Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Hi, my name is , I am a single mom of 2 wonderful boys, Troy who is 18 yrs. old and lives on his own, and Jake who is 13 yrs. old and has some medical problems. I will tell you a little about him. He was dx at 2 days old with Hirschsprungs disease. He had 2/3 of his large intestines removed and colostomy at 2 days old. He had his pullthrough surgery at 11 months. Did great until age 8 started in and out of the OR monthly for disempactions. He got his cecostomy at age 12 and has only been back in the OR 2 times in the last 1 1/2 yrs. old. 7 months ago he was dx with Eosinophilic Esphagitis/Gastritis, and ended up with a NG tube for feeds for 5 months. It also causes him to be on a very strict diet, he has a lot of food and enviormental allergies which he gets weekly shots for. In Dec. he saw a new GI and he feels he has a tethered cord, due to the sever pain he has in his lower back that radiates down his legs. He also urinates a lot, and his constipation issues continues to get worse. He also has a knott on the base of his neck. We are currently waiting for an approval for an MRI. I'm hoping we hear about it this week. I really would like to find out what is causing his pain. I do know some about this condition due to my nephew, who just turned 4 had his cord dethered last year, he also had a fatty filum. I'm sorry for the long post. Any advise or suggestions is much apprectiated. , www.caringbridge.org/visit/hdandjake Quote Link to comment Share on other sites More sharing options...
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