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6 yr old w/involuntary muscle movements/jerks/twitches, Paroxysmal Dyskinesias? please help!

Hi! 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,

My 9 year old suffered with these movements as well last year beginning in March.  They started off by only minimal movements that were not apparent.  Within weeks they attacked him 20-30 times a day.  I was moved by my pediatrician to a neurologist who told me my son need PROZAC and totally neglected to look at my documented record of these movements.  According to the 20minute EEG he was negative of seizures. I followed by a psychologist who didn't recognize the episode and then a psychiatrist who dx him with  Sydenham Chorea.  1 week later my son had a GRAND MAL seizure and was in the hospital for 6 days.

I recommend you video tape your son.  That was most helpful when I showed the neurologist at the hospital. After the 4 day video EEG was completed it turned out my son is an epileptic with most of his activity at night.  The 20 minute EEG to this day is normal.  My husband's uncle was an epileptic as well. 

I think back to when my son was 3 and the teacher complained he had memorization issues.  During his education he couldn't read/comprehend as well.  In 2006 he suffered from severe depression that lasted 3 months and lost 15lbs.  The pediatrician dx him with the "blues".   Finally last year the moods swings followed the involuntary movements. 

 

Good luck and stay focused.  It took us close to 2  years before he finally was diagnosed.

 

 

 

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Thank you both. I am so glad I posted here. I figured someone, somewhere must have similar story.

Should I call my regular pediatrician and go back into my son's history to see when he had strep? I've read about this condition brought on by the strepp. virus.

 Interesting - my son's 20 minute "in office" asleep eeg was negative. We will have results from the 48 hour videotapes one on Monday we think. The 48 hour one was also "on" while he slept both nights, with video of his face. He has also had very mild times (2 episodes) riding in the car where he has difficulty getting words out - almost stuttering but close to slurred speech too. It is odd. Both times happened when he was quite tired, riding home mid-afternoon from an activity.

 I wish I could post the video of him somewhere for you all to see?! We have a good 20 minutes of video clips of these movements. To be more specific...this is what it looks like:

 Example: walking to the bus at the bus stop. Walking normal and then this odd gait "attacks him". He goes up on his toes, arms/hands stiffen, feet cross while walking, wave of motion through arms, shoulders, hands...slight grimace in face - it looks like a sudden "attack" of M.S. or cerebral palsy....then it stops and he continues walking.

 Example 2: playing - he could be kneeling or standing, playing with airplanes...he "flies one" and "lands it" on table, steps back, and BAM - up on toes, writhing movements again, body going all over the place. He re-groups, continues playing.

 The movements happen in "clusters". When we did the Digitrace (48 hour) EEG, there would be 10-15 minute periods where we hit the "episode" button 8-9 times!

High stimulus areas seem to exacerbate it - Chuck E Cheese, his body goes wild looking at the games (!?!) - as though some time of visual stimuli is setting it off. Few years ago, things like fountains in Disney World - it was really bad. But now, it happens when he is simply walking to the car?! It has gone way beyond just "exciting" events triggering it. And the movements are worse :( Yet at his birthday party (tae kwon do class) we didn't see him do it ONCE.

I am so worried about him. He is a very emotional, sensitive child also and is very self-conscious now about the movements. After a "bad" movement, he'll say, "Mom, I don't feel good." He has never had the endurance of other kids - always the first to say "I'm tired"...and motor skills starting in infancy were all delayed quite a bit - walked at 17 months, crawled at 13 months....gross motor skills had to be "taught"...as in, "put your hand here, now move your leg here...". Normal movements were never just spontaneous for him. He started sensory motor therapy 2 years ago and when he was evaluated at almost age 4, he still had the palmar grasp when he crawled (turned under fingers)....was very delayed, and said to have the gait of an 18 month old. But he has caught up and is normal now/age appropriate - just not quite as "smooth" as other kids or as quick.

We just had regular bloodwork (CBC) and allergy to foods tested - all was normal and fine (soy, egg, dairy, casein, wheat, etc).

I have had several in the med. field tell me they feel it's more "chemical". Would love any more thoughts or stories...maybe I'll try to post video to youtube for a day or two and then delete it off so I can share these movements? Thank you all for your input.

 

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

The movements you describe are exactly the same as what my son experienced.  The episodes would hit him at any time and even during his sleep he's wake up with these movements.

Like your son, my son's bloodwork was tested for the strepp virus.  Even after he was dx with epilepsy I still took him to be analyzed by an infectious disease doctor.  Everything pretty much boiled down to the seizure discorder.  It was amazing to me that these movements and his altered moods would be in fact epilepsy. 

I think that you should go back to your son's medical history as well as recall any unmet mildstones or abornormalcies in academics.  If one neurologist doesn't dx properly keep searching and don't give up.

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Thank you June3....amazing that it was seizures.

Did your son's strep test come back negative? We haven't tested for strep yet, but I know he has had it in the last few years. We moved to this state 2 years ago so I may need to go back to our original ped. out of state for older records.

 Gosh Monday cannot come soon enough to find out results of the 48 hour EEG. I can't help but think it HAS to show something? If not, we're stumped....and we'll be quite frustrated.

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Hi Tpup,  His blood work came back with elevated antibodies.  Although my pediatrican did not agree with the dx of sydham chorea the psych md gave,  he did prescribe a 10 day course of antibiotics. 

I courious to know why is it taking so long to get the results of the 48hr EEG.  Our neurologist read the results during the course of 4 days every 12 hours and tracked it concurrently. 

What state do you live in?  I'm in Northern NJ.  Perhaps off line I can share with you the practice/hospital I recommend highly. 

 

 

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Hi - we live in northern VA, just outside of D.C....our doctor likes to "hunker down" and take a whole weekend to review the EEG. So we will have results this Monday. He is reviewing everything this weekend. I believe the EEG will certainly tell a good story - exactly what his brain is doing during these movements. Although if everything comes back negative, I'm stumped and we'll see which direction the neuro. wants to go. I will post as soon as I know.

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

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!

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

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,

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,

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

Check out Gilles de la Tourette Symdrome

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

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.