Initial Consultation

Thursday (July 25th) was our first meeting with Dr. M.  It took us longer to get there than we expected, so we literally strolled in at 5 minutes after our 11am appointment time.  I was a wreck because I hate being late after years of training by my excessively early father (a meal with his family may be scheduled for Noon, but if you're not there by 11:15, you'll get a phone call asking your whereabouts).  Thankfully, no one in the office seemed to notice or care much about our 5 minute tardiness.  I'd say it could have been worse, considering it's a 4+ hour trip with a 4-year-old.  There were many unforeseen bathroom breaks, and believe me, we planned for a few!

The meeting with the doctor went well.  We talked about Sean's history of food allergies, and although our main purpose for the trip was to discuss OIT (desensitization) for his peanut allergy, we talked in detail about his egg allergy.  I'm really glad we did, because I've really wanted to address it further, but our regular allergist is very black-and-white on the issue, and recommends absolute avoidance for pretty much everything.  However, Sean's most recent RAST for egg was only 0.46 and they consider anything below 0.35 insignificant.  So it was really low.  Dr. M. said he was quite certain that Sean could tolerate extensively baked egg, and recommended we try it at home.  He defined "extensively baked egg" as egg that is baked at 350 degrees or higher for at least 30 minutes, so maybe we'll start with something like a cake.  If he tolerates that with no signs of reaction, we are to continue feeding him something with extensively baked egg a few times a week.  This exposure will help him to naturally outgrow his egg allergy faster than complete avoidance.  The doctor only made this recommendation to us because his RAST number was so low and because he had not experienced a reaction since he was two years old.  I don't recommend trying this on your own, as every person's food allergy situation is unique and will require professional advice.  In our case, if he tolerates extensively baked egg for several weeks, then we may begin to incorporate forms of eggs that are less baked, either at cooler temperatures than 350 degrees or for less than 30 minutes.  If he tolerates that well, then hopefully we can eventually get to the types of eggs where the allergy-causing proteins are still intact, such as scrambled eggs and French toast.  Dr. M. was quite confident that he would eventually outgrow the egg allergy, which would be huge. 

Then came the OIT talk.  I had already been reading a lot about the protocols used for this type of treatment, so in general, I knew what to expect.  There is an initial desensitization day that lasts around 7 to 8 hours in the office in which Sean will be fed minuscule amounts of peanut in a solution form every 15 minutes until he begins to show signs of a reaction.  At that point, we will stop and his highest tolerated dose before the reaction will be our "take home" dose that we will administer to him twice daily at home.  He will not be allowed to "exercise" for 2 to 4 hours his dose, which might be tricky because their definition of "exercise" is just regular play for him.  He is just an incredibly high-strung child, so it might be a challenge to keep him still for so long each day.  After his evening dose, he is not allowed to sleep for one hour, and I'm certain I'll still be a paranoid wreck and want to watch him sleep just in case he should develop any breathing difficulty.  

One of the things that stuck with me the most from the visit was when the doctor said, "He will have a reaction."  Logically, I knew that, but I had tried not to think about it.  It doesn't mean he'll have an anaphylactic reaction, but of course that is a fear in my mind.  We will of course stay armed with epinephrine and hope that his reactions are always mild.  

The closer we get to Tuesday, the more nervous I become.  I had difficulty sleeping last night because I was stewing over whether or not I have made the correct decision for my son.  I never want to do anything that may cause more harm than good, and I would never even consider this if I didn't trust the doctors, the research, and my instincts.  I feel like if we do nothing, we're just sitting around waiting for him to have a potentially severe reaction.  But if we do this, I feel like we're at least giving him a fighting chance against accidental ingestion.  And if we're really lucky, maybe someday he'll be able to incorporate peanuts in his diet like a normal person.  I want nothing but the best for my little man, and I just hope with all my heart that this is the best decision.