Replies to '06/04 Too Big, Too Young'

I am a mother of three children and all are affected with diabetes and there is NO diabetes in our family history. My husband and I have been tested for the gene for this and so have our children. This is an unusual situation. I am telling you this because our daughter became ill 2 years ago. She was 16 years old at the time and a very active and beautiful young lady. She started gaining weight and had always been very concious about what she ate and was an extremely healthy eater... tons of veges and fruit and ate mostly fish and chicken.Within 1 month she gained over 30 lbs. Our own doctors thought she was either lying about what she ate or was eating a lot of processed foods.  Neither was true. I have always been very careful what I feed my kids due to their diabetes and we all eat healthy... I forced this on our youngest, because he was so picky and loved sweets.  She eventually became very ill and was recently diagnosed with cushings disease. She just had surgery for this on Oct. 4th this year.  Cushings disease is an overproduction of cortisol from the adrenal glands which will cause uncontrolled weight gain. She had 3 tumors in her pituitary gland that would overproduce a hormone called ACTH which causes the overproduction of cortisol by the adrenals. She gained over 70 lbs. in 5 months. One tumor was found by our primary docs and they sent us on to Childrens Hospital in Philly for help. This is a rare disease and not usually found in children, but I think that is because they are misdiagnosed so often. The testing for this disease is very  difficult and long and can be very hard to prove. Levels can fluctuate and that can make it difficult. Two docs at Childrens hospital basically turned her away telling her she needed to eat less and get more exercise... at this point she had become very ill and could not even walk some days. One of the docs even went as far as to say I was doing this to her.  Most doctors do not know how to test for this disease. It is not done by one blood test or one urine test and not one test is fullproof. I flew her  3000 miles to California to a research doctor to get help and that doc saved her life. He sent us to a neurosurgeon to remove the tumors. the tumors can be very tiny and therefore docs think they don't cause any problems, but...they can be deadly. She would have died without his help and no one seemed to care they just thought she was over eating. You know your child like I know mine. If you can't find any reason as far as what your child is eating then keep pushing for help. You may run into a brick wall... probably many ... as I did, but you need to push and push hard.I hope this helps you a little and good luck.