Still searching for help for my daughter with this also. She is not a candidate for botox. Is on Artane but does not seem to be helping. Waiting for a reply to a referral we got.
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Thank you for addressing the questions. Yes she has had several video eeg’s and we were always told that they were seizures – not all of the movements but majority. Thank you again. How does one get an appointment and do you do telephone appointments for questions? You are touching on a lot of things – time/length of seizures, can they cause more damage, how long do you let back to back seizures go on even though they are only 10-15 secs long but not even a minute apart. Oh so many questions. So hard…
conversations with doctors go no where anymore.
Have you used Charlottes Web oil? I hear a lot of good about it for some. Others (like my daughter) would probably need the whole indica plant oil. Living in a state that does not allow it is very hard.
My daughter has seizures daily. She is on a lot of medicine and has tried just about all medicines. She has a VNS. Now the docs say they are not all seizures there are some movements that might be dystonia movements. I don’t understand. Looking for some guidance.