Hi Everyone,
My 6 year old son was diagnosed with CAH last August. I was never told what kind. We are going for a check-up on April 20th. I am going to get copies of his tests then. I am just now finding out what this all needs. The endo just put him on Cortef 3x day, told us to get a medic alert bracelet and gave us a crisis kit for home.
Erin at CARES told us we should have one at his school also. So, we just recently got one for the school and had a big meeting with the principal, teacher, nurse. So now they know what to do in the case of an emergency. She also said it sounds like he has the NCAH since he wasn't diagnosed until 6 years old.
Anyway, my son also has Growth Hormone Deficiency. He was diagnosed with that in June and CAH in August. My question is, is there anyone out there that has a child with both of these conditions? or do you know of anyone. It sounds like it is rare to have both. My son has been on growth hormone replacement for 10 months and still is not growing well. We are so concerned. I am wondering if the CAH has something to do with it also. But from what I have read- some children with CAH go on growth hormone because they have trouble growing. It seems like he is getting a double whammy in the growth department.
My son also still seems to be tired a lot. The endo has run a lot of tests, but can't find anything else. We are so worried about him.
Any thoughts/suggestions would be great!
We are going to do the Natural History study at the NIH in Maryland. We will have genetic counseling there.
Thanks a lot- this can be so confusing.
