Discussions By Condition: Muscle conditions

4 y/old with muscle weakness

Posted In: Muscle conditions 1 Replies
  • Posted By: MelissaP
  • August 27, 2008
  • 08:30 PM

I haven't been able to get a diagnosis for my 4 yr old son who 8 months ago began to exhibit extensive hand weakness. After beginning physical therapy (twice a week every week since) we have identified that he has almost no muscle strength in his thumbs and he has significant shoulder, back, and abdominal/trunk weakness. He hit all of his developmental milestones on time or early (he's my fourth), he had a quick, uncomplicated, vaginal birth w/out any known trauma or cord event. He had extensive blood and urine tests as well as a brain and spine MRI. Everything has come back completely normal. Please help. Doing my own research, I came across Desmin storage myopathy...is this a viable diagnosis? Would it have been detected in his bloodwork? They did everything. It took 6 weeks for some of it to come back. His neurologist said "he's just wired this way", but I'm not satisfied with that. He wasn't like this his first 3 years. He's doing great, but as a mom, I've got to know that I'm doing all I should/can for him. Thanks is advance for your help and advice. :)
MelissaP

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  • Have him checked out by an ear nose and throat MD. ASAP My 10 year old daughter has been in competitive Taekwondo for almost 2 years. About 1 year ago she began to get progressively weaker in her legs. We went from MD to MD until I took her to my MD. She took one look at my daughter and told me to get her to an ENT. Apparently her tonsils began to grow in some bizzarre fashion and was cutting off her O2 flow. Her oxygen stats were about 89-91%. One we had her tonsils and adnoids out, we had immediate improvement. She has now regained almost all of the strength she had. I never thought to look b/c I figured that if there was a problem they would catch it. THe MD said that if they are not having alot of infections they don't tend to look at them. The Surgeon told me that he airway was the size of a drinking straw. I hope this helps. T
    msnova74 20 Replies
    • August 28, 2008
    • 02:43 PM
    • 0
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