Well, the happy tears have dried and reality has set in a little bit. It's so funny how initial excitement can cause you to prematurely accept something and then later you realize the consequences, the implications. Not funny, funny...but funny. A buyer's remorse feeling, I guess.
Most people hopefully searching for OIT come to realize a few things:
1. It can be expensive at a dedicated facility - $5000 is a common figure
2. Facilities and doctors are few and far between.
3. The dosing regimen and open-ended end date make traveling long distances difficult
4. Not everyone thinks OIT should be performed in-office
As I sat with the Mr. Last night, we thought about how this would affect our family...all 5 of us and realized that without a local doctor to do OIT, traveling the 8 hours roundtrip 2 x's per month isn't something we can do right now. Being a stay at home mom of 3 boys means my husband would be taking the day off to watch the other boys at least twice per month, Perry would miss school twice per month and without a definite end to the program in site, this could be our "normal" for 12-24 months.
I called our current allergist today to ask her if she would be willing to start the therapy in their office and she kindly said no, BUT she did say that she believes peanut desensitization will become more commonplace in the next 1 to 2 years. She suggested that, for now, I put my name on as many trial waiting lists as I can in our area...and that I will do. Keep fighting the good fight with a phone and insurance card in my hand!
We did get some weird news today...Perry's latest RAST scores are in...
His peanut score dropped from a 6 to a 3.2!!!!!!!! The doctor said it is still possible he may surprise us and outgrow this allergy! I'm super anxious now to get his uKnow results.
He's ready to food challenge the cashew allergy!!!!!!! Wow!! Exciting! Setting up the appointment for that today.
Weird news: he's developed a hazelnut allergy? Out of left field for sure! I used to give him Nutella all of the time (man, that stuff is gooooood), but switched to a cocoa almond butter a year ago or so. The allergist seems to think it is because I stopped giving him hazelnuts that this happened. She suggested I give him the nuts he is not allergic to somewhat frequently to keep his resistance high. I'd love to hear some opinions/schools of thought on the subject. I know some PN/TN allergic moms are probably shouting "Nooooooooooooooo!" at the screen right now.
That sucks, but it makes sense to not be dragging the little guy on huge trips all the time. It is good to know that it exists anyway and hopefully it will be in your area soon!
ReplyDeleteAs an aside, David actually has a very mild hazelnut allergy. His throat gets itchy and it feels like it has "crud" in it and if he has enough he gets wheezy. Just thought you might want to know that it does exist elsewhere in the family :-)
Whaaaaa? Have I heard about this before? I had no idea! That's what happens to Perry, too...early signs of anaphylaxis. Does David avoid them?
ReplyDeleteI think when the other two boys are in school, we will revisit the idea of the drive if there is still no local options :-)
The Mom... You must visit me on FB... https://www.facebook.com/Maddys7yearitch .
ReplyDeleteThere may be more options available to you.
What city are you located in? There are more docs doing OIT than you realize and more popping up all the time. It may be possible.
Thanks, Sara! I do follow you on facebook and will definitely check to see if I missed something! I double checked my investigating on Peanut Anaphylaxis Cure - they had a OIT directory posted - and didn't find anything here in the DC/Baltimore area. Surprising, right?
DeleteOur allergist said she thinks it will become more mainstream in the next year or two, so I have hope that if I can't find one before then, she may be willing to use the therapy before too long. We just got Perry's uKnow test back and he is positive for the protein that causes severe reactions, so I am starting to become a little more desperate to begin OIT.
I love reading about Maddy! She seems like sunshine :-) Thank you so much for your comment!