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re: re: re: re: re: re: my child with cah Jun. 20th, 2008 5:04pm
Congrats on your beautiful little girl! My daughter is now 16 months old and has swcah but does not have ambiguous genitalia so I can't help on that aspect. All I can suggest there is to really research the surgeon to make sure you pick the best one you can (hopefully one who has done these kinds of surgeries before with great success). Perhaps you could post a question about surgeon's in your state on this site and see if anyone has any suggestions. I too was very scared about being able to tell when my daughter's condition was CAH related or just normal sickness that I didn't have to worry about (she is my first child as well and I had never heard of the disorder until she was diagnosed at 3 1/2 weeks in the ER). My daughter doesn't seem to exhibit the classic signs of CAH problems so all the doctors we saw before she was diagnosed seemed to think there was a mix up in the blood work and she was fine. My doctors always tell me to look for signs of dehydration (lack of drooling or saliva, no tears, very dry skin) and I always bring her to the Pediatrician when she has a stomach flu (because vomiting and diarrhea are also signs of CAH related problems). My doctor is wonderful and whenever we aren't sure he orders blood tests and has the answers rushed so he can call me with the results to let me know if her medication needs to be adjusted or not. If you really feel that something CAH might be wrong with your daughter don't be afraid to demand a blood test to check. I think it's safer than over medicating because I've been told that doing that too often (probably way too often) can lower their immune system. My daughter does seem to get stomach bugs and colds more common than most children and they seem to last a bit longer. The only times I've had to up her medications were once when she had over a 103 fever and another time when she was vomiting for over a week. I know its so scary but just so you know my daughter is developing wonderfully and I believe your daughter will too. It's scary now but you'll be able to read her before you know it. I can't help too much because my daughter is only a toddler but if you need anything else my email is lil_muffra@yahoo.com. It really helps me to talk to other mom's about this stuff. Best of luck and God bless!
