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Susan P's Story...

We have been working to find what the diagnosis is with my son, Sam (now 12 years old). We atarted when he was in Kindergarten with headaches and hip pain. We have been to several doctors before we found one that would listen to the things that were going on. So far he has been diagnosed with focal seizures (takes two different types of meds for, 9 pills a day) and Perthes (ball of hips dead which we went to Shriner's Hospital in Lexington, Ky for 18 months) seven years ago, bone density tests show signs of Osteoporosis forming, bone age tests show that his bones are 18 months older than his chronological age, Degenerative narrowing in spine, central sleep apnea (brain forgets to tell him to breath), anxiety, reflux (which he takes two different meds for and still no control), insulin resistance, and the latest is that his iron levels are very low.

We have a wonderful doctor that is trying his best to get to the bottom of things, but so far we have not found a specialist that will listen. We took him to Vanderbilt Children's Hospital and met with a Pediatric Endo there that could not get past his weight. She said the dreaded word, "FAT", three times in one sentence. Any mother out there who has been where I am knows that that is not the thing to do. She also told me that I was part of the problem and that he was not telling all that he was eating. Mind you, we had all the positive test results for Cushing's and also the positive result of the Adrenal Tumor, but she refused to acknowledge it.

You will never convince me that she looked at the type of insurance we had and decided that we were not worthy. My children are on state insurance due to the face that we are dairy farmers and can not afford the 1,000 a month to have family coverage. I was very disappointed because of the rave reviews that Vanderbilt was given for their Pediatric Hospital.

My son is 12 years old now and has never complained - just wants to know why no one will listen to him and hear him. He takes 21 pills a day and when we contacted NIH about the possibility of him being able to come to them, they wanted us to take him off his meds "cold turkey", which you can not do with seizure meds, and then repeat the tests.

We are both at our wits there anyone out there that can help us with ideas or suggestions? His Pediatrician is awesome and is very open to me researching and looking on internet, talking to people who may have different ideas, and just plain being involved. If anyone can help me, please respond.

Thanks for all your help and thanks for your prayers also.

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