My name is Jessica Davis and my son Dylan was accepted into the OIT Program this week after being on the waiting list for six months. Please read our story and consider helping us in our journey. Any amount helps!
I woke up in the morning from a long, full night of sleep. There was screaming in the other room and I knew it wasn't just Dylan in his crib calling for me; this was different. He was 9 months old and this was the first time he slept through the night. Why was his screaming so frightening?
I ran into the room and there he was, eyes swollen shut, arms reaching out for help, and of course, I KNEW; this was my first real-life experience with anaphylaxis.
Later that day after his first blood test, which he took like a champ, we found out the results. Food Allergies: Peanuts, Walnuts, Wheat, Eggs, Milk, Oats, and Corn.
To start at the beginning, when Dylan was little he didn’t sleep well; not like how babies don’t sleep well, he literally didn’t sleep. He always seemed uncomfortable and cried ALL.THE.TIME. He had rashes on his skin, he looked as though he was swollen, his cheeks were bright red, the top of his head was scaly, and his skin was dry and itchy. Dylan wasn’t a thrilled little guy.
At three weeks old we had Dylan on formula because the doctor thought he had an allergy of some sort. After testing many formulas we landed on ‘Puramino’, which cost us around $600/month and was only available on Amazon at the time. It helped.
When we began to introduce foods, we quickly found that he was allergic to oatmeal and then realized that we were using Aveeno products on his skin, which contributed to his uncomfortable looking appearance. (Bye-bye Oatmeal products). It helped.
When we wanted to start solid food, we started with soft premade Ravioli. He was around 9 months old. Dylan loved the Ravioli but after about 5 minutes he started to cough. Immediately I knew – this was an allergy. I quickly administered Benadryl (not knowing much about food allergies first hand) and it ‘helped’. Once he drifted off to sleep, I checked on him every three minutes for two hours. He seemed fine – phew!
The next morning our lives forever changed.
"You'll never know how hard it is to answer the operator on the line to "911 what's your emergency" until you have to do it for your baby… (A comment I wrote on a post from Instagram in 2014)
Dylan is a rad kid. He’s rowdy, mischievous, entertaining and most of all; he’s smart as hell.
Dylan has confirmed anaphylactic food allergies to Peanut, Tree Nuts, Gluten, and Eggs. He has milder allergies to Oats, Sunflower butter, Chocolate, and Tomatoes. We suspect he is allergic to fish and shellfish and has been told to stay away until further notice.
Our home is 100% Dylan safe. Dylan loves to cook and take control of what he can and cannot eat. Dylan is proud to be an allergy kid (most days) and is extremely aware of how his life is different. He takes caution and wants to take control of his food allergy journey – and he’s only five.
Just starting Kindergarten, sitting at an ‘allergy free’ table, trying to make friends, and having to remain aware of everything around him is a lot for a kid to handle, but he takes the bull by the horns and walks through life with his head held high and more confident than I ever was.
Every six months to a year Dylan goes in for allergy testing. It’s long, emotionally draining, and stressful for everyone. We often receive similar news to preceding appointments but it’s done to make sure that we are keeping Dylan as safe as possible.
At five, Dylan loves swimming, tennis, playing on the playground (any playground), and he loves to cook. Dylan is the class clown and is always doing things to make people laugh. He’s ridiculously funny and says things that have you rolling on the floor. He isn’t patient, he isn’t quite, and he for sure has a temper (thanks to his Daddy). He’s loyal, confident, very emotional, and he knows that his food allergies have helped to shape him into a kinder person and he’s changed our lives tremendously.
I’m sure you’re wondering - what is OIT?
There are several types of immunotherapy but Oral Immunotherapy is what OIT stands for.
I’m sure many of you have heard of allergy shots, right? Allergy shots have been done in the U.S. since 1911, despite never having undergone clinical trials and FDA approval, and have an effectiveness rate lower than OIT.
In 2017 it was stated that Oral Immunotherapy (OIT) is the only “PROVEN SAFE AND EFFECTIVE” food allergy treatment that will completely desensitize a patient and lead to tolerance.
Over the past 10-15 years, research has provided compelling evidence of the impact of food allergies in the United States. Up to 15 million Americans, including 1 in 13 children, have a food allergy, and that nearly 40 percent of these children have already experienced a severe or life-threatening reaction just as Dylan has.
Other studies have revealed that the economic burden of food allergies and their damaging effect on families’ quality of life are tremendous. You can’t imagine how stressful having, knowing, or loving someone with food allergies is and how financially debilitating it can be for many. It’s a battle every day.
During OIT, the food allergen (a commercially manufactured powder mixed with a harmless food) is administered slowly, in small but steadily increasing doses, until the patient is desensitized to it. This is done over a period of 4-8 months of time.
Early clinical trials have demonstrated that OIT is safe and that it is effective in 70-80 percent of patients, provided that it is properly administered in a controlled setting.
OIT is not currently FDA-approved and therefore insurance does not cover any cost.
Six months ago our name was placed on a list for OIT (up to a two-year waiting list in many cases) and we received our call September 6th 2018 that we got in!
Now, we’re asking for your help. OIT’s cost is immense, but the cost of not doing OIT could be much greater.
It’s $250/hour for each allergen that can take up to six months of time to ‘overcome’– remember I said for each allergen.
We are staring with Peanuts. The initial visit is five hours ($1250) and then we continue once a week for 1-2 hours for up to six months. Dylan will have the opportunity to conquer five allergens over the course of the next few years if all goes well.
The other day Dylan said to me in the kitchen “Mom, I wish that my body was different and that I wasn’t allergic to food - it’s hard.”
I wanted to burst into tears. He’s five years old. It’s so hard to explain, not only to him, but it’s hard for us to understand why this is part of our lives.
We are more than grateful to have a healthy, happy, growing little boy. We feel fortunate, I promise.
Don’t mistake us though in thinking there isn’t always that feeling of trepidation when sending Dylan to school, going to a birthday party, taking a vacation, or doing anything else many people would deem to be ‘normal’.
Dylan’s life is far from normal. Yes, we live it. Yes, we are proud. Yes, we are courageous. Yes, we are grateful.
We also know and live with the unfortunate reality of having food allergies. The reality is that someone somewhere could make a mistake, Dylan could touch something on a doorknob, a manufacturer could mismark their allergy statement, the pharmacy could have a shortage of Epinephrine and we live in a world of ‘what if’s’.
Dylan leads a very different life than every other friend he has. Every. Other. Friend.
We live a very different life altogether.
We know that this treatment will NOT cure him but it might permit him to have less worry that one accidental bite of an allergen could cause him to lose his life. We hope to make his life easier and we hope that you can help us make it happen.
Please consider donating any amount at all, every dollar matters.
We are grateful for the opportunity to share our story with you.
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