Peanut avoidance vs. OIT
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Anonymous
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Anyone here have a kid who has a peanut (or other food allergy) and chose to go with avoidance rather than OIT?
I am on the fence about it. It's discouraging that it is such a long process that does not end up working for everyone, with certain risks, and the ultimate result is not a cure where you are freely eating peanuts anyways. At the end of the day, seems like you are still technically "allergic", you can just tolerate a certain dose. vs. continuing what we have always been doing, which is avoiding peanuts, which has worked out so far and we have not had any bad reactions. This seems like a much easier path. I know plenty of people are doing OIT and I'm totally in support of that. I'm wondering if there is anyone who has chosen avoidance and could shed some light on their thought process. |
Anonymous
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I did OIT, which did work. However, my child flatly refused to continue the maintenance dose. It turned into an epic battle of the wills and we tried every vehicle a peanut could be eaten in and we just could not do it nightly. She was in 4th grade at the time. Now she is a teen and we do avoidance.
My thinking at the time is if something happened and she had a bad allergic reaction and I had not pursued the OIT, how would I feel? I felt like I would have a lot of regret. I do have sort of a clean conscience knowing that I did everything medically available to me to try to prevent a serious outcome for her. I do think OIT is a very imperfect treatment option and it's a big burden for not that great of an outcome. So I see why you are struggling with the decision. |
Anonymous
| OP how old is your child? |
Anonymous
He’s 7 |
Anonymous
Yes this is how I feel. I want the clean conscience but also feel that it’s a lot to take on for an uncertain outcome. |
Anonymous
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There's no one right answer. The likelihood of true outgrowth at 7 is poor, so you're looking at increased protection. Which, not insignificant. Worth it for the burdens of OIT + increased risk of anaphylaxis from the OIT itself? Tough call.
Now add the option of Xolair. Either alone (for increased protection) or with OIT (may get close to free eating but no guarantees once off Xolair). Some families may like this fit. But it's ongoing shots. Fourth option, SLIT. Benefit of increased protection without activity restrictions/increased risks of OIT. Hard to find offices that offer it. Look for an allergist that can walk you through the pros/cons/risks with each of these therapies and find the best fit for your family. OIT is not the only option, and personally I find the burdens and risks are downplayed, but you're the best judge of what's realistic for your family. |
Anonymous
We are dealing with this now OP. Our daughter is 14 months so while I dont have years of experience with it I am in the trenches where every outing and family event and Halloween trick or treat feels like Russian roulette. The problem IMO with your premise is that with OIT you are still likely having to do avoidance for lots of those that "fail". Maybe I am mistaken but the goal isn't absolute free feeding with OIT, although that is the "best" outcome, the goal is to increase the threshold for ingestion so that ANY exposure wont trigger anaphylaxis. That's the way I am choosing to look at it because even if we only get to 1/2 tsp or 1 tsp tolerance that's still better than 0 tolerance for exposure or ingestion. Peanut avoidance is tough. We also have egg to navigate but peanut is sticky vs egg proteins aerosol, etc. Nothing, unfortunately, is cut and dry in the allergy world. You could wait for some of the other advancements that are hopefully coming out in the next 5-10 years but not every therapeutic works on every kid. The age of your child matters to because my understanding is the ES-HS have the highest rates of accidental because of being ashamed of their allergy/not wanting to feel different, trusting peer sources, less adult involvement and oversight, etc. Issues with romantic involvement and accidental exposure there... I mean the list goes on. |
Anonymous
| My 19 year old son is severely allergic to peanuts and hazelnuts. He has practiced complete avoidance for 17 years (he was diagnosed at age 2). By complete avoidance, I mean nothing from a facility that produced other products with peanuts/hazelnuts, no bakeries, no ice cream parlors, limited restaurants, I.e. He has not had a second reaction. He is in his second year of college in another state. He has managed very well for 17 years. That being said, this past summer he started the TIP program with the Food Allergy Institute in SoCal. I discovered it online, spoke with friends who have a neighbor who successfully completed the program, and then sat down to discuss it with my son. He read up on it, we did a zoom consultation with the FAI, and he decided that he was all in and wanted to give the program a go. He has almost completed his first dosing cycle, it is a lot, but he is managing it like a pro and committed to the process. We are hoping for food freedom, but would still be happy if his program ended with an incidence of accidental exposure not resulting in anaphylaxis. I do think that my son, being an older “child” with food allergies, makes the program easier to manage. He is completely invested and understands the importance of following a daily schedule of maintenance food and rising food. At 19, he doesn’t fight eating his daily amounts, as he really understands the big picture. I am not sure how old your child is, but you could always continue to think about it and revisit the idea of OIT later. I wish you the best of luck! |
Anonymous
OP here - I haven't actually found it hard to avoid peanuts, but my kid is probably also not super allergic because we don't avoid food that's been processed on shared equipment and eat out at a lot of restaurants. I think he's only had one accidental exposure in 7 years where he got a rash around his mouth. I think I would be more inclined to do OIT if he was very allergic. For us it has not really affected our lives. We just don't eat foods that actually contain peanuts. |
Anonymous
| If you want an extra intervention, I would try SLIT alone or Xolair with OIT. I personally would not do OIT alone because of the burdens (increased risk of ANA + activity restrictions). Great that TIPS worked for other pp's child, but no need to go out to CA these days, especially not if peanut is the only allergen. My two cents. |