Doctors-a-go-go

We’ve talked to several doctors recently… our own pediatrician, who admitted there aren’t any experts on food allergies in Marin or SF (as an aside – WTF?!?!), but will review our research notes and try to get us some info; the doctor in Portland (who wanted to review the boys records before he would consider even seeing us, and who said he’ll treat tree nuts); the doctor in Dallas (who is doing the treatments, but thinks he can’t get a ‘safe/clean’ source for tree nuts, so isn’t doing them); and our own pediatric allergist, who is, sadly, not cutting edge when it comes to food allergies, but he’s the only thing going in Marin.

Now, through a series of conversations that led to new information, we are now in touch with a doctor (Dr. Kari Nadeau) at Stanford who has apparently morphed her nut desensitization trials (from research trials with criteria that excluded A&A previously) to studies (including for tree nuts!) they might be eligible for. I am harassing pretty much everyone involved in order to get the boys in. At the same time, the doctor in Portland (Dr. Baker) reviewed the kids’ medical records, and agreed to meet with us, so we have an appointment in Portland at the end of August (when we were planning to go up to visit my brother & his wife anyway). I also spoke to a local mom who moved her family to North Carolina a few years ago to put her son through a peanut research trial there, who told me about the process. She said it was pretty rough and exhausting, and that they get more sensitive before they are cleared, but he’s now peanut allergy-free and has to eat peanuts every day. It’s all exciting and nerve-wracking and we’re continuing to push forward on all fronts.

One of the things that makes me push forward is moments like this, from today:
I’ve been emailing back and forth with a mom of one of Ari’s classmates, who is having his 6th birthday party this weekend. She was thoughtful enough to ask me about where they could get safe pizza, to help create a safe environment for Ari, and then we traded emails about the cake. I told her it was ok for her to buy a cake; we’re used to bringing our own safe cake to birthday parties for our kids. She emailed me today that she decided to make the cake and that it would be nut-free. When I responded how much we appreciated that, she wrote back:  “My conversation with Ari last year, a few days prior to his 5th birthday party, is forever engrained in my mind.  It just about broke my heart when he said all he wished for was to not have his nut allergy and to just eat the same stuff as everyone else.  So this is my little gift to him since I can’t make his wish come true.  Such a sweet kid.”

It brings tears to my eyes reading it now, as it did earlier today. I want to make Ari’s wish come true, too, and so I will push, and call, and harangue whomever I need to, in order to get them treated.