re: 8yr old son w/ non classical CAH
Jun. 19th, 2003   11:50am

Wow Jacki! When I read your msg a rush came over me.  My son, Trenton, was diagnosed at age 7 with CAH.  I too noticed all of the symptoms you are describing.  Finally we were referred to an Endo when his pediatrician saw he had pubic hair.  I remember being at the doctors office and listening so carefully only after a while to hear blah, blah, blah.  I didn’t have a clue what he was telling me as I had never heard of such a disease.  My family was so concerned about what the doctor said, yet when I tried to explain, everyone got these blank looks on their face.  To this day whenever I talk about it to people I get the impression they have no idea what I’m talking about and what I went through for probably 5 years.  Trenton is now 14-1/2 years old and was on his medicine from age 7 to age 12.  When he was diagnosed at age 7 his bone age was already reading 11 or 11-1/2 yrs.  At 12 when he was taken off his medicine it only read 13-1/2.  The doctor said he was close enough to puberty and that nature would take it’s course.  I totally trusted our Endo because I had heard he was one of the best in the state.  Trenton put on 90 lbs in those 4-1/2 years he was on cortef.  I kept telling the doctor he doesn’t eat like I see his friends eat, I won’t let him.  The doctor would never admit his mood swings or weight gain had anything to do with his medicine.  Since Trenton has been off the medicine I know he feels better, but we went right into the 13-14 age moodiness.  We are still dealing with weight issues, thanks to the great boost we got while on cortef.  What I stress to you is, if you are unsure about anything at all, such as weight gain, moodiness, dosage, etc.  QUESTION IT.  I feel so bad now that I just went along with everything the doctor said because I was so uninformed.  I did not have the internet at that time so I knew nothing of this great msg board. I only found this by accident in March and it has been the therapy I needed all those years.   Aside from the side effects of cortef Trenton’s height prediction is now around 5’9".  We feel really great about that because at the time of his diagnosis it was 5’2" due to the damage the disease had already done.  Sorry if I rambled on, but when I read your msg I just felt like I had so much to say. 

Trentonsmom
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