Recently, while looking through some posts in various Facebook groups I belong to, I came across an interesting and unexpected post written by a fellow food allergy mom. She was tired of reading about success stories when it comes to Oral Immunotherapy, or OIT. My initial thought was, wow, this mom is going to get a lot of negative feedback about her post. However, a second later my thought changed to me too! I am also tired of hearing all of the success stories, not because of jealousy, but because it is not an option for everyone. For our family, it does not feel like the right choice. For some insurance won’t cover the procedures, for others, it is not offered by their doctors.
For those who don’t know what OIT is, here is how F.A.R.E. explains it:
The OIT success stories are fantastic. It is incredible to hear about children being able to attend birthday parties and eat whatever they want. Or the teen who is now able to serve food at her local homeless shelter without any fear of coming in contact with an allergen. The best is the boy who gets to eat 2 peanut butters cup every morning to keep up with his daily intake of the allergen (I would love to eat 2 peanut butter cups a day!). I applaud the children and their parents for taking this first step for all allergy families and I admire their bravery. The results are impressive and exciting.
For me, these stories do not free me of my past. They cannot outweigh the memory I have of watching my baby boy, just days shy of his first birthday, look at me with frightened eyes as his throat closed. The idea of giving him peanuts again, rushes me back to the dreaded time the school called to tell me he had just bit in to a peanut butter sandwich accidentally at lunch. These memories and helplessness I feel just don’t go away.
I am sure there are people who are shouting at me right now asking, “Why the heck wouldn’t you try OIT if you have watched your son go into anaphylactic shock multiple times?” It’s not a simple answer. When someone starts the OIT process patients are slowly administered their allergen to see how much they can tolerate until their body rejects it. I don’t want to see my son uncomfortable, frightened, anticipating which dose will cause his throat to close up. His life is already difficult enough, I don’t want him to live with the fear of this treatment too. I don’t want him to spend weeks being nervous or scared. I don’t want to spend weeks being nervous or scared that he will have a serious reaction.
Our allergist is one of the doctors leading the OIT studies and she has spent a great deal of time talking with us about OIT. Each conversation leads me closer to trying the procedure. However, my son Ryan doesn’t feel the same way. He has two school friends treated successfully with OIT and they live freely and no longer bound to the peanut free table in the lunchroom. He cannot forget the past. He doesn’t want to even smell peanut butter, never mind have to ingest something that he has avoided like the plague since he was 8 months old.
When being administered the allergen, doctors and nurses are there to support you. The medical professionals are there waiting to provide epinephrine if needed. But for us, the thought of watching him eat the “poison” we have been telling him to avoid every day of his 12 years is far too stressful. To me, its like saying, don’t play in traffic, No! No! Don’t play in traffic. Oh, never mind, go play in traffic and keep playing in it at your own peril.
When our son was diagnosed with life threatening allergies back in 2004, the only option to keep him safe was strict avoidance. For now, we are going to continue on that path. There is still a lot of research to be done and questions to be answered before we are ready to take the leap of faith. Still, we celebrate those who have graduated from our food allergy world due to OIT. We thank those who have bravely gone before us taking this risk for those living with food allergies. And we hope, for our future, that a cure will come that is a bit less scary, easily accessible and affordable by all of us who are challenged every day with a life threatening food allergy.