I had a few questions I wanted to ask about CAH, since I’m pretty new to all of this, and have only seen my son’s Endo one time ( next appt. is February 1st).
My first question is have any of you adults here with CAH, or your children with it, had seizures related to CAH? My son’s Endo said that they arent uncommon (maybe he meant if they were in adrenal crisis?) He mentioned to me that I was lucky that he hadn’t had any seizures in the beginning when he was really sick, because many of his CAH patients have had them.
Also, I wanted to see if any of you knew how long the med’s have to be in a person’s system for them to do any good. My baby spits up alot, and I wasn’t sure if he spits up 20 minutes after taking his medicine, for example, if that is long enough to do any good, or does he need a repeat dose?
Also, in general how much shorter do people with CAH turn out to be? My son’s Endo said that since I am very short (4’11 1/2) and my husband isnt very tall, that he would like to see him get as much height as possible. Kinda freaked me out...he never really said how tall he was guessing he would be.
Anyway, I just wanted to see if anyone had some answers for me. I’ll run all these things by his Endo, but sometimes it’s better to talk to people who are experiencing these things first hand. Thanks :)