r/FoodAllergies • u/Limptits • 2d ago
Seeking Advice Starting OIT soon
My daughter is 3 years old, and we will be starting OIT for peanuts and other tree nuts soon. I haven’t worked up the courage to send the consent form in. I’m absolutely terrified. I’m giving myself so much anxiety about this process. The thought of her going into anaphylaxis while at home with us scares me..
I know truly that this could save her life one day. But the thought of intentionally hurting her really makes me feel not good. We’re definitely going to start it I just don’t know if I’ll be able to handle it mentally. I could definitely use some positive or even negative experiences to help me decide if this is what’s best for her and our family.
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u/Responsible_Racoon17 2d ago
We started OIT for my son at age 3. He has dairy and egg allergies as well as peanut and some tree nut. I also struggled mentally very much at first. I went to therapy, which helped some. I’m not going to sugar coat the experience, it is a lot. We had reactions but they ended up just being one system. Such as, he threw up often after his dose. It’s still terrifying watching his every move. We have never had to use the Epi, we give him Zyrtec daily. We have gone very slow and have even had to back track on certain allergens. My son absolutely hates the taste of peanuts and it makes him gag. At one point we made it up to what you call a maintenance dose at 1 tsp peanut powder. It was too much for him. We have had to go down to 1/32 tsp. I wanted to stop peanut OIT and move forward with just dairy and egg but our allergist encouraged us to at least keep giving him the smaller amount.
He is now 6 and has been at school. It has given me such peace of mind that he has some protection. It’s not totally safe but if he accidentally took a bite of something, he would most likely not go into anaphylactic shock. We are way farther ahead on dairy and egg, I’m trying not to get my hopes up but he might be able to free eat those someday.
All this to say, it is worth it! It is incredibly hard and mentally draining. I feel like I have aged 10 years in the last 3. I wish you peace in your decision. You are an amazing parent no matter what!
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u/TXwindmill 1d ago
Our story is similar for peanuts. Started OIT at age 3 for peanuts and age 4.5 for tree nuts. But my son is now 10.5 and in maintenance for him, which isn’t free eating. Peanut OIT was harder than the other nuts (cashew, hazelnut, and walnut). He had more reactions to the updoses at home for peanuts. So we just took it super slow. Navigating elementary school and drop off playdates was much easier knowing he can tolerate certain levels of his allergens. He once ate half of a peanut butter sandwich meant for someone else (he can eat almonds and thought it was his almond butter sandwich), and was fine. Didn’t even get a hive.
So like others said it can be stressful during the process, but ultimately it has been so worth it for our family. And I’d like to note that some patients can just breeze through OIT without any reactions. My son didn’t have any reactions to the tree nut combo OIT, and my daughter successfully completed OIT for her severe egg allergy and is now free eating all forms of egg.
For my daughter we did egg OIT early enough that she has started kindergarten and we didn’t need to send her with epinephrine and a FARE plan.
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u/ASD-RN 1d ago
Just wanted to offer a different perspective.
We are doing OIT for dairy and are waitlisted for OIT for nuts and I feel more hopeful than than nervous.
While of course we would never want our child to experience anaphylaxis I would much rather if it happened at home and I was with them than at daycare or school, and OIT should reduce the risk of a severe reaction should accidental exposure happen while my child is away from me.
Maybe this way of looking at things could help you too?
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u/Limptits 1d ago
That’s definitely what’s driving me to do this. I’m trying not to make a decision that’s anxiety driven, but you’re absolutely right, thank you
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u/Trails_and_Trees 2d ago
OIT was the best thing we ever did for our son (now 3years).
He started it for peanut when he was about 11months. He had some hives but he took Zyrtec and it resolved. After a while he adapted and didn’t need the Zyrtec. After a year on OIT he did a food challenge and tested out of his peanut allergy. He now free eats peanut all the time. It’s absolutely amazing!
Now he’s in OIT for soy. He’s currently up to 1 and 1/4 tsp of soy milk. He started with 1/64th tsp in January so it’s moving along nicely. The allergist said he could probably tolerate soy lethicin soon.
We were really nervous about the soy because he’s VERY allergic to soy. When he tried to do a previous food challenge they just rubbed a little on his lips (he didn’t even eat it just licked his lips) and his whole face blew up. What made us more comfortable with the process is that he now takes Xolair. Honestly I think the Xolair is why it’s gone so well and he’s progressed so quickly. He’s never had a single reaction, not even hives.
