Oral immunotherapy for peanut allergy?

[marie]

Does anyone have any direct experience with doing oral immunotherapy for peanut allergy? DH took DD1 to the allergist last week and the allergist (at DD1's request) gave them a recommendation for a treatment center.

DH thinks we should go for it and, obviously, DD1 wants to do it. It looks like insurance will cover most of it BUT the treatment center is 3 hours away. So that means a 6 hour round trip every 2 weeks for a minimum of 6 months.

They claim a 95% success rate but I'm still kind of nervous about the whole thing. I just asked DH if he's looked into any reviews of the particular treatment center/doctor or even just downsides to immunotherapy but he hasn't - just going on the allergist's recommendation. He's already scheduled the initial appointment which will include the initial dosing over 6-7 hours (and since we're so far away, an overnight stay).

I guess I just need to let my mama worrying out...My mind just races with the what-ifs - what if she starts to have a reaction on the 3-hour drive home through rural MA/VT? What if it makes her allergy worse?

[nfceagles]

I assume you are talking about NEFATC. I've met 3 of the doctors there and love them. I've also attended one of their presentations when they were first opening and was extremely impressed. The last time I talked to them, all the nurses had children with food allergies. They had a really neat setup for keeping the kids entertained during the visits, such as movies and game systems in a comfortable lobby. I would trust them with my DS. The only reason we haven't done it is because they only do peanuts so far and my DS is also allergic to milk and eggs, so being able to tolerate peanuts wouldn't really change anything for him. He still couldn't eat cupcakes at bday parties (eggs) or go out for ice cream (milk). It's a big commitment and while I'd love the added peace of mind I don't feel like I can put him through it yet without a more tangible payoff for him.

There are a number of practices across the country doing OIT and many of them treat more aggressively than NEFATC. NEFATC is very focused on safety and their goal is only to bite-proof the patient to peanuts. Meaning incidental ingestions (cross-contamination/accidental bites) wouldn't cause a reaction, but there is no goal to achieve complete tolerance (though some patients do). NEFATC's goal for a final maintenance dose is 3 peanuts/day. You need to be able to keep this up forever. It can be hard for kids who don't like the peanuts, but when you get to certain points you can use things like peanut m&ms or reese's cups to make the dose more palatable. There are also restrictions on exercising after doses. So you need to find a time to dose where the child won't be too active for 2 hours afterwards. I think this continues during the maintenance phase too, so potentially forever. Again, it's a significant commitment, but the payoff could be HUGE as you can imagine.

You HAVE to join the Facebook Group titled Peanut Anaphylaxis Cure. It is full of parents who have done it, are doing it, or are considering doing it. Such a wealth of knowledge that group is and I've even seen Dr Factor (from NEFATC) answer questions occasionally. It's not specific to NEFATC. I know I've seen a few people talk about traveling home after dosing. Some ladies on there fly to there centers and some have even moved temporarily. Many would consider you lucky to be within 3 hours of a respected practice. You might want to schedule things so you come down in the morning, spend the day at the office and then stay in a hotel for the night before heading home the next day until you're more comfortable.

I've heard through the grapevine of a few local kids who've succeeded. I have one acquaintance who spoke very highly of the center but her daughter dropped out because she started having some reactions to other legumes. I don't know if they chose to drop out on their own or if NEFATC told them to.

I'm on the other side of Hartford from their office so about 30 minutes away, but if you need any help with the area let me know.

[nfceagles]

I also have the power point slides from the presentation I saw if you'd like me to email them to you. They're from January 2011 so not current, but they still might give you a better feel for what they're doing.

[marie]

Thank you so much for your response nfceagles!

I am indeed talking about NEFATC. You'll probably be getting a PM from me about hotels, etc. :)

I went ahead and sent a request to join the FB group. I had read about it somewhere else but forgot about it - thanks for reminding me.

Yes, we're going into this hoping to be able to go out to eat without grilling the waitstaff, send DD1 to overnight camps, etc. Not hoping for a cure, just a tolerance for accidental ingestion/cross-contamination.

I read on NEFATC's FAQs about the exercise thing. Also, no hot showers for 2 hours.

I find it strange that my child may end up needing to have peanuts with her for her daily dose putting her in direct conflict with no-nut policies...

[MamaMolly]

I'm so grateful OP started this thread. Lula is very interested in doing this, and I'm the scared one. I'm going to request to join the FB group, too.

[georgiegirl]

One of DD's classmates did this. Mom was so excited come Halloween that her DS could trick-or-treat normally.

[SummerBaby]

Wow. Thank you for this post. I had no idea this program was available. We are about 90 minutes from Hartford. I'm really going to think about it. It is so scary though to think about actually feeding her a peanut!

[KpbS]

There have been some very good, helpful BBB posts about this. http://windsorpeak.com/vbulletin/showthread.php?463906-food-allergy-moms-peanut-desensitization&highlight=peanut+therapy

http://windsorpeak.com/vbulletin/showthread.php?444502-Desensitization-Therapy-for-food-allergies&highlight=peanut+therapy

It's on my radar as DS has had anaphylatic reactions to egg and is allergic to many, many foods but most of those are non-IGE mediated allergies.

[marie]

There have been some very good, helpful BBB posts about this. http://windsorpeak.com/vbulletin/showthread.php?463906-food-allergy-moms-peanut-desensitization&highlight=peanut+therapy

http://windsorpeak.com/vbulletin/showthread.php?444502-Desensitization-Therapy-for-food-allergies&highlight=peanut+therapy

It's on my radar as DS has had anaphylatic reactions to egg and is allergic to many, many foods but most of those are non-IGE mediated allergies.

Thanks! Not sure how I couldn't find those. (though I've never been great at searching on more than one keyword on this site :o )