OIT update

[noodleoo]

I was going to post this in the randoms, but its pretty long so I figured I'll just post separately.  I posted last week that we had our first oral immunotherapy (OIT) visit to treat DD2's cashew allergy yesterday. It was rough. I was perhaps overly optimistic that she'd tolerate the doses without reaction and it would go smoothly. It started out ok, we made it through 3 out of 6 doses. They start out with the lowest dose, wait 15 mins to check for reaction, then proceed with the next. This is how they establish her tolerance and where to start with daily dosing at home. Right before we gave the 4th dose, she said her stomach hurt so I took her to the bathroom. She proceeded to throw up multiple times (thankfully it was in the bathroom and not in the bed!). Then she started sneezing and itching her ears. Since it was multiple systems (GI and ears/nose/throat), it was an anaphylactic reaction and they administered epi. It was so scary and shocking how quickly it came on. It was basically my worst fear realized. Thankfully one dose of epi was effective and they then monitored her for an hour to make sure all symptoms resolved.

Immediately afterwards I was like, that's it, we're not doing this. However, OIT is still the best hope of treatment for her allergy and success is greater when they are young. The allergist seemed unphased by it. He said it happens sometimes, but seemed confident that she should be able to tolerate the lower dose at home. But I'm scared.   I plan to do it in the evening tonight so that we can watch her closely for the 2 hour observation period (he said the first hour is the most important).  I hope this gets easier, the buildup process is 6+ months of this plus updosing every 2 weeks.  I feel like I'm going to be a constant ball of stress for the next year.  

H took the kids to swim lessons last night and I watched the new Bluey episode again and ate an entire sleeve of Oreo cookies.  LOL to selfcare.  I will probably also gain 20 lbs from stress eating the next few months.

meowmaps

[lavenderblue]

I don't have any personal experience with this, but my friends son went through this and has been very successful. I hope the same for your DD.

[dish2501]

Thanks for sharing. This is something we want my DD to do but she’s not interested. How is your DD feeling about continuing?

[noodleoo]

Apr 23, 2024 8:47:43 GMT -5 dish2501 said:

Thanks for sharing. This is something we want my DD to do but she’s not interested. How is your DD feeling about continuing?

DD2 is 5 so I'm not sure how much she understands what we are doing.  I've tried to explain it ("we're trying to teach your body to not be allergic to nuts anymore"), but not sure she gets it!  I'm worried she won't want to eat the dose tonight.  I probably wouldn't after how it made her feel yesterday.  We gave it in chocolate pudding, which is a treat for her and she liked, but I know I've been turned off foods after having a bad reaction to them.  So I guess we will see.  

[meowmaps]

Thank you for sharing and for tagging me. I’m so sorry that her first appointment was so scary. I’d be right there with you eating the sleeve of Oreos. I’m an emotional eater which would explain the extra weight I’m carrying around. (Sorry to divert from the main conversation.)

As pp said, how does your daughter feel? I want DD2 to be safe and don’t necessarily trust other people/the outside world to keep her safe, which is why we’re looking into OIT. That said, if DD2 told me that she didn’t feel comfortable or didn’t want to do it I’d reconsider. Science is amazing and hopefully there will be more and more advances in the future.


ETA: I see you answered about your daughter’s reaction to the process. I hope she does well tonight. 🤞🏻

[gretchenindisguise]

I did OIT and had a reaction to step 1, so had to start with essentially 1/2 of step 1. I successfully completed. I had to go slower than normal but made it safely.

I'm hopeful for your daughter!

[coacctnative]

noodleoo, We've been there with my DD, we tried OIT for peanuts. She made it through the 1st updosing appt with no reaction, then we did the dose the next evening and everything went sideways. We ultimately decided OIT was not for us. Fingers crossed for you and your DD - it's definitely a time and emotional commitment.

[noodleoo]

Apr 23, 2024 9:04:29 GMT -5 meowmaps said:

Thank you for sharing and for tagging me. I’m so sorry that her first appointment was so scary. I’d be right there with you eating the sleeve of Oreos. I’m an emotional eater which would explain the extra weight I’m carrying around. (Sorry to divert from the main conversation.)

