Last post Mon, May 19 2008 1:07 PM by Daniel502. 4 replies.
My daughter has just seen a new doctor about her Dystonia. One of the options suggested was Tetrabenazine which is not yet FDA approved. If anyone has used this drug or knows anything about it, would you please give us some information? Thank you.
Hi, I'm Marlene, and this is my first day here at Disaboom. I am a Registered Nurse, and now retired on disability from a SCI. I read your post, and thought I would try to see what info was out there for you. I cannot be more specific on your particular question, as Dystonia is a symptom, and treatment would most likely depend on the underlying disease process, or severity of the symptoms, as well as age of your daughter. Here are a couple of links you might find helpful:
http://www.google.com/search?q=Tetrabenazine+&hl=en&rls=com.microsoft:en-us:IE-SearchBox&rlz=1I7ADBR&start=20&sa=N
http://www.mdvu.org/library/pediatric/treatments/tre_med_tetrabenazine.asp
http://hddrugworks.org/index.php?option=com_content&task=view&id=195
http://www.nature.com/ncpneuro/journal/v2/n10/full/ncpneuro0299.html
Mpumpky, how nice of you to find those links for her! Way to go.
Becky
Thank you for your help.
katesmum,
Welcome to the Disaboom community! I hope you find the support you are looking for
