Multiple doctors and specialists for a toddler--but no one seems to be overseeing his treatment as a whole. Who is supposed to be my main source of information when he's having immediate, severe health issues?
My toddler has a primary care physician, and that is who we see for regular illnesses, concerns, etc. The usual. Because of my son's severe GERD, the pediatrician referred us to a gastroenterologist.
Through the GI doc we discovered (via an upper endoscopy) that my son has EE
. Well, that sucks, but at least we know WHY he's in so much pain when he eats. Great.
Meds are dispersed while we visit an allergist. Allergist says no apparent allergies show with the prick testing, so we need to stick with the GI doc.
We've been treating his GI issues for about 18 months now, knowing he must have SOME allergy, but not knowing what it is.
This weekend, his face blew up, eyes swelled shut, welts all over his body. Go to the ER, get a shot of Epi and some benedryl, it's an allergy, but we don't know why. Next day, I forced the pediatrician to do CAP-RAST testing and CBC. They said that it was unnecessary, but I insisted that we find out his IgE levels. Tests came back today and he's got a severe reaction to something (IgE through the roof) but again he tested negative to all the allergens.
So I know I have to take this further, because I can't have my toddlers throat closing up and just assuming there's nothing I can do. But who is the person to make the goal/treatment plan? Do I make a list of what I want and take it to the pedi? After all, that's not the doc treating the chronic issues. Do I talk to the GI doc? The allergist said he was fine. Who, in this mess of doctors, is supposed to take the reigns and decide the course of treatment? I feel like I'm really going to just explode on one of these doctors because I'm pushed off to another doc every time I ask a question.
For the record, I really do like these doctors and think they've treated us very well. I don't always trust or use western medicine, and the fact that I'm spending so much time with doctors is a sign that something is *really* wrong with my son.
So how do I handle this so the treatment is coordinated on all levels? Who oversees everything and decides the next step? How do I communicate to the doctors that one person needs to be my son's "go to" doc and care for the whole person?