As pp said, how does your daughter feel? I want DD2 to be safe and don’t necessarily trust other people/the outside world to keep her safe, which is why we’re looking into OIT. That said, if DD2 told me that she didn’t feel comfortable or didn’t want to do it I’d reconsider. Science is amazing and hopefully there will be more and more advances in the future.

Thanks, I posted above but I agree, we will stop if DD2 says she doesn't want to do it.  It is such a huge commitment, I had a hard time with making that decision for DD2 (technically to stay desensitized, they have to continue to consume the allergen daily for life).  It is overwhelming to think about it all at once, so I've been telling myself we will try it but can quit at any time.  I'm trying to take it one step at a time.

[meowmaps]

Apr 23, 2024 9:14:34 GMT -5 noodleoo said:

Apr 23, 2024 9:04:29 GMT -5 meowmaps said:

Thank you for sharing and for tagging me. I’m so sorry that her first appointment was so scary. I’d be right there with you eating the sleeve of Oreos. I’m an emotional eater which would explain the extra weight I’m carrying around. (Sorry to divert from the main conversation.)

As pp said, how does your daughter feel? I want DD2 to be safe and don’t necessarily trust other people/the outside world to keep her safe, which is why we’re looking into OIT. That said, if DD2 told me that she didn’t feel comfortable or didn’t want to do it I’d reconsider. Science is amazing and hopefully there will be more and more advances in the future.

Thanks, I posted above but I agree, we will stop if DD2 says she doesn't want to do it.  It is such a huge commitment, I had a hard time with making that decision for DD2 (technically to stay desensitized, they have to continue to consume the allergen daily for life).  It is overwhelming to think about it all at once, so I've been telling myself we will try it but can quit at any time.  I'm trying to take it one step at a time.

I’ll be thinking about you all.

[dancelnow]

I’m doing shots, not oral treatment, but same idea. My allergies are something I’ve never had multiple system reactions to so I thought I’d be totally fine. I even did the “rush” start where they give multiple escalating doses over the course of a day.

But one random day I had an anaphylactic reaction. It came on so fast, no warning coughs or anything, that it’s truly scary. But the epi worked (I needed 2 doses).

My nurses and doctor were very comforting and reassuring that it could be a traumatic experience and to be easy on myself for it. In your case, I would say be easy on yourself for “putting her through it” and reassure her that while sometimes this treatment could be scary, you are right there to help immediately.

For me, I feel fine while sitting there waiting, but when I get up and start moving sometimes I start feeling a reaction, so watch out for that at home.

[mcppalmbeach]

Oh bless your heart. That sounds really scary. Hugs and more oreos to you both.

[mala]

Oof, I'm sp sorry the first time ended that way! The panic I felt starting OIT was intense, and Little Kid has a comparatively minor response. I can imagine how tough it is with an anaphalactic reaction. It does get better & easier with time, but it's also ok to stop for now and reasses in a year or whenever you are all ready.

[rhian]

I'm so sorry that the first appointment was so difficult! I totally understand the stress and questioning whether continuing is the right choice.

We have fortunately not experienced anaphylaxis but a friend who has with her kid said that focusing on the effectiveness of the epipen, rather than the scariness of the anaphylaxis, was helpful for her. She said that seeing how well the epipen worked helped her be less afraid of possible anaphylaxis than before she had seen it, since she knew that epi was effective and quick. Maybe trying to think of it that way would be helpful to you, too?

And I agree that any decision you make is totally okay, whether that's to continue, determine it's not the right thing at the moment but leave open the option to try again later, or take it off the table entirely.

Thinking of you all!

[noodleoo]

Apr 23, 2024 12:13:20 GMT -5 rhian said:

I'm so sorry that the first appointment was so difficult! I totally understand the stress and questioning whether continuing is the right choice.

We have fortunately not experienced anaphylaxis but a friend who has with her kid said that focusing on the effectiveness of the epipen, rather than the scariness of the anaphylaxis, was helpful for her. She said that seeing how well the epipen worked helped her be less afraid of possible anaphylaxis than before she had seen it, since she knew that epi was effective and quick. Maybe trying to think of it that way would be helpful to you, too?

And I agree that any decision you make is totally okay, whether that's to continue, determine it's not the right thing at the moment but leave open the option to try again later, or take it off the table entirely.

Thinking of you all!

Thanks, all!  Reading your comments of support has meant a lot.  It is hard to explain how emotional this has all been. 