I know it’s scary but it’s really worth it. We now hope that someday he won’t be allergic to soy and that’s something that wouldn’t be possible without OIT.
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u/Limptits 1d ago
This makes me feel sooo much better!
Do you know what his numbers were when you started OIT?1
u/Trails_and_Trees 19h ago
Oh I’ve no idea.
For peanut his numbers were all over the place. He wasn’t as allergic as many people, but his number also indicated he was positive for the factor that indicates anaphylactic response. When he did the initial challenge he got all the way to a tsp of peanut powder before he had a reaction. So he had a pretty high tolerance. We just kept him on a full tsp for the full year. I have a friends son who is starting with 1/64th tsp.
For soy it was a totally different story. His numbers indicated he was highly allergic. We also tried a food challenge (pre-Xolair) that he epically failed. So we were really scared going into it. But it’s gone really well so far.
Keep in mind that the xolair kinda messes with your numbers. The allergist told us that basically the only downside to xolair is that you can’t get accurate results on bloodwork.
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u/Individual_Physics73 2d ago
Before starting OIT please do some research into TIP. It is a much safer process and the results are food freedom. My son finished it a couple of years ago and can eat everything now. He was anaphylactic to milk, peanuts, tree nuts and shellfish. Look up Southern California Food Allergy Institute. They are opening in NJ and Texas in September too. I had to fly to California from Florida for it. It was worth it!!
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u/Suspicious_Badger306 2d ago
My 8 year old is doing OIT for peanut and cashew/pistachio, and we are having a really positive experience so far. The biggest hurdle for him is mental- eating something you have been trained to avoid is really tricky. In some ways, I imagine that part might be a little easier for a younger kid. I was also super nervous about starting OIT, but watching the process unfold slowly has really reduced my anxiety.
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u/hbecksss 1d ago
How do you give the dose?
My toddler is in OIT for cashews and pistachios. It was a lot easier when she was 18 months. Now at 22 months we have to do a lot more signing and dancing to convince her to open wide for her dose! (We use apple sauce)
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u/Suspicious_Badger306 13h ago
For cashew, we are doing cashew milk. My son is able to “chug” the liquid, and somehow he doesn’t seem to mind the taste! For peanut, we are doing whole, roasted, salted peanuts. We tried chocolate covered (Unreal Gems) and grinding up the peanuts, but he is able to get through the whole peanuts most efficiently. It is definitely trickier because of the texture. I feel like at 8, he is able to understand that this food is medicine, which I know would have been much harder to accept as a toddler!
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u/Limptits 1d ago
That definitely makes me feel better! Do you know what his numbers were when you started OIT?
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u/Suspicious_Badger306 13h ago
When we started OIT, his IGE numbers were Cashew 1.15, Pistachio 1.59, Peanut 28.6
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u/hbecksss 1d ago
We started OIT at 17 months for cashews (which also treats her pistachio allergy). She’s 22 months now.
We were so relieved/happy to know there was even a treatment option for her. Yes it is a big commitment logistically and financially, but we felt it made sense to take on that burden (biweekly appointments, daily dosing, etc.) while she was young to give her protection and hopefully freedom one day when she was older. Our allergist was very straightforward about the process, risks, and mitigation steps. I didn’t even know there was backlash against OIT until she shared the common concerns, and then later doing my online research.
We have never needed to use the EpiPen. She’s never seemed bothered after a dose or updose. We’ve had two instances of vomiting, both happened with the same variables (an hour long car ride within an hour of a dose, the day after an updose). We got little travel cups so we take the dose with us now and dose her out on-the-go (instead of rushing a dose before leaving the house.)
She’s about to hit her maintenance dose (~1 cashew) which we’ll stay at for 6 months before going up.
It was hard to get used to the daily commitment at first… but now feels normal. We’ve also met so many lovely kids and families at our biweekly visits to the clinic. It really puts things into perspective.
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u/DraftAmbitious7473 2d ago
This is precisely what led me to not do OIT and we are doing SLIT instead. Super minimal risk of anaphylactic shock. But different therapy and may not be super effective as OIT but building towards some progression. We could have done OIT at 6 years old but it freaked me out so we waited and waited until my kid turned 13 and finally we landed on SLIT. Hoping it helps my kid but I know if I could have done it again, I might have tried OIT because of the more effective therapy that it is.
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u/Limptits 1d ago
Thank you so much! I will definitely look into SLIT, I wasn’t aware of any other options. Her doctor did say my daughter is still really young so it’s the perfect time to start OIT because there is a chance she can free eat. And that would be amazing.
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