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Myoclonic Jerks / ?

Hello my daughter (13) was born having seizures. She has been diagnosed with refractory complex partial and generalized seizures. She has also been diagnosed with seizures during sleep. I noticed recently when she is sleeping she would have these movements that looks like twitching and shrugging her shoulder/s. Sometimes her shoulders and arms will jump up inches off her body. Sometimes it would happen 1 or 2 times in a row sometimes up to 10-15 times rhythmically. Sometimes it's both arms at the same time and sometimes it's 1. Sometimes it's the fingers, head or the face (eyes, mouth, cheeks) and sometimes it starts with the fingers then goes to the arm then head/face and other arm. I have even seen her stomach twitch. Sometimes they arouse her to make her turn over. Then it's like they start all over again. My daughter also has them anywhere from 1 sec. to a few seconds to 1 minute to a couple of minutes apart. All the way to a few hours apart. I notice it more in the morning before she wakes up after the nights sleep although she also does it if she takes a nap. I have been video taping her while she sleeps and her pedi neuro said she had Myoclonic jerks, but didn't feel like they were seizures. She said the jerks I showed her are every second and that wasn't fast enough to be a seizure. How fast should they be to be considered a seizure? I showed her on a 3" screen. So I don't think she saw it that good. I am confused as to why this is happening she wakes up with real bad headaches. She has also had since birth at different times where her tongue quivers for a while then it stops. The pedi neuro didn’t know what to think of it. Now I have seen and also taped where her arm does this weird movement. I wasn’t sure how to describe it, but my little boy said her arm moves like jello. So it shakes in small increments sideways not like a muscle twitch that jumps vertically. I showed the pedi neuro and she wasn’t sure why or what was happening, but isn’t concerned. Should I be?  She is on 5 different seizure med.  Carbatrol XR 1600mg a day, Lamictal 800mg a day just dropped to 400mg a day, Phenobarb 194.4 mg at bed, Topamax 400mg a day, and just added Depakote XR 500mg a day. We had just completed another Neropsych eval. And it shows that she has declined mentally we are not sure if it is because of medicine or the seizures. We are changing her meds around and will be taking her off some and do another Neuropsych eval in the fall. Any thoughts would be greatly appreciated. Thank you.
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509215 tn?1363535823
Hello there.I just read your post. My 6.5 yr old takes myoclonic/drop attacks.He also experiences the tick jerky things constantly,which are known as abscent seizures.He also takes grand-mal seizures.All three of these are known as half of the 6 types of documented seizures written about.I think that maybe you should ask for a second opinion.My son also takes the night time seizures every so often.Usually,when he takes the night time seizures, they are the grand-mal.He has also fallen out of bed,off of the couch,etc.Just this morning,he was playing with some toys on the floor and took a drop attack which made him fold over and hit his head on the floor.I would go with your gut instinct.I had to ask for a second opinion.And I'm really glad that I did,because our new doctor actually seems like he cares.The other doctor got to the point that he wasn't sharing information about our sons' condition.We found out information through the paediatrician.If you want to talk, I'll be around.
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Avatar universal
Thank you for your response. She was started on Topamax in the middle of Feb. and slowly increased.  We dropped the Lamictal to 400mg a day begining of May. Then May 19th she started the Depakote. Discontinued the Carbatrol XR 10th June. Sorry I wrote this before the discontinuation of the Carbatrol I should have re-read it. All the rest of the meds are correct. She has had the myoclonic jerks before the new meds were added and also the ones that were discontinued. We are still working on getting her meds adjusted. EEG done 3/25/08 showed 9 sec generalized run of 1-2 Hz spike-wave discharges clinical episodes were seen and had electrical epileptiform correlate with arousel and eye opening after event. Thank you again for your thoughts.
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484098 tn?1259527532
It wouldn't surprise me to hear that those are symptoms of OVER medication!!!  
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