Discussions By Condition: Medical Stories

6 year old with life time of symptoms, no answers

Posted In: Medical Stories 1 Replies
  • Posted By: jacluc
  • June 1, 2008
  • 04:46 PM

Hi, my 6 year old son was born 10 pounds 8 ounces. He came home from the hospital already drinking about 4 ounces per bottles. At 5 weeks he was hospitalized for viral meningitis. By the time he was 5 months, he was still only drinking between 3-4 ounces per bottle with no interest in baby food. The doc said, "if he isn't complaining, why are you?" At 6 months I brought up to the doc that he could not bare weight on his legs. He told me to give him time, "after all, my wife didn't walk until she was 24 months". By 10 months we went to another ped because things weren't getting better. After seeing a million specialists, he was said to have hypotonia (poor muscle tone) but they couldn't find a reason why. Maybe the meningitis, but viral doesn't normally cause lasting problems. He received physical therapy, speech therapy, and feeding therapy (his mouth was affected due to poor muscle tone). Over the past several years we saw a new problem. This sounds crazy but it is true. Between the months of Sept.-January, every year, he gains tremendous weight even though his diet does not change. I mean between 10-14 pounds. He goes through night sweats and muscle pains throughout this time. He cannot sleep and is up all night. He is currently 71 pounds and 6 years old. We went to and endocrinologist who said that he is just unlucky and can't eat like everyone else. And if I can keep is BMI where it is right now, until he is 18, then he will be a normal weight. This does not sound like good advise to me. Also, he does not overeat at all. He eats less than the other children in our family. Also, he has developed a dark patch on his upper left arm. It started just under the shoulder and was small. Now it has spread downward to just past the elbow and appears to be heading over the shoulder now too. There is also a small patch starting on the upper right arm too (same spot that the left started with). I feel as though I sound crazy but doesn't this sound hormonal (like he is going through menopause)? Also, during the months of gaining and night sweats he tends to get a swollen look to his face that goes away and comes back. Does anyone have any ideas? Here is what he has already been tested for: Williams Syndrome, Pradar Willie Syndrome, Thyroid disease (TSH levels are 3.77), and his cortisol levels were checked. Any ideas would be appreciated.

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  • It might be time to start looking at genetic problems and getting some genetic testing done.Has there been anyone in either family with any genetic problems? Any relatives who died young or were "different"? Even if just in stories. Find a pediatric specialists - usually teaching hospitals, trauma I level hospitals or medical schools have very specialized physicians in practice nearby or part of and get an appointment. It def. doesn't sound normal.
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