Ella's Peanut OIT journey
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| Dose 1!! |
What is OIT? It's oral immunotherapy. Think of it as allergy shots, but with peanuts :) It has been around for a decade but when it started it was just a few doctors doing trials with a few patients. Now, it has become widespread through much of the country and many more doctors and hospitals are jumping on board. There is more data and experience so the treatment is available to more and more people that are suffering with life-threatening food allergies. I have been keeping up with this treatment for ten years, waiting for a doctor that was within four hours of us so we could be seen. Finally, I heard that CHOP (Children's Hospital of Philadelphia) was going to start the program. We immediately signed up. Actually, I signed her up years ago for peanut studies so she was already on the list. We got lucky :) There are now 1000s on the waitlist!
The idea behind OIT is that you begin with a "food challenge". The patient must eat a very small percentage (1/100th) of a peanut (or other food), wait 20 minutes, eat another small amount and continue this until the patient starts to feel queasy or sick. One only needs to take two doses - which Ella did - to make it into the program. If the patient needs to use the epi pen during that time, then they can not continue with OIT because the dose can't get any smaller. We thought, part way through ella's dosing, that she was going to need the epi - but thankfully she did not. It got a bit emotional at times, but she powered through!
Now, over the next 6-9 months, she will "dose" every day. There are restrictions and rules to keep her safe, so our lives will be different over the next year or so. Every evening when she doses, she can not do anything to increase her heart rate for almost 3 hours. In addition, we will be traveling to CHOP every other week to increase her dose. Once she gets up to 1 peanut, she will be done. Being able to successfully eat one peanut means that could accidentally ingest up to 5-6 peanuts and be ok. To keep up her immunity, she will need to eat one peanut m&m as "medicine" most every day for the rest of her life (there are certainly worse things! lol). So, by going through this intense process for 6-9 months, she will be protecting herself the rest of her life from accidental ingestion. Pretty awesome! She is going to blog about her experience for the next 6-9 months so that other kids and parents can see what it's like. I will add my "two cents" when needed and I'll be the photographer :) Take this ride with us and share it with other children and families that are suffering with a food allergy. It is a fear that no one should have to live with every day - especially when there are treatments available!
From Ella...
Me waiting for the
train going to
Philadelphia
Me on the train
chillin'
waiting for the doctor
to come get us for the
treatment
Finally eating my fist dose of peanut! It's mixed with chocolate pudding :)
Me on my Ipad and
watching Dora
Getting *real food after
my second dose of
peanuts
watching Harry Potter waiting
to see if i react to the
peanuts
My great nurse Meredith
she took care of me :)
Swimming and relaxing at the pool at
our hotel after the
hospital
I really enjoyed today. It was a little more complicated at first because there were a lot more people than i expected, and i didn't know I would react as much as i did, but it still wasn't that bad. I know the longer i do it, the more i will get used to the peanut doses every time I come.
-Ella
