Vicky
02-02-2006, 02:35 PM
My 11 year old son was diagnosed about 2 years ago with a very rare neuromuscular disorder.
To make a long story short we meet with some friends at the part last Friday. He was playing on the monkey bars, I was helping him making sure that he didn't fall. When he felt his muscles in his back pull. Now for most kids a couple of days and they would be better, but with him its is more like a couple of weeks. Every time you touch his back he screams in pain, because it feels like needles and pens being poked into his back.
Please pray for him and for us as we go through this time. When he was diagnosed he had hurt his arm and had the same symptoms. We saw several specialist and they thought it was just a pinched nerve he had 3 nerve blocks and nothing helped. Finally we saw a neuromuscular specialist and after a muscle biopsy we found out what was causing his pain. The nerves in the muscles are all messed up they shout pain when no pain is there, making him have those needle and pin feelings. There is really nothing that they can do. If he gets hurt, the pain is worse when he gets cold and eases up when its warm. Thank goodness it is not cold here.
He also was told that he could never play any contact sports because of the threat of getting hurt. They also said that if he tore, or severely stained a muscle that he would hurt for up to 6 months.
This is so much for an 11 year old to handle he has to be extremly careful when playing. He is unable to do somethings that boys his age love to do. :(
To make a long story short we meet with some friends at the part last Friday. He was playing on the monkey bars, I was helping him making sure that he didn't fall. When he felt his muscles in his back pull. Now for most kids a couple of days and they would be better, but with him its is more like a couple of weeks. Every time you touch his back he screams in pain, because it feels like needles and pens being poked into his back.
Please pray for him and for us as we go through this time. When he was diagnosed he had hurt his arm and had the same symptoms. We saw several specialist and they thought it was just a pinched nerve he had 3 nerve blocks and nothing helped. Finally we saw a neuromuscular specialist and after a muscle biopsy we found out what was causing his pain. The nerves in the muscles are all messed up they shout pain when no pain is there, making him have those needle and pin feelings. There is really nothing that they can do. If he gets hurt, the pain is worse when he gets cold and eases up when its warm. Thank goodness it is not cold here.
He also was told that he could never play any contact sports because of the threat of getting hurt. They also said that if he tore, or severely stained a muscle that he would hurt for up to 6 months.
This is so much for an 11 year old to handle he has to be extremly careful when playing. He is unable to do somethings that boys his age love to do. :(