We appear to be a pretty normal family trying to let our kids experience life, and for the most part, we are. I let Big Monkey experience everything we can despite his food allergy. He still goes to birthday parties, the zoo, playdates, trick or treating, and to the circus. We just always go prepared (epi pens) and take precautions (i.e. he eats nothing without my approval and we wash hands a lot). So far we've been lucky (or done well) and haven't had a need for the epi pen (we have used benadryl on a number of occasions though). Of course all the worry takes its toll. I hate to see Big Monkey growing up so worried and fixated on food and what's in it. All the precautions we take only fuel my OCD and anxiety issues. Worst of all, I look at Big Monkey's future and the thought that he could have an accidental exposure anywhere down the line that could take his life makes me shudder in fear. I would move heaven and earth to make this last worry go away.
About two months ago, I found a support group that introduced me to the hope of just that. The process is called oral immunotherapy (OIT), and it is a potential "cure" at most and a "safeguard" at least for my son's peanut allergy. Where do I sign up, right? Well, it's not quite that simple. The catch to this great sounding treatment is that it requires a huge commitment, comes with some risks/side effects, isn't cheap, and will take a lot of sacrifice on our part. Here's what we're looking at.
If you're at all familiar with allergy shots, then you can sort of think of OIT as the oral version of allergy shots. On Big Monkey's first day he would be fed a very very tiny amount (think like 1/100,000 of the final dose, which may only be a few peanuts) of peanut flour and watched carefully. He would then have his dose increased gradually until he either showed any symptoms of reaction or until we reached the goal amount for day one. This is considered the "desensitization" day and takes anywhere from 2-8 hours. The goal on day one is to teach his body to not react to the presence of small amounts of the peanut allergen.
After day one, Big Monkey will consume a dose of peanut protein twice a day every day for the next 3-6 months with the dose increasing each week (less often if he shows side effects or has difficulties). If all goes well, then somewhere around the second month he would consume his first whole peanut (um, yikes for mama!). This period of time induces tolerance to the peanut protein. Once he reaches the ability to consume a certain number of peanuts at one time, he "graduates" from the desensitization treatment process and would move into the "maintenance" phase. This phase includes eating 8 peanuts twice a day in the beginning and eventually 8 peanuts once a day. How long these maintenance doses need to be continued is not yet known, but eating 8 peanuts a day (or 8 peanut M&Ms) for the rest of his life would be a small price to pay to be able to attend school without having to eat lunch at a separate "peanut free" table.
Doesn't sound so bad right? Well, it won't be a walk in the park. Each of these weekly dose increases must be done in the allergists office so that Big Monkey can be monitored and properly treated in the event of a reaction. OIT is safe, but it does come with side effects. Side effects often include hives, itching, rashes, runny nose, itching throat, some wheezing, stomach cramps/aches, and vomiting. Anaphylaxis can occur during treatment, but the risk of this over the entire course of treatment is only 1-2%. As far as I can find in the literature, only 1 person has died during OIT and that was due to a dosing error in a clinical trial. Studies have shown that reactions most often occur on the first day, during dose increases, with exercise to close to a given dose, or when the person is ill (fevers, viral infection, etc). Sounds scary to some, but we live every day with the threat of an unexpected deadly reaction, so some vomiting/stomach aches/other reactions in the presence of a doctor doesn't sound nearly as scary.
Giving doses in the doctor's office every week is the complicated part of this treatment. Here is why: there are only a handful of doctors in the US that offer OIT, and of course, none of them are local. The nearest doctor to us is located just outside of Portland, OR. We've done a cost comparison, and traveling every week from home to Oregon would be more expensive than just living in Oregon for 6 months. So, if Big Monkey gets the all clear and is a good candidate for this treatment, the boys and I will be considering temporarily relocating for 6 months.
Why do I say 5 years might be the longest we have to live with the fear from this allergy? Well, because the doctor we are considering starts as early as age 4. After the New Year, we will have Big Monkey component tested (using the uKnow peanut test) to see what peanut proteins he is allergic too. If he is allergic to the proteins that cause anaphylaxis (we haven't had an ana reaction to date, so we don't know), then we will schedule a consult. If the OIT allergist says we're a go, then hopefully we will start sometime in 2013!
Of course the best thing in the world would be if we went in to the allergist and they told me his test results show he's no longer allergic at all. Here's to hoping!
No comments:
Post a Comment