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re: re: re: Are illnesses harder to get over with NCAH? Aug. 8th, 2007 2:51pm
We actually think my son is just a carrier although we are currently looking for a rare second mutation. Your daughter is more severely affected, but that could mean that she might also be more likely to go into early puberty or have her bone age advance. I was told the same thing at the beginning, but then also told that a late-onset person has never died from adrenal crisis. My son has been on a low dose of cortef - 5 mg or 7.5 mg a day for over 4 years. He was just away for a week playing baseball and although I told him to take his pills, I don't think he did regularly. So even missing pills and playing baseball in close to 100 degree weather he didn't get sick. I hope a hundred people don't jump on me, but the risks of your daughter going into crisis because you treat her, when she's survived this long with no medication are very slim. No one has told us to take an epipen with us.
