Hi everyone. I have a couple of questions about what type of blood tests should be being done on my son. he is 7 months old, and a salt waster. We got the diagnosis about 1.5 months ago, and were started on cortisol and florinef. He went into the hospital at 6 weeks of age due to severe dehydration. We were told that possibly even 30 min later and we could have lost him. Anyway, they werent sure what was wrong, and started him on sodium bicarbonate, sodium chloride, lasix (has since been stopped) and Kayexalate to get rid of excess potassium. They finally did the 17 hydroxy(???) test and came to the diagnosis of CAH. What I’m wondering is: We were told that once starting his new meds, cortisol and florinef, he would be weaned off the others. This has been attempted a couple of times, but with bad results (sodium drops and potassium goes way up). They are not sure why this is happening...  I wonder if his cortisol and/or florinef need to be altered? If these are too high or too low, would that account for his body still not processing potassium correctly? What test are done to check this? All the doctors are doing is electrolytes once a week to make sure that his sodium and potassium are ok. Shouldnt there be more????

Maybe I’m just paranoid! =o)

Any suggestions would be great. Our doctor is great, but has a strong accent and is kind of hard to understand sometimes. Also kind of hard to talk to, but if I knew some actual specific things to ask for that would work out better.

Thanks!