My son is a teenager with Congenital Adrenal Hyperplasia. I would love to find anyone dealing with this or similar growth disorders. He was diagnosed at six years old and has been on a therapeutic dose of steroids since. We struggle with keeping his weight down in a healthy range no matter his level of activity and diet restrictions. Recently he gained over 30lbs in less than two months with a medicine change. We see a pediatric endocrinologist and are searching for a good nutrionist. Please help! I would welcome any advice!! Thanks.
Thank you so much for the advice and great ideas! It feels good just to have my concerns validated. I am going to check into all of the suggestions. I also found a mother to network with through this request. Thank you all and God bless.
I don't know anything about CAH but your story was heart wrenching for me & as I read over it a personal trainer popped into my mind. Do you think that might help the situation some? Share with him/her your concerns & maybe give them some info on it & they may be able to work out something for you to help him. You've been blessed to have a blended family & it sounds like it's working, good luck to you & God Bless!
You may have already visited this site, but www.congenitaladrenalhyperplasia.org has a link on the left side that connects you to support groups, families and blogs. I haven't looked at it extensively, but it may help.
Best wishes! C.
I don't know anything about that condition but regarding the nutrition, go to Children's Mercy. My sister-in-law was a pediatric dietician there before she moved to California. The staff is trained in specific health issues for kids and their needs.
Yikes, on steroids since age 6y! Whew! We dealt with this, but we refused all the steriods. Our kid had 3 operations, of course before the operations steroids were administered. All operations were finished before age 3y and that was quite a time ago!!! I'm telling you, something is really not right about your situation. First, please see a pediatric chiropractor. You've got to get a balanced look at your son's overall anatomy minus the drugs! My gut tells me that you will learn alot from the chiropractic overview. Now, if your son's condition merits this extreme medical care, the chiropractor will state this in his/her findings. A wise woman once told me, "Become an expert of your child." I did this, literally. Our kids are just fine, and without all the steroids!
