Hi everyone,

Well we went yesterday for testing for diabetes...a stress test and a bunch of other blood tests. What I am upset about is my visit with our pediatrician, who I had trusted, but who I also knew had little knowledge of CAH. We went on a day that we had a regularly scheduled Depot-Lupron injection appointment, but I had scheduled extra time for a consult.  Chelsea was suffering from a sore mouth on the day of the appointment, so the first thing I had her do was look at that. Well, Chels had a mouthful of thrush. Great. I went on to explain what had been going on with her as far as her dizzy spells, paleness, weakness and fatigue. The pediatrician agreed she needed to be tested (Chelsea is prone to diabetes, having an Aunt on my side with it and an Uncle on her dad’s side with it), and that the thrush may be related to diabetes. She told me that it was also possible that the thrush was due to the Cortef...hmmm, hadn’t heard that one before at the dose Chelsea is on (5mg 3X per day)...I  have heard of it at higher doses, but this concerns me. So OK...we did the testing and are now waiting for the results. Yet another thing upsetting me is that when Chelsea was about 18 months old I was very concerned about her gross motor skills...she was terribly pigeon toed...especially with her left leg.  Back then they sent us to a pediatric physical therapist who did excersizes with her three times a week for about 5 months and then said that she was fine, that we should enroll her in martial arts or dance to strengthen her legs, but she was fine. They never said to watch it, and the topic was never brought up again...She did seem to improve and I let my guard down. As the years went on she remained pigeon toed, but it didn’t seem as bad. Last year I noticed it seemed to be worse,  that she was now turning way in with her left foot. So I brought it up at the visit, and the pediatrician said "Did I ever assess this before?"...Um YEAH....and NOW she’s telling me that Chelsea has pretty severe tibial torsion of her left leg, her ankles have something else I can’t pronounce or hope to spell that causes them to have way too much play, and she may have some other condition that I don’t remember the name of that affects her from the hips down in BOTH legs.... We now have an appointment with a pediatric orthopedic surgeon to address this issue.

I’m telling you all of this because I am feeling totally overwhelmed. Do I just have really bad doctors, or is there really supposed to be this much pressure on us as parents to be constantly assessing our children for physical problems the medical field "overlooks"?  Chelsea would never have been diagnosed with CAH if I hadn’t put my foot down, insisting something was wrong, and now it’s the same with diabetes and this leg condition. I am feeling very frustrated and scared. I don’t know if I’m up to the task of monitoring her like a doctor. Please help with any advice.