That's true, if she was going to have a reaction I'm glad it was at the hospital with everyone ready to take care of her.  That's been my biggest fear all along with the allergy, that I wouldn't know what anaphylaxis looks like or when to use the EpiPen.  I feel like I understand it a lot better now and will be less likely to panic if she has a reaction at home.  

[mala]

I'll also add that as you go through OIT, in my experience, the anxiety does lessen. Little Kid is sitting at 6 peanuts a day with no reaction, and we're allowed to have peanut butter in the house again. The anxiety about it hasn't gone away, but I am much more comfortable about her with peanuts and significantly less anxious about her having a reaction at school.

[dish2501]

Good luck with the next dose, noodleoo. I hope this all goes smoothly for you and her!

My DD is older and a very cautious kid, I think partially due to being on alert for her allergies.

[court26]

Apr 23, 2024 13:13:03 GMT -5 mala said:

I'll also add that as you go through OIT, in my experience, the anxiety does lessen. Little Kid is sitting at 6 peanuts a day with no reaction, and we're allowed to have peanut butter in the house again. The anxiety about it hasn't gone away, but I am much more comfortable about her with peanuts and significantly less anxious about her having a reaction at school.

I’m here now after all of the allergy treatments DS has been through (including OIT). I still worry, but some days I actually forget how stressful it was.

[court26]

I’m so sorry your first experience was so scary. My DS did not have any reactions, but he updosed and waited in a room with other patients and we definitely saw it with others. It also reminded me why we were there as such a tiny amount could wreak so much havoc on the body. It seems like you have a decent support group on this board! Hope it works out for her!!

[noodleoo]

I think we’ve survived the first home dose (knock on wood!). It’s been about an hour and she seems fine. PHEW.

[Poppy]

Oof, that is scary. So glad that the epi worked and that the home dose went ok!

We tried OIT for my son's peanut allergy and had to stop after a while because of EoE (manifested as difficulty swallowing). It was a huge commitment and I'm bummed that we went through months of it before failing out. However, I am glad we know now and that we tried. That bite safety is huge.

Hopefully your doc is on top of all this, but make sure you call before dosing if your kiddo is sick or has lost a tooth recently (or has any other mouth wound). We had to drop doses many times due to those things, which made it take so much longer.

[vamoose]

Thank you for posting about this. My 13 year old son is allergic to peanuts and tree nuts and we have heavily considered this route. He is very, very against it though (all those years of drilling in the danger of nuts worked). I’ve been considering if this is something where I need to take a hard line as a parent and have him do it for his health. But this sounds like a process where the kid really needs to be on board.

I hope the process works for you.

[jg183]

my son has been in OIT (peanut) maintenance since age 4. He just turned 12. It's a rollercoaster for sure and the updosing is rough but the first day is definitely the worst because you are literally seeing how far the body can go.
We have tried egg OIT multiple times and gotten about half way and my son's anxiety gets in the way which is a whole 'nother thing and now his dr wont do it without him wanting it

[jg183]

OH and we learned to bring changes of clothes for BOTH of us after I got barfed on the first time

[jg183]

also as scary as the anaphylaxis is- it can be good to see how the body responds when it happens. We didn't need to epi because we were at the dr (would have at home for sure) they were ok monitoring, but watching it all unfold did answer some questions.

Also as your kid gets older food allergy anxiety is a real thing- we are really struggling now and unfortunately the therapy isnt as prevalent as you would hope but so many years of avoidance has caused a lot of anxiety, ocd and paranoia for my son

[dreamcrisp1]

Ah. I’m sorry. That’s so scary. I hope that the rest of the treatments go well and less dramatic.

[noodleoo]

Apr 23, 2024 19:30:30 GMT -5 jg183 said:

OH and we learned to bring changes of clothes for BOTH of us after I got barfed on the first time

Smart!  I brought clothes for her but forgot socks, so she went home sockless.  Luckily it didn't get on me, but good to remember for her updosing visits.

[scm1011]

Good luck, noodleoo! DS' bestie has been doing OIT for years with a good deal of success (but not without struggle/setbacks!). He had a severely limited diet due to multiple severe allergies (all nuts, eggs, sesame, poultry, others I'm forgetting) and can now eat nuts, sesame, and cooked egg. Its been life changing for him and his family.