You can probably tell by now that we’ve had more than our fair share of “not so good” doctors. (Can you tell I’m trying really hard to be nice?) At this point, I knew that Ped #3 just wasn’t working. While he was nice, every time we went to see him, he didn’t remember what was going on with the kids, and I would have to start at the beginning each time and try to spark his memory. It was getting old. Besides this, when he wasn’t there, we had to see one of the other doctors in the practice, and some of them I just couldn’t stand. (Like the one who insisted Silas was throwing tantrums just before he ended up in the hospital.)
GI #2 understands us better than most and has given me some really good referrals. One of the first was to an immunologist since Silas was having these high fevers at least once a month. I’ll call him Dr. I. I have to give him credit. He ran a lot of tests. He tested Silas for several of the periodic fever syndromes - including Hyper IgD and Familial Mediterranean Fever Syndrome. He redid allergy testing and confirmed that nothing was showing up. He did a renal ultrasound and took blood often. From our visits with Dr. I, we discovered that Silas has very low uric acid levels. Because of this, he tested for Disorders of Purine Metabolism, which came back normal. We also know that the markers for inflammation fluctuate often. However, Silas’ ANA panel (related to lupus and other autoimmune problems) was normal.
When I decided it was time to find a new (and hopefully final) pediatrician, I asked GI #2 for his opinion. So, in December 2009, I took his advice and moved both kids to Ped #4. It’s going well so far. She at least remembers who we are each time we come, and I believe we’ve finally found the place we need to be.
At some point, I started taking pictures if Silas’ reactions so the doctors could have some visuals. Here you can see one of the times his whole face was swollen.
Here are his eyes when they’re looking good.
Here are his eyes when they’re swollen (which is often).
Another good thing about Dr. I was that he got me looking into metabolic disorders again...