Anyone Out There with a Child Diagnosed with CAH?

My son was diagnosed with CAH when he was just a baby. I also had no idea what it was or how we were going to deal with it. My son is now 7 and doing just fine. Yes, he wears a medical bracelet (they make lots of cute styles for kids) and takes medicine 3 times a day (he's been able to swallow pills since he was 2), and if he's sick and unable to keep his medicine down, then we have to give him an injection (fortunately that hasn't happened too much). He also has to go to see his endocrinologist and have his blood drawn every 4 months. That was really hard when he was little, but he's so used to it now, he doesn't even cry! I would highly recommend the doctors at Texas Children's Hospital. They are great! The hardest part of the whole thing now is remembering to give him his afternoon dose on the weekends (he normally takes it at school). I would also really recommend joining the CAH support group (called CARES). They can give you lots of good information about all the different types of CAH and how to treat it and the latest research findings. They put out a quarterly newsletter that is very good. We've had a local Houston Chapter that did one fundraiser a while back, but I don't think they are very active anymore. If you would like to talk about it more, please call me at home ###-###-#### (evenings). Don't worry, you may be a bit overwhelmed, but it eventually it will become part of your daily routine and you won't even think about it.

Hi A.,

I too didn't know what CAH was and looked it up. This website looked like it would be very helpful as well as the others listed. http://www.congenitaladrenalhyperplasia.org/
Hope this helps, and good luck to you and your family!

Google CAH support groups. Several are listed. I don't have experience with CAH, but I have a daughter with a chronic illness. Support groups and national organizations that provide support and education are invaluable.

My thoughts and prayers are with you and your family.

Honestly I had no idea what CAH was so I looked it up to see if there was anything I could tell you to help. I got lucky and found the following website which has a link for support groups. I really think that they would be a good starting place!

http://www.savebabies.org/diseasedescriptions/cah.php

It also discusses the differences between being born with this diagnoses and developing it later...generall I think you may find it a rather informative website on your daughter's condition.

Good Luck!

I'm part of a support group whose main focus is Cushing's disease but we have people with all sorts of related pituitary and adrenal conditions as members as well. You might find it helpful and there is a lot of good information available on the site. There are a few moms that are members for their children. http://www.cushings-help.com/ Theirs lots of info on the main site and any questions you have can be posted on the message board. Take care!

I am a licensed midwife in Texas and you can go on the states website and get alot of information. When you were given the results from who ever did your screen they should have given you a fact sheet with information. They also list support groups. Did you have further testing done to see if your daughter is just a carrier? Go to texasnewbornscreeningcah
Good Luck.
M.