Upper body weakness?

I had a meeting with Kyle's occupational therapist and she expressed concern about Kyle having weakness in his upper body. Could this be NF related? And regardless if it is or isnt can I do anything about it besides exercise?

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I'm not sure about that but my daughter and I both have upper body weakness. I work out at the gym on a very regular basis so I do have some strength but I am not as strong as others. I'm quite fit just not very strong. My daughter has a similar problem. She has recently joined Contours to help her gain some strength and level of fitness. When Jess was little she had OT, Speech, and PT, all to help her get to where she needed to be as she was behind in many of those things.
Exercise will always help. Not sure about pills or diet though.

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This is my take on it. Poor muscle tone (hypotonia), most often relatively mild, isn't all that uncommon in NF children. In some cases it may also accompany pectus excavatum which is a soft sign of NF and is also frequently seen in connective tissue disorders. For some patients it may also accompany other features of NF Noonan's syndrome. There are lots of articles on various vitamins, and more specifically minerals, as treatment for decreased muscle tone. Nothing that is NF specific and nothing that I can advocate but you could ask your doctor about the value of a mineral supplement.

Cindy

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My 13-month old son has hypotonia (low muscle tone). At this point, he has just learned to sit up unassisted and can't yet crawl and isn't even close to being able to pull up to stand or start walking. I have noticed, by my own observations, that he does seem to be weaker in his upper body. Hypotonia, while it can accompany other conditions or present itself on its own, can also accompany NF1.

You are already on the right track since your son is meeting with an OT. My son is all set up for Early Intervention and physical therapy.

Best wishes!

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The OT said the same my son has less upper body strength

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I have upper body weakness, my arms hurt me so bad sometimes that it brings tears to my eyes,,it could be something pusing on a nerve or something

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i have the same problem. weaknessin my arms. who shall i go see about this?

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I get it as well at times, I also get it in my right leg, I have to use a cane at times to get around, but everytime I go see the Doctor about it he does his basic tests and says everythings fine..

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I know in last few months I have developed weekness in arms and legs.I cant even fold a t-shirt without dropping it cause I get so week.My leggs go to jelly and throw me alot.Since this is new could something be wrong?

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