Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Hi. My son, Jack (age 4), started having fevers and mouth sores over a year ago. It was all rather mild at first, but kept getting worse and worse. He began getting sores so bad that his face would swell, he couldn't eat, drink, or talk. We had to syringe pediasure into his mouth for the entire length of the episode. They came every four weeks at first, but after using prednisone to heal the sores they began coming every 2 weeks or so. I was close to having a major breakdown at that point. Jack has had just about every test run for auto-immune disorders and allergies. He has had the sores biopsied and had blood drawn twice a week for 2 months. The doctors at St. Louis Children's hospital could find nothing wrong except high levels of eosinophils (a white blood cell related to allergies and parasites that most of us don't even have or need.) The G.I. doctor performed an upper endoscopy and colonoscopy and found a build up of this cell in his esophagus, but could not find a relation between that and the fevers/sores. Well, Jack quit having episodes for 11 weeks and I was hopeful that he had " outgrown " all of this. But, they came back Dec. 6 and the nightmare began again. Throughout all of this I had spent endless hours on the internet trying to find out what was wrong with my son and I happened to stumble upon a medical research site about . We're seeing the immunologist again on Dec. 16 and I'm going to mention this to him. It would be nice to finally know what could be wrong with Jack and what we could do about it. So, here's what goes on with Jack. Does this sound familiar to anyone? *Jack's fevers usually only go to 103. (Is that high enough to be considered for this disorder?) *His lymph node under right jaw becomes enlarged but not " super " enlarged. *Mouth ulcers are unbearable for him. He lays in a semi-conscience state the entire time he has sores and we have to force him to drink the pediasure. He can't even suck on a straw. His face and lips swell and tylenol or motrin doesn't even make a dent in the pain. Tylenol with codeine doesn't help either. He whimpers with pain and at times yells out. When he's not sleeping, he's crying. *He has complained a few times about his throat but I assumed he had sores back there. Plus the sores hurt so bad I don't think pain anywhere else would really register. *His cycles are not as regular as other cases that I've read about, though they had been at first. Should I keep pushing the doctors to look into this. Has anyone had success with removing tonsils and adnoids? Thanks for listening and any input would be helpful. I've been blown off for a year by every doctor but one and made to feel like a crazy, paranoid mother. Meanwhile I've had to start taking medication for anxiety just to keep it togther during his attacks. I've prayed and prayed for answers, maybe some of you can help. Christie ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
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