re: re: re: re: re: re: re: Blood Pressure and CAH
May. 14th, 2002   8:15pm
See my posts about plasma renin blood test. It is very important that the salt wasting CAH person get this blood test.  A baby under one year old is very difficult to retain salt (they drink so much milk/fluids and go to the bathroom so often) and the florinef is very important and salt supplements.  I would go to a doctor that specializes as a ped endo and knows what they are doing with CAH. Ask them how many patients with CAH are in their practice. How long have they been practicing. References - can the parents call if you give the doctor your phone number, etc.  Also the NIH (National Institute of Health) is doing studies with CAH. They might have an opening for you child to see an expert. They see over 60 patients and are experts in CAH. Some parents on the CAH have seen them.  I am taking my children there and it is wonderful to find a doctor that specialized in CAH and CAH research.  Let me know if you want their address and phone numbers.  The cortef and florinef levels (and supplemental salts) really need to be under tight control the first two years for proper growth.
Roberta
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