This is the third post in a short series chronicling our search for treatment for food and environmental allergies and asthma. You can read Part 1, The Fall I Gave Up on Food Allergies here and Part 2, Looking for Treatments here.
“What kind of dad would I be if I said ‘no’?”
This was Adam’s response after I had spent much of a rare evening out casting my vision for pursuing treatment so that Zachary could one day live a life free of his multiple severe food allergies.
I let my breath out in a woosh, and nearly cried right there. I felt humbled by his response – as if I had expected for some reason that I would have to fight for something that I had quite possibly forgotten was so important to both of us.
Perhaps I felt it would be easier for him to be more practical – logical – knowing that any treatment we might seek – outside of a clinical trial – would be fully funded from our own pocket. See, at this point, none of the treatments currently available are FDA approved. No approval means no insurance coverage and those seeking treatment must pay all on their own. Hence my full expectation for logic from my long-range, financially savvy hubby.
We went home that night, just a year ago, to dig in further to our research and discussions about the track we felt was right for us to take.
At this point, we had two treatments under consideration:
Oral Immunotherapy (OIT) – essentially allergen desensitization by ingesting small amounts of the allergen on a regular basis under the direction of a board certified allergist. We are lucky enough to live 20 minutes away from a fabulous, well-respected OIT allergist who happens to be the only one in Illinois.
Traditional Chinese Medicine – resetting the immune system to address asthma, environmental, and food allergies all at once. This would be done under the care of the renowned Dr. Xiu-Min Li who is affiliated with Mt. Sinai Hospital and practices privately in New York.
This discussion lasted a couple of months for us as we researched and connected with people who had pursued either one or the other of these treatments. Outlining the pros and cons helped us determine fairly quickly which treatment we felt most comfortable pursuing.
Once we knew how we felt, it was important for us to talk with Zachary about the idea of treatment, what treatments were available, and what would be required of him in each scenario. At age eight, he was coming to truly understand what we were talking about and the implications it would have for him. We felt strongly that no matter what we pursued, he ought to be part of the decision-making process if only to ensure he fully embraced the treatment from day one all the way through to completion. We talked at length about each one, the pros and cons we had outlined together, and then we let him think about it.
Initially, when we first discussed it with him, he was not interested in treatment at all. He felt just fine with living a life of full allergen avoidance. As his mom, I had to be okay with that. I left the door open for him to talk about it whenever he wanted.
One day after school, though, he came home with something clearly bothering him. “Mom, they were handing out cookies at school if we did this computer survey – everyone could have a cookie but me. I wish I could have had a cookie.” Although I was disappointed for him, I saw an opening and said quietly, “That’s why Dad and I are looking at treatments for you; how do you feel about that today?”
“Mom, I want to do that. I don’t want to miss out anymore.”
Next up: Making a Decision