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Is this Dystonia??????

My son is 10.5 yrs old and has been taking valproic acid to treat grand mal seizures for the past 2.5-3 years. In Jan. this year the dosage was increased because he had two attacks after being stable for two years. Since then he hasn't had a seizure. About a month and a half ago he had a fall while playing with friends. He says he fell on his coccyx. About 10 days later we noticed a change in his speech - it has become nasal with a certain amount of difficulty in speaking - especially when agitated or uptight. Together with this he has lost complete control over his right arm. The arm and hand are not paralysed but he lacks coordination and his hand is mostly held in a fist position close to his chest. He uses his left hand to "work" his right and cannot perform any voluntary action with his right hand/arm. He cannot voluntarily raise his arm above his shoulder. CT scan + MRI scan,spect all came back clear and the neurologist has started him on carbamazepine and baclofen in addition to the depalept. He says that we are dealing with dystonia. The medication was added in the last 10 days - no major change has been noticed. Important to note that during sleep the hand is completely relaxed and sometimes during waking hours too when the child is watching TV. As soon as he wants to use his hand\arm voluntarily it seems to go into spasm and he cannot open it. By the way he has a suspected Sturge Weber (suspected because no brain lesion found).
I would appreciate any input on this topic and ask too if the "dystonia" may be secondary to the valproic acid?
Thanks
LM
ISRAE
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Avatar universal
I am not aware of valproic acid causing dystonia, and I can find no reports in the literature. However, there are some reports of it helping with the dystonia. What you are describing may be dystonia, but without evaluating your son, I can not be sure. A second opinion with another pediatric neurologist at an academic center is reasonable. They can review the imaging and confirm the absense of abnormalities and recommend other tests to have checked. Has a MRI of the cervical spine been performed, this may also be helpful to exclude structural lesions in this area. Lastly, blood work to exclude causes for dystonia should be evaluated. You should discuss this with either your pediatrician or neurologist, and proceed from there. Good luck.
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Avatar universal
I'm trying to understand for what reason my queston was ignored by the neurologist?????
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