Can anyone shed some light on this condition as my sons physio seems to think my son is showing signs of Dystonia. Is there someone here with cp and Dystonic muscles??
I went to a conference on CP six months ago and got the impression that Dystonia is distinctly different from Dystonic CP. My understanding is that Dystonia is a disease where different muscles become spastic as time passes and that Dystonic CP shows spasticity differently than "regular" CP. I would press the doctor for more information and why he/she thinks this is the case.
Dystonia can be difficult because the changing locations of spasticity mean that a rhysotomy that fixes things when your son is 7 may no longer be effective when your son is 11 and the spasticity has moved to a different muscle nerve.
But, again, I'm just a mom and this is only my understanding, I hope you can get more information!
Well he was diagnosed with spastic diplegia, I'm not sure if he does have dystonic cp, they are going to monitor him over the next few months to see how he is going. I was hoping he might be a candidate for SDR but if he does have this dystonic component then that will be a no for the SDR...so I have been told.
My friend has Dystonia and she takes a medication that is for like Parkinsons or CP. She is totally fine!!!!!!! She goes to a Neurologist and she is completely fine!!!! Just wanted to share that with you....
My daughter has Dopa Responsive Dystonia. DRD is a rare disorder, but I wanted to point out that some CP related dystonia is treatable with medication. Anyone who has CP or a child with CP, who is displaying any dystonia like movements should talk to your doctor about doing a trial of Sinemet.
Our world changed (for the better ) when we finally did the trial.
) when we finally did the trial.
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