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Can any drugs help my nephew with JHD?

January 5, 2015

Huntington's Disease Youth Organization

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Can any drugs help my nephew with JHD?

Q. I have a 10 year old nephew that has HD, he is in the Hospital, intubated, he is feeling a lot of pain and the doctors are giving him medication to control de pain and the convulsions. Are there any drugs that can help him?


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A. Dear Viviane,

Thanks for your question. Your nephew has juvenile HD which can cause epileptic seizures, painful muscle stiffness from either spasticity or dystonia as well as all the symptoms of adult HD. There may be other causes of pain apart from muscle stiffness, but I can’t comment on these as I don’t know his case. If he is intubated he may also have severe weakness of either the swallowing or breathing muscles or both.

Epilepsy in juvenile onset HD is often very difficult to control even with modern anti-epilepsy drugs. However, there are some that are often effective. They include valproate, clonazepam and levetiracetam. There are others also.

Treatment of the pain depends on the cause of the pain. If the pain is due to muscle spasm, then clonazepam is effective in relieving muscle pain as well as controlling seizures. However, if there is another cause of pain then clonazepam will not be effective and he will need other treatment for pain.

I hope that this email is of use in what must be a very upsetting situation for the whole family as well as your nephew,