My son’s recent up-dose to 150mg of real peanut pieces! After a long journey, this was a HUGE accomplishment!! So happy to be at this place in our OIT journey!
Oral Immunotherapy, aka OIT, is used to treat life threatening food allergies.
About two years ago, I came across a few mothers in an online food allergy group from my area. I soon discovered this new treatment. One of the mothers was already driving several hours biweekly to have her son treated for a severe milk allergy. She was right in the middle of OIT. I was amazed! After a while, one of the mother’s organized an evening to meet and discuss OIT. We all sat on her patio and soaked up all the knowledge we could from this brave mom who was already treating her son. At the end of our evening, we prayed. It was a hopeful and earnest prayer from a group of mothers who were desperate for healing in their children.
I believe that even in the early stages of this process, God was behind it all. The coincidental finding of these local mothers, the one brave mom with all the knowledge and all the rest, it’s all God’s story.
There were two main reasons why this treatment was not an option for my son at the time of this meeting. #1 It wasn’t covered by insurance. #2 The closest doctor was 8 hours away.
Only a few months ago, we discovered that another doctor was added to the list of physicians providing OIT and he was only 2.5 hours from us. Also, he files with insurance. Not only does he file with insurance but, he is in our network, even though he is out of state. The procedures have already been pre-approved by our insurance company. There are currently only about 25 physicians in the country providing this treatment.
I met with one of those same mothers again last week because two of her children are already seeing this doctor and now in the middle of their treatment! She said, “I believe this doctor starting an OIT practice is a direct reflection of our prayers that night on my patio.” God knew I was going to need some major support on this one because he has brought some amazing Godly people into my life who are on the same journey I’m on.
Our start date is May 11th. The treatment itself takes about one year. The first day of dosing takes 6 hours in a room at a hospital. You start with tiny doses, literally invisible, and gradually increase, approximately every 15-20 minutes. Doses are given in clear liquid. The goal is to get to 3mg (still tiny) of peanut by the end of the day. You go home with doses to take at home every day. There are several rules that must be followed. For example, doses must be taken about the same time every day. Also, there cannot be any exercise or activity that gets your heart rate up for two hours after the dose. Studies have shown that this increases the chance of reaction. Also, illness complicates the process. Doses must be stopped during illnesses and you have to backtrack in your dosing. So, you may have worked really hard to get to a certain place, but often have to go backwards.
We will drive back to the doctor once every two week to “up-dose.” Then, travel home and continue our daily doses on our new dose. Once we are eating enough peanut flour, we convert to actual peanuts. By the end of the year, we will be eating around 8 peanuts a day.
This begins the maintenance phase which is ultimately forever. For at least a year, you eat a specified amount of the peanut every day. Sometime later, a food challenge is given where a higher amount of the food is given and observed in a clinical setting. If the challenge is passed, the child often goes on to eat whatever form of the food they wish.
This is the gray area. Doctors aren’t sure about what happens next. A recent study showed that children who stopped consuming the food redeveloped the allergy within 3 months. Therefore, it is recommended at this point to continue consumption of the food indefinitely. But, seriously, who wouldn’t want to eat 8 peanut M&M’s every day?
Am I scared? Yes. I’m completely scared. In fact, more scared than I ever have been about anything in my life. It’s on my mind constantly. I’ve imagined every bad scenario. I’ve had nightmares and near panic attacks. I’m afraid he will have a reaction and never trust me again. But, I’m putting on my brave face. I’m in the process of turning off my worrying and picking up peace.
On the way to our first consultation with the doctor a few weeks ago, I felt like God spoke to me. I was praying and begging for confirmation. This is what I felt Him say to my heart. “It’s just like your pregnancies. You were afraid and there were bumps along the way. But, I sustained you. At the end of each pregnancy, your miracle was delivered.”
I don’t know what this process is going to be like for us. Many children race through with no reactions. Others have constant tummy aches and some have bad reactions. The unknown is frightening.
Here is what I do know. I know that my son can have an accidentally exposure at any moment. Every single day is a risk. The older he gets, the less control I have over the situation. Fear hovers over us. In the news, children are dying from this allergy.
But, no one has ever died from OIT. In fact, 80% of kids make it to the end of the treatment. They can safely eat the very food that would have hurt them only a year prior. This treatment is much more controlled than any accidental exposure without it ever could be. I see pictures of my friend’s child with the milk allergy doing things like eating ice cream for the fist time and my heart skips a beat. They are done with milk OIT. A part of him is free that wasn’t before. I’ve seen many videos of kids safely eating real peanuts for the first time in their lives. I want that for Roman. I want him to conquer this!
All the moms, they say it is the best thing they have ever decided to do. They say it is all worth it x 1000! I have yet to speak with one that says they would go back and not do OIT. They are all very glad they did. All I can do it trust God. How could I not go for a chance to let God use this to heal my son?
As we approach the start date, please pray for these things. 1. Roman’s environmental allergies to not flare up this spring. (This could delay the process or make it hard for us to distinguish between environmental allergies and dose reactions.) 2. Health and strong immunity in Roman’s body. 3. Peace and strength in Roman’s mind and mine. 4. No side effects from dosing.
More post to come on our journey towards OIT!