Re: Scoliosis/midline/tremor/SSI

[Guest guest]

Tamara,

My daughter, Chelsea, has severe hypotonia, and can only sit with support. She sits with a very rounded back and a pot belly that hangs over her pelvis. Her ped says this is due to her low tone and the fact she does not bear weight on her legs. She does not have scoliosis, fortunatly. Her muscle stability does fluctuate thruout the day and from day to day, but not as pronounced as your sons.

Chelsea has severe ataxia (loss of coordination), which makes it very difficult for her to hold her arms at midline. She also has a lot of difficulty lifting her arms against gravity. Her left side is much worse from seizure activity. This is something I have been working on with her as well, with minimal progress, but at least it's progress! I have found that play-dough is great for midline play, as I can smush her hands together in it. She also enjoys the tactile stimulation.

Chelsea does have a definate tremor, hers is caused from CNS dysfuntion, so it is coming from the brain and not the muscle. It does seem more pronounced at sometimes than others. Sometimes she will look like a bobble head doll and others, it is only most evident in her arms, which will wobble back and forth when she lifts them. This is also a part of her ataxia.

I also see a lot of up and down with her progress. Unfortunatly, she gets sick very easy and then will be down and out for some period of time. So it is usually a push and pull just to keep her maintaining what she has.

On the SSI issue, is Jeoy is school at all? If so, a school social worker may be of some help. What I have basically been told, is to keep applying, that it may take several tries before you are approved. I need to take my own advice, though=)

HTH

e, Chelsea's mom(nonspecific mito)