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Sunday, May 30, 2010

congenital adrenal hyperplasia

it has been a while since i have updated on M's condition. he has been diagnosed with a condition called congenital adrenal hyperplasia. the first test done was an xray on his wrist to find out his bone age. the hope would be to see 5 1/2 (his age). our dr. told us that if it showed 7 + we would have something to worry about. it came back at 12 1/2. next we headed to primary children's hospital for blood work--poor kid--he has been back a few times since and will continue to have level checks every couple months. short story of his diagnosis--his adrenal gland is not functioning properly. it is not making some life sustaining enzymes (cortisol for one). so, his body makes an excess of male hormones. he is now on several pills a day--2 in the morning, 1 after school, and 5 at night. when he gets sick we have to triple his meds. and then when he gets really sick (vomiting, broken bone, etc.) we give him an injection of hydrocortisone). he had the stomach flu this past week and i had to give my first shot. it was not fun for either of us!! we will find out in a couple of weeks if the meds are working well enough to stop the puberty or if he will have to have an implant put in his arm. we are praying that he won't! the dr. told us that the condition is not curable, but it is treatable. we feel so blessed to live where we do where we have such wonderful doctors and hospitals. after hearing m's medical history the dr. was shocked that he is still alive. 4 surgeries (oxygen levels dropping to the 30's), tumor in his ear, broken collar bone, etc.--he said that he shouldn't be alive. thank heaven for the priesthood. this little boy is a trooper. i know that he is here for a reason.

9 comments:

Kelly said...

You should contact the CARES Foundation, www.caresfoundation.org . They provide support and education for families affected by CAH. You may want to find out more about CAH. If you child is on 8 pills per day for CAH as your blog suggests, that would be WAY TOO much and can cause all kinds of serious long term problems. The Cortef (hydrocortisone) comes in 5 mg pills. An average dose for a 5 year old would be maybe 1-3 pills per day or between 5 and 15 mgs/day. Average is probably 7.5 mgs/day. I have a daughter with CAH too who was diagnosed at 7. You can email me if you want. Kelly

Anonymous said...

which kelly are you? i would love to chat!

di said...

sorry, that was from me (the author of this blog!

di said...

kelly, because of his levels he is on 3 cortefs a day, but is on other meds as well. i have done quite a bit of research, as has my family. thank you.

Kelly said...

Hi--I am Kelly Leight from NJ. Email me when ever and you want--yes, 3 sounds good, but make sure his 17 ohp does not go below about 200 ng/dl, at least not for too long. ideal is 200-1000 ng/dl--not normal range for non-cah kids.
Kelly

di said...

kelly, will you please send me your email address???

Kelly said...

kellyleight (at) comcast (dot) net

Gordon said...

So sorry about all you are going through with m. What a challenge!
Hang in there!
Love,
Sis Lewis

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