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Old 01-02-2013, 02:38 PM
earmom earmom is offline
Junior Member
 
Join Date: Jan 2013
Posts: 6
10 yr Member
earmom earmom is offline
Junior Member
 
Join Date: Jan 2013
Posts: 6
10 yr Member
Default palatal myoclonus

Quote:
Originally Posted by KJohnson View Post
My son has been diagnosed with palatal myoclonus. We are looking for someone to administer botox. We live in Ontario Canada - do you get botox injections? Who does this?
My son was diagnosed with Palatal Myoclonus in 2010. We have tried numerous drugs, ayruveda, acupuncture and now most recently surgical Botox. Our second attempt at the Botox, administered only on one side of his palate to reduce side effects, has stopped the clicks in one ear, but now he has very painful pops in that ear. I did read about someone else who had the same effects after Botox. He also still has pain regardless of the lack of clicking as well as vibrations in his throat. This was not the perfect solution although I have read that it has helped others. Based on my research there are only 2 pediatric ENTs who have performed Botox for this purpose. One is at Children's Hospital of Philadelphia and one at the Children's Hospital of Boston. Please contact me personally by email if you still need the names of these doctors. I do not have permission to post them on this site. I will say that this disorder has been debilitating and my son has missed most of this year of school. He lives in chronic pain from this disorder. I have promised him that I will NOT give up until we find a solution.
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