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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
Check out Gilles de la Tourette Symdrome
Submitted by Dennis McDonald on Thu, 2008-05-15 - 17:23
Dear tpup
My 13 yr old step daughter had very similar symptoms to those you describe when she was 8 or 9. She would be walking and have complete twitches. Arms & legs would go completely rigid. We consulted a few specialist before she was diagnosed with Gilles de la Tourette syndrome ( or simply Tourette syndrome) I suggest you read up on it and discuss it with your physician.
The popular misconception of Tourette syndrome is that those affected will scream loud verbal obsenities (as one of the characters in the Deuce Bigilow film) but that is extremely rare and usually exagerated by Hollywood for obvious reasons.
Again please read on the subject to learn more. i've included a link for your info.http://en.wikipedia.org/wiki/Gilles_de_la_Tourette_syndrome
Here is a brief description found on the web;
Definition Return to top
Gilles de la Tourette syndrome is a disorder of the nervous system that causes a person to make repeated and uncontrolled (involuntary) movements and sounds (vocalizations) called tics. The disorder is commonly called Tourette syndrome.
Causes Return to top
Tourette syndrome is named for Georges Gilles de la Tourette, who first described this disorder in 1885. There is strong evidence that Tourette syndrome is passed down through families, although the gene has not yet been found.
The syndrome may be linked to problems in certain areas of the brain, and the chemical substances (dopamine, serotonin, and norepinephrine) that help nerve cells talk to one another.
Tourette syndrome can be either severe or mild. About 10% of Americans have a mild form. Many people with very mild tics may not be aware of them and never seek medical help.
Tourette syndrome is four times as likely to occur in boys as in girls.
Symptoms Return to top
Most people first notice symptoms of Tourette syndrome during childhood, between ages 7 and 10.
The most common first symptom is a facial tic. Other tics may follow. A tic is a sudden, rapid, repeated movement or voice sound (vocalization). Tics can include:
- Arm thrusting
- Eye blinking
- Jumping
- Kicking
- Repeated throat clearing or sniffing
- Shoulder shrugging
By the way Chloe has been medicated and doing fine ever since with no side effects. She's doing great in school, sports and activities. I remember quite well how the involantary movements use to embarass her and she would even try holding her breath to prevent the twitching.
Hope this helps & good luck
Dennis
Dear tpup
My 13 yr old step daughter had very similar symptoms to those you describe when she was 8 or 9. She would be walking and have complete twitches. Arms & legs would go completely rigid. We consulted a few specialist before she was diagnosed with Gilles de la Tourette syndrome ( or simply Tourette syndrome) I suggest you read up on it and discuss it with your physician.
The popular misconception of Tourette syndrome is that those affected will scream loud verbal obsenities (as one of the characters in the Deuce Bigilow film) but that is extremely rare and usually exagerated by Hollywood for obvious reasons.
Again please read on the subject to learn more. i've included a link for your info.http://en.wikipedia.org/wiki/Gilles_de_la_Tourette_syndrome
Here is a brief description found on the web;
Definition Return to top
Gilles de la Tourette syndrome is a disorder of the nervous system that causes a person to make repeated and uncontrolled (involuntary) movements and sounds (vocalizations) called tics. The disorder is commonly called Tourette syndrome.
Causes Return to top
Tourette syndrome is named for Georges Gilles de la Tourette, who first described this disorder in 1885. There is strong evidence that Tourette syndrome is passed down through families, although the gene has not yet been found.
The syndrome may be linked to problems in certain areas of the brain, and the chemical substances (dopamine, serotonin, and norepinephrine) that help nerve cells talk to one another.
Tourette syndrome can be either severe or mild. About 10% of Americans have a mild form. Many people with very mild tics may not be aware of them and never seek medical help.
Tourette syndrome is four times as likely to occur in boys as in girls.
Symptoms Return to top
Most people first notice symptoms of Tourette syndrome during childhood, between ages 7 and 10.
The most common first symptom is a facial tic. Other tics may follow. A tic is a sudden, rapid, repeated movement or voice sound (vocalization). Tics can include:
- Arm thrusting
- Eye blinking
- Jumping
- Kicking
- Repeated throat clearing or sniffing
- Shoulder shrugging
By the way Chloe has been medicated and doing fine ever since with no side effects. She's doing great in school, sports and activities. I remember quite well how the involantary movements use to embarass her and she would even try holding her breath to prevent the twitching.
Hope this helps & good luck
Dennis
Re: Check out Gilles de la Tourette Symdrome
Submitted by uzma on Wed, 2008-09-10 - 13:03
Dear All
My 11 year old daughter has symptoms very similar to the second posting (Dennis). Her symptoms started with motion (wave like) in right leg, and now have started effecting arm, jaw/neck and back inthe same order. It has only happned when she is standing, however, yesterday it happened once when she was sitting. We took her to child neourologist before pediatrician and her MRI and eeg were clear. That doctor eprescriped her "orap". We got scared by side efefcts and took her to a pediatrician who is now doing bloodwork to rule out everyhting else.
Dennis, what medication did your child take? and did the tic go away completly after medication? is she still taking it?
Please let me know. I have been to too many scary sites for MS, MD even parkinson...........right now I think I am need of psyciatric help. I wish it was me instead of her.
Dear All
My 11 year old daughter has symptoms very similar to the second posting (Dennis). Her symptoms started with motion (wave like) in right leg, and now have started effecting arm, jaw/neck and back inthe same order. It has only happned when she is standing, however, yesterday it happened once when she was sitting. We took her to child neourologist before pediatrician and her MRI and eeg were clear. That doctor eprescriped her "orap". We got scared by side efefcts and took her to a pediatrician who is now doing bloodwork to rule out everyhting else.
Dennis, what medication did your child take? and did the tic go away completly after medication? is she still taking it?
Please let me know. I have been to too many scary sites for MS, MD even parkinson...........right now I think I am need of psyciatric help. I wish it was me instead of her.
Re: 6 yr old w/involuntary muscle movements/jerks/twitches,
Submitted by pschroed on Sat, 2008-08-23 - 11:32
My son, 6 yrs. old, has had seizures for 4 years. He has complex partial seizures orginating in the temporal and occiptal lobes. He also has these tics at night and has since the onset on his epilepsy. The doctor continues to tell me that these are not related to his seizures. The tics only occur in the first hour of sleep. All his seizures have occured during sleep, except for a few absence seizures. Any information you have would be helpful, thanks.
pschroed
My son, 6 yrs. old, has had seizures for 4 years. He has complex partial seizures orginating in the temporal and occiptal lobes. He also has these tics at night and has since the onset on his epilepsy. The doctor continues to tell me that these are not related to his seizures. The tics only occur in the first hour of sleep. All his seizures have occured during sleep, except for a few absence seizures. Any information you have would be helpful, thanks.
pschroed