4 yr old hands twist, stiffen and flap when excited - involuntary muscle movemen

[shelbydog]

Hi! We have a very bright, communicative, normal boy turning 4 next month. When he is very excited or stimulated (like when he sees an airplane or if someone cheers and claps for him when he does something neat), his arms and hands twist and stiffen involuntarily. If we touch him, hold his hand or talk to him he stops (so I don't think it is seizure activity). This does not happen randomly. Only when he is very stimulated or excited - things that could trigger it are airplane flying by (he loves planes), speeding car,machinery like a printing press operating. Other than this he is normal. He did have a gross motor delay and articulation speech delay but received therapy -by age 3 "graduated" from both. He still gets some fine motor OT for writing skills. His gross motor delay was at 13 months and he needed help with crawling, walking, cruising - strengthening and motor planming. His muscle tone has always been excellent. He is not autistic. It doesn't affect school activities. It's not "random" The movements almost look "palsy" like. One doc (on the gen. med. board here) felt he would outgrow this - that his brain isn't fully developed to quite "organize" his movements when he is excited. On a recent trip to Disney, it was ALOT due to all the fountains, rides. Sometimes the movements cause him to lose his balance....he'll start moving his feet some and get kind of off kilter. We are concerned and have a consult set with his reg. ped in May. Any thoughts? I've read about stereotypy, tics. It seems worse when he is very tired. Other than this is is normal. Help!

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis over the internet unfortunately as this site is purely educational

The symptoms you describe can be seen in a disorder called paroxysmal kinesiogenic dystonia - this describes brief dystonic movements (twisting restless writhing movements) that are very stimulus sensitive such as movement. The underlying nature is probably genetic (parents need not be affected), and usually follows a benign course, although movements can occur up to 100s per day. Treatment is available once the diagnosis is established and is usually one of the anti-epileptic medications (although this is not epilepsy). The diagnosis should be made by a pediatric neurologist or a pediatric movement disorder specialist and you should endeavour to see one.

Another disorder with stimulus induced movements is hyperekplexia, a form of myoclonus (rapid quick jerks). Seizure have been known to occur in response to stimuli, and are usually in the form of repetitive jerks of a body part.

Again a correct diagnosis is key, and should be made by an experienced person.

Good luck

[shelbydog]

I should add that our concern is that we do not see other kids doing this? Some kids have started to stare or move away from him when it happens since his arms/hands look a bit out of control and it looks "odd". And by "not random" I mean it doesn't just happen anytime. For example, he could be coloring, eating, watching TV, or chatting with us or playing with friends. It won't happen, and doesn't happen unless something really stimulates him. So for example if he's watching TV he could be fine for 1/2 hour, but if a commercial comes on with a jet fighter or huge fountain spouting, it happens. Most people say, "Oh look how animated he gets when he is excited!" But the stiffening and "palsy" like look of it concerns us and the fact that it is so involuntary. Thanks.

[who_is_this]

If there is any way to videotape the movements before your appt, that might be very helpful.

[shelbydog]

Yes, we plan on doing that. It's pretty easy to "stage" since we know what excites him. We noticed yesterday it didn't seem as much - he was well rested and in a very good mood. But over the weekend - we took a long car ride home, missed a nap, etc and it was more marked. Are there neurologists on this board who will post a comment or thought? Thanks!

[who_is_this]

It takes a few days for an answer.

[shelbydog]

I wanted to add that the movements are not "stims". He does not do this as self-stimulation, nor does he do it when he is upset, crying, etc. Several people have mentioned autism to me (those who do not know nor have met my son) and he is not autistic nor does he have Aspergers. We were at the park today and he played beautifully with a new friend...had a great time for over 2 hours, but when his friend would come down the slide very fast and Evan was waiting at the bottom, he would squeal in excitement and do these movements. He also kind of "dances on" his toes when he does it - sort of steps, but I want to emphasize that he is not autistic. He plays appropriately, is social, engaging, etc. So he's not doing this as self-soothing or as a "stim". Thanks - looking forward to the neurologist post.

[sallyjo]

I'm not a doctor but my son had/has the same situation.  We had an EEG done and it was normal, but he did the same thing with his hands when he was excited. When he was little, different things brought it on - trains, playing with his friends, etc. The pediatrician said he should grow out of it, but he never did. He's nineteen now and has figured out various ways to disguise the motions, but when he watches an exciting game on tv, I know he's "doing it" (because I'm his mom)

So I can't give you an answer to your questions but only a peek into the future.  My son just finished his freshman year at college. He went to his HS prom and lives a pretty normal life. I suppose his close friends may "know" about this, but it doesn't seem to have affected his life.

