More pokes, more surprises, more questions
Today was a day full of surprises, good and bad. I took both kids to see Dr. B., a Pediatric Allergist with an impressive resume. We got the referral from Dr. P., our “miracle maker” Pediatric Gastroenterologist. Dr. P. got Annika’s GERD under control, something our prior Pediatric GI failed to do for nearly three years, and we love her (OK, not really, but almost) and very much respect her and trust her recommendations. Dr. P. suggested we go see Dr. B. to atopy patch test (APT) Annika for her suspect foods in order to zero in those causing her GERD and contributing to her asthma, since we were still just guessing at that point. She told me that in recent years several research studies were published demonstrating that APT testing was useful in identifying and predicting the potential severity of immune response to food allergens in pediatric patients like Annika who had gastrointestinal symptoms. Based on Annika’s prior SPT and RAST results (mostly negative) and her symptoms, we were assuming that her allergies were cell-mediated rather than IgE-mediated.
Bottom line, I decided to bite the bullet and get it done, even though I knew it would be a major PITA. First, it was difficult to get an appointment at all. When I called in October I was told the earliest (and last in 2008) opening was in mid-December. I took it. Making the appointment required a lot of pre-planning. I had to get flight reservations to the East Coast ten days before Christmas. I had to pull Annika out of school one week early. Since Marc could not take early vacation from work, I had to fly solo across the country (two four hour flights) with two small children (something I always swore I would never do and now swear will never do again). And then I had to pack the car and take a three hour road trip with two kids that hate long car rides, dragging my poor mom along with us.
But we made it. And so when within the first thirty seconds of chatting with Dr. B. I found out that she did not do APT testing, that two of her colleagues in the department did that, I was not happy. Dr. B apologized for the misunderstanding and told us that if we really wanted to do APT, we would have to start from scratch (no pun intended), with one of the other doctors, come in on a Tuesday for a “first” appointment, then again on Friday for the testing, and the following Monday to get the tests read. And of course, both doctors were gone for the remainder of the year, so we were out of luck. So that was surprise number one for the day.
Surprise number two was also not a good one. As it turned out, since the lab that did Annika’s RAST test did not do the Gold Standard ImmunoCAP RAST test, “the only specific IgE assay to receive FDA approval to quantitatively report to its detection limit of 0.1kU/l”, the results were useless and poor Annika getting poked with a big needle and having three tubes full of blood drawn was all for nothing. I was very upset about that (and made a mental note to berate our Pediatrician’s office for using a laboratory that does non-standard testing), because I had promised Annika she would not have to be poked again after that time, and certainly not at the visit today. Well, it turned out that I had lied. Not only did Dr. B. suggested we skin prick test (SPT) both kids for the top eight, she suggested we also ImmunoCap RAST test them for any possible false negatives or borderline positives, to make sure we don’t miss anything. Oy!
This is what skin prick testing (SPT) looks like once the “pricking” is done. It hurts when it’s done and itches after.
After brevely enduring much poking (she flinched every time, poor kid) of her back while watching 101 Dalmatians on video, Annika started complaining about feeling itchy. Her back became covered in red blotches and raised welts and more surprises for us. She tested allergic to peanuts, but only moderately so (surprising since it was her major reaction last time we did this). Her most extreme reactions were to tree nuts (not too surprising), but also shellfish and tuna, a big surprise, since neither of those allergens were even on the radar for us before. She also tested allergic to soy and apparently did not test allergic to dairy (something I forgot to ask about). We were advised to eliminate all nuts from the house and to very strictly avoid any foods that may be cross-contaminated with tree nuts and peanuts, so nothing with “shared equipment” or “made in a facility that…” processes tree nuts or peanuts warning labels. We also now have a specific food allergy action plan to help us decide what symptoms should lead us to using the EpiPen (we carry the “Junior” version) in case of a bad reaction.
Dr. B. favors an aggressive approach to the treatment of asthma, so she strongly recommends the use of steroids like Flovent and nasal sprays like Veramyst (fluticasone furoate) or Nasonex (mometasone furoate monohydrate) over NasalCrom (cromolyn sodium, a mast cell stabilizer that has been used for the management of asthma in patients sensitive to steroids). She told us that recent research has shown that cromolyn sodium was no more effective than placebo. I am not sure how I feel about that.
Annika’s Naturopathic Doctor suggested we try NasalCrom in addition to Singulair, and I see no risk in continuing to use it if it can reduce our dependence on the steroids. I hate to see Annika on Flovent. She reacts so badly to it, she’s so out of control she actually talks about not being able to “stand this”, as she said midst fit today (she’s been on Flovent for three days straight). The asthma and environmental allergy management protocol Dr. B. shared with us unfortunately would have us get rid of our kitties. I am devastated, but will do what I have to do. A friend offered to take them, so it may make it easier, but I’m very sad about it. I still have some hope, since after drilling Dr. B. on this matter (I brought up all my PubMed research on the issue), she did not have a clear answer for me, except to say that there’s research supporting the argument for and against having cats at home. But realistically, we have to at least test this, so at least the kitties need to take an extended vacation somewhere. I wish there was a better way.
Max tested all negative for the top eight allergens, but his immune system is still developing, so given that he definitely is reacting to egg, soy and cow’s milk proteins in my diet, Dr. B. said that they are most likely false negatives. She did confirm that the scaly patches on his body and head are indeed eczema and instructed me on how to care for it. I know that strict avoidance of the suspect allergens clears it up, so will just have to be good for his sake. No cheating allowed. Sigh. And Dr. B. felt that he was likely allergic to eggs, so prescribed an EpiPen for him too. Oy!
In the end it seems most of Annika’s reactions are IgE mediated, so the APT may not make sense for her after all. Tomorrow we’re doing the blood draw to test for the other allergens. I’m nervous, but was assured there is staff dedicated to doing Pediatric blood draws. I hate seeing my kids poked and prodded like that, but hopefully better data will lead to better prevention and better treatment for both. Dr. B. took a lot of time with us and communicated with Dr. P. to make sure they (and we) were on the same page. She also made concrete recommendations on how to go about finding a good allergist closer to home and took the time to mention some of the top allergy researchers’ names for me to look up. I did learn in the process that there are several “schools of thought” as far as food allergies go, so plan to investigate further to optimize the kids’ treatment plan.
So in the end I feel like the visit turned out to be very useful despite the original mix-up, and that was the final (and good) surprise for the day.
