posted by: PurpleCat
« on: September 27, 2020, 10:00:27 AM »

My DD was not an "acceptable" patient.  They knew it would not work for her based on her reactions and her sensitivity.
Posted by: aggiedog
« on: September 26, 2020, 09:10:32 PM »

My daughter did it almost 10 years ago now.  It was very successful with minimal issues.  Sorry, I rarely come to the main board here any more since overall her allergies are so much easier to live with these days. She has developed nut allergies over the years, though, which I why I came over to post.  I'd be happy to answer any questions you had.
Posted by: spacecanada
« on: September 09, 2020, 10:34:19 PM »

OIT would delay any challenges, for sure, since they cannot be done whilst undergoing OIT (at least not with any allergists here.)
Posted by: joshsmom
« on: September 09, 2020, 09:07:11 PM »

We have decided to move delay OIT for the time being. It is not the FDA approved peanut product. He has 3 nut challenges soon so I want to get through those.
Posted by: hedgehog
« on: September 09, 2020, 06:53:31 AM »

The two reasons I stay here are that I love the community, and that I occasionally can share DS's experience with OIT for peanut.  The link is the center he went to.  I have not read it over recently, the website is very different from in his day, as it has greatly expanded.  He was patient #104.  When he started, we were told that none of the previous 103 had had a serious reaction, but most had had some minor reactions, most often nausea and/or vomiting at some point after increasing the dose.  AFAIK, there were no serious reactions while he was going through treatment. 

His experience was smooth sailing. He never experienced even a minor reaction and was lucky enough to remain healthy in all other ways during that time.  I am very happy we did it.  It makes a world of difference.

That said, my nephew's wife tried it as well.  Different study, one meant for adults.  She had three anaphylactic reactions (all of them in the office I believe, so as bad as it was, it was better than at home), and had to drop out of the study. 

https://nefoodallergy.org/
Posted by: spacecanada
« on: September 08, 2020, 08:24:28 PM »

I know someone whose daughter graduated peanut OIT last year. The risks are very individual and somewhat relative to the protocol the allergist uses and the individual’s tolerance. The risk of anaphylaxis is there, and does happen for many people. Most people are able to adjust and move beyond any reactions, though.  But, from the people in my local allergy group, my friend, and her daughter, they felt the risks were worth it.

You will have to ask a lot of questions, and ensure the allergist answers them to your satisfaction. When to skip doses (sickness, typically), how to minimize reactions, how to contact the allergist with questions or urgently if there are any reaction symptoms, what happens if there is a reaction (lower dose, stop, etc.), timing of dosing (and why that time of day!), restrictions you activity or diet during OIT... so many questions.

And the big one: are they using the latest approved OIT ‘drug’ or actual peanut byproducts and peanuts eventually.

I have failed three various attempts at immunotherapy for various allergens. I have had some success with baked/processed milk, but that could be an intolerance and not an allergy (long story). For me, immunotherapy was a really awful journey full of frequent anaphylactic reactions, even on slower lower dosing schedules. So it isn’t for everyone. But for the people who tolerate it, and have kept up with the maintenance, it has been life-changing.

It is a very personal decision. Good luck.
Posted by: joshsmom
« on: September 08, 2020, 04:24:24 PM »

Has anyone tried OIT for peanut?  We go to talk to the allergist about it tomorrow. My DS is 16 now. I am really stressing out about this! Is it worth the risk?