My son is 16. He was diagnosed at 2 days old. Thankfully he was premature so the experts were checking for everything.
Matthew has done very well over the last 16 years. Of course we had crisis and lots of blood tests but as they get older, it gets more managable.
Although CAH is a disease, we always refer to it as a hormone defie-cency.
Matthew is on Hydrocortef (1o mg AM, 5 afternoon, 5 evening) and .1mg florinef in morning.
When Matt became old enough to swallow a pill I thought Heaven had fallen into my lap. It was a major event in our house. I didn't have to give shots anymore.
When Matt was a baby, I didn't know I could put the salt in his bottles when I made them everyday. This was a big help. I added the salt every night when I made bottles for the next day.
Matthew is a catcher for his high school baseball team. He does well in school and is very nice looking. We have never made him feel that he couldn't do anything he wanted to.
He has been responsible for his medicine since he was 12. He organizes his own pills in a weekly pill box and has disciplined himself to take them. He never misses medicine.
Parents- Don't let your children with CAH miss their meds! Matt has probably only missed 2 or 3 doses in his 16 years. He has done beautifully. He is seen by his Endocrinologist 2 times a year and does not have to have blood drawn. We collect a 24 urine sample. This is very helpful to the Dr's. He does have some bone aging but very little.
Because he hasn't missed meds, his height is very good. He will probably be about 5'10" pr 5'11". His father is 5'9" and I am 5'8". This is great growth. His acne is well controlled. He has very little.
Trust me, you will be able to tell when they are getting sick before they will feel it. Trust your instincts. Keep emergency doses with you and get a medic alert bracelet or necklace for your child.
Kristy
