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Hi Natalie, are you feeling any better? I can't believe that your daughter has shingles! I've never heard of it in someone so young. I agree with your pediatrician. I've heard other people talk about not treating except for stress dosing in times of illness, and it seems reasonable to me. This is interesting to me, in that shingles shows up as a rash (is that what your daughter has?), and my daughter suffers from chronic hives. I know that there are androgen receptors in the skin (shows up as acne, for example), so I still believe that my daughter's hives are related to her hormonal imbalance. It's also interesting because when my daughter's hives get bad (usually when she's stressed or fatigued like yours), the treatment is...prednisone. Maybe your daughter's levels should be checked while she has the shingles to see what's happening.
I'm glad that Rachel is hanging in there. Did she also need a lot of sleep as a child? My daughter still struggles with fatigue daily, also. It is her main complaint. I still think that it is related to the CAH, or at least hormonal imbalance. Do they ever check Rachel's cortisol level? Does she take the Dex at night? Maybe she'd do better on a different steroid?
I sent all my daughter's records to NIH 2 weeks ago, but haven't heard anything back from them yet. I don't think they will want her in their study because she doesn't have a diagnosis and because she has the additional problem of the hives and medications for that, but they said they would look at her records. I've just learned of a new endo nearby, so I am going to take my daughter to him. Maybe since he is freshly trained, he will at least know about CAH. Two older endos that my daughter has seen did not think she had a problem!