[MRJ]

Hi,
My 15yo daughter has done this since she was able to sit up by herself.  Numerous doctors do not know what it is.  I have been told she has ADHD, bet that was the solution because they did not know.  When you find out please post.

[fourthechildren]

I hear you when you say it is autism so are you saying that the professional have ruled this disorder out? And im very curious is this behavior something that he always did ? or how long ago did it start?  I wish you luck in finding out the answer.

[lddbusy]

Did you find out anything yet? Who told you it wasnt autism and what did they do to find that out? I was a preschool teacher years ago and there was a little boy in my class that did these same things and the parents just sort of let it go and thought he'll eventually stop but it didnt and the doctors said he does have autism. I know that it is not ADHD no Im not a doctor but thats what my son has and its not like that .Let me know if you find out anything praying for you

[charley1986]

Hi,
My best friends son has this same disorder.  He has the whole tiptoe stuff going on and flaps his hands - constantly moving - sometimes when watching TV, sit still for a while but then sitting on his knees, begins to jump up and down and hops all over the room.  He also had a stutter problem which has almost gone away - he's been in speech therapy for a while.  Also, I guess some therapist told her when these things happen, to make him aware of it and ask him to try help control it.  Sometimes that works pretty well - he is not on meds that I am aware of - and he is one of the sweetest kids I know.  I may be a little partial - I love him so much! ;) Talking to him and helping him to realize what's going on has helped some - but he is almost 8 now and it has improved considerably in the last several years.  Also, think I remember reading that in a study, these children were very intelligent.  Know that I didn't give any info that could help - guess I just wanted you to know that you are not alone. Peace, charley1986

[NAOMISARA]

I WAS RELIEVED TO READ MY 4 YEAR OLD SON WAS NOT THE ONLY CHILD WITH THIS PROBLEM. SINCE HE WAS 1 AND A HALF HE FLAPS HIS ARMS AND STANDS ON HIS TIPPY TOES WHEN HE IS EXCITED. AT LEAST 3X TIMES A DAY HE SKIPS SIDEWAYS FROM ONE END OF THE HOUSE TO THE OTHER. THIS USUALLY HAPPENS WHEN WE ARE WAITING TO HAVE SOMETHING TO EAT, GETTING READY TO LEAVE, OR WHEN HE IS WAITING FOR US TO HAVE PLAY TIME. I DID LOOK INTO HAVING HIM SEEN FOR AUTISM BUT HIS PRIMARY DOC SAID HE IS NOT AUTISTIC BECAUSE HE CARRIES ON IN ADULT CONVERSATIONS AND IS VERY SOCIAL...HE IS VERY SMART AND LOVES STAR WARS-VERY IMAGINATIVE!! IM THINKING ABOUT GOING BACK TO THE AUTISM CLINIC BUT THE SYMPTOMS ONLINE FOR THAT AND ASPERGERS DOESNT REFER TO HIM...(EXCEPT REPETITIVE BEHAVIOR WHICH IS ONLY THE FLAPPING AND JUMPING AROUND.) IF ANYONE COMES UP WITH ANYTHING SOON PLEASE EMAIL ME AND I WILL CHECK THE POSTS ALSO. ***@****  THANK YOU!!!

[goldenscissors]

I don't know anything about this but i saw a program on tourettes syndrome.Do you think  it could be a very mild form of this.

[mindy66]

Hello,

I have a 5 yr old nephew that I becoming increasingly concerned about.
He has always walked on his toes. If I am not mistaken he walks on them 100% of the time.
Another area of concern (because is seems to be abnormal) is that when he watches TV, he does it standing up most of the time and is super focused on the show but jumps/hops up and down the entire time. He also does this when he is excited when telling you something.
In general, he is also very "ADD" and obsessive in personality. He's a sweetheart and a real lover, but these things just seem wrong somehow.
Does anyone here know what these things might mean??

Thanks in advance for any input or comments you might have.

Mindy

[mgenkin]

It is a relief to hear that you are not alone. My son is 23 months old and stiffening, arm flapping behavior has been hapenning since he was 9 months or so. Also hapenes only when he is excited, and only as a reaction to specific stimuli: objects spinning, water running, waiting for a milk to be warmed up, etc. We also went through 'Is it Autism?' phase, and luckily for us it was ruled out by a psycologist -- and apart from a mild language delay, he is a very normal, socially interactive kid... But I am very concerned about hand flapping exactly for the reasons outlined in this post already -- social acceptance would be hard. Also, I am concerned that such a neurological behavior could point at something more dangerous bound to cause problems later in life. We will have our 2 year old appointment in a month, and I will ask for a nerological referral -- so stay tuned...

[kynend2u]

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[allrmine]

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