To Laura K
8/22/01 3:36 PM

Hi Laura,

I am very interested in your response to Nicole re: her diabetes post. I din't want to break into her thread so I thought I would post a separate message to you.  My son Jack seems to have the same reaction to hydrocortisone. I can immediately tell when we increase his dose because his appetite skyrockets and he puts on a lot of weight. (His sleep is also dramatically affected). He also doesn't seem to "come back to normal" with slight decreases in his dose.

For many months he was oversuppressed and we gradually and repeatedly reduced his dose. We had to get  to almost a  third of what it was at its highest point before we started to see him come out of oversuppression. Now he seems to be headed the other direction. His last two blood levels have shown undersuppression and we have increased twice without his numbers coming down. He is only three so we don't have too many years of experience with him and CAH. I am beginning to wonder if he needs a more dramatic reduction to halt oversuppression. I am worried since we slowly reduced his dose and had to go so low to finally see improvement, then he was too low, we'll end up on this cycle of  down, down, down, then up, up , up. 

 I am very curious about Claire's blood levels. Have you found her levels typically correct with a small dose change? Has she vacillated between over and under suppression? Has she had times when she was able to stay on a dose with minimal changes for a long period of time?

I hope you don't mind me asking you so many questions. I just saw so many similarities between her and Jack and I can't figure his treatment out.

 

Chris D
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