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6 yr old w/involuntary muscle movements/jerks/twitches, Paroxysmal Dyskinesias? please help!
Wed, 05/14/2008 - 10:29Hi! Does anyone have experience with a child having involuntary muscle movements in hands, feet, arms and legs? It's like a wave of motion/stiffness. We just met with a neuro, had an MRI which was normal except for a smaller hippocampus than normal? Regular, asleep EEG was normal. But we are waiting for the Digitrace/video 48 hour EEG results which should be more telling. In the meantime I thought I'd post.
When he was a toddler, he often twirled his hands when excited. He also had a significant gross motor delay, speech delay, some stuttering on and off. My mother is epileptic (grand mal seizures) I am fine and no other family history. My son went through EI phys. therapy, speech and some sensory motor therapies - "graduated" from all, normal 6 year old otherwise, doing very well in school. But has these "spasms" while playing, walking - I don't count but I'd say close to 50 per day if not more. He does not do it when he sleeps. We were working with one doctor (sensory motor integration specialist) who felt this was some form of stimming but my son is not autistic, no longer delayed and he doesn't do it to self-soothe. He cannot control when the movements start, but we can "interrupt" or stop the movements by touching him, talking to him, etc. It is VERY frustrating. During the movements his hands twist, bend inward at wrist, stiffen - it looks like someone with MS perhaps...arms and legs move all over, his feet cross if he is standing and he has been stumbling. It's like he can't control his foot placement. Our neuro. is investigating possibly seizures, but I have also read about "chorea" and Paroxysmal Dyskinesias?? All of it frightens me. I am worried about him. I would say the movements come and go....there are times we don't notice them and then he has really bad days?! Interestingly when he is really "focused" (like at school) - it rarely happens.
I would love to hear about other experiences with this. I would think if it were seizures we wouldn't be able to "interrupt" the movements, however if they are very short ones, maybe they would be ending anyway around the time we try to stop them??
Would love any feedback! Thanks :)
Comments
Re: 6 yr old w/involuntary muscle movements/jerks/twitches,
Submitted by LMIDGLEY on Thu, 2009-03-05 - 16:04
Hi,
I read your posting with great interest. My son 2 half also does exactly what your son does. He too can be snapped out of it with something more interesting and does it more excessively when excited. I too wondered whether these movements were voluntary (isms) or not. When he is concentrating on something his movements seem really purposeful. Have you had any further investigations. If so I would be really interested if you could let me know. I would love to see the vidoes to compare.
Lisa
Hi,
I read your posting with great interest. My son 2 half also does exactly what your son does. He too can be snapped out of it with something more interesting and does it more excessively when excited. I too wondered whether these movements were voluntary (isms) or not. When he is concentrating on something his movements seem really purposeful. Have you had any further investigations. If so I would be really interested if you could let me know. I would love to see the vidoes to compare.
Lisa
Re: 6 yr old w/involuntary muscle movements/jerks/twitches,
Submitted by wyboemail on Wed, 2008-05-14 - 13:30
My son was six or seven when he first started having the jerks and twitches. We took him to pediatrician and he refered us to the neuro. They did a eeg and that was normal so they diagnosed him with benign tic disorder. Said he would outgrow it and no need for medication unless the movements became violent and he was hurting himself. They would come and go. More if he was tired or anxious. He then had a grand mal seizure at age 8. EEG came back with a slight abnormality. Diagnosed with benign rolandic epilepsy. Keppra 750 mg's a day. Tics went a way when he was put on the meds for the seizures. Now in the last two months he has started having these tics again but in his sleep. Only the first hour after falling a sleep. He has had nine seizures since March of 2007. I would like to talk with you more about this. email is wyboemail@yahoo.com
My son was six or seven when he first started having the jerks and twitches. We took him to pediatrician and he refered us to the neuro. They did a eeg and that was normal so they diagnosed him with benign tic disorder. Said he would outgrow it and no need for medication unless the movements became violent and he was hurting himself. They would come and go. More if he was tired or anxious. He then had a grand mal seizure at age 8. EEG came back with a slight abnormality. Diagnosed with benign rolandic epilepsy. Keppra 750 mg's a day. Tics went a way when he was put on the meds for the seizures. Now in the last two months he has started having these tics again but in his sleep. Only the first hour after falling a sleep. He has had nine seizures since March of 2007. I would like to talk with you more about this. email is wyboemail@yahoo.com
Re: 6 yr old w/involuntary muscle movements/jerks/twitches,
Submitted by tpup on Mon, 2008-05-19 - 13:55
Well it's not seizures. Right now the neuro. feels it is "stereotypies"....basically dystonia, or a "cousin" to tics. He gave us the name of a behavioural specialist to try to find ways my son can "live with this"....but we are also pursuing a ped. endocrinologist for a full bio chemical workup, as I am not satisfied with a diagnosis of "stereotypies". We may pursue this via Georgetown Univ. or Children's in DC.
We are meeting with the neuro this week to discuss options, but as of now, he is not recommending any medicine. I am frustrated. Would love any thoughts or experiences with this. Thanks!
Well it's not seizures. Right now the neuro. feels it is "stereotypies"....basically dystonia, or a "cousin" to tics. He gave us the name of a behavioural specialist to try to find ways my son can "live with this"....but we are also pursuing a ped. endocrinologist for a full bio chemical workup, as I am not satisfied with a diagnosis of "stereotypies". We may pursue this via Georgetown Univ. or Children's in DC.
We are meeting with the neuro this week to discuss options, but as of now, he is not recommending any medicine. I am frustrated. Would love any thoughts or experiences with this. Thanks!