Complex Motor Stereotypy

[Kel127]

I'm sure I will be alone with this one, since it doesn't seem to be a very common thing, and I haven't met anyone else who has heard of it.
Connor was recently diagnosed with Complex Motor Stereotypy. He has had a noticable tic since he was about 6 month old, but I didn't realize at the time that it was not normal. I thought it was just a reflex that babies had and he would grow out of it. He didn't it only got worse as he got older, and it became clear to be that his movements were involuntary. It happens most often when he is tired or excited, and is very fustrating for him. I found out that his tics are actually called stereotypies and it is something he will have his entire life . As he gets older he can go to therapy to try and learn to control it.
I just worry about how hard this will make life for him. I'm afriad he will be picked on, and that he won't be able to participate in sports or do the things he wants to do in life
He is a short clip of Connor's stereotypies.
https://youtu.be/4u6sKU7WJtA

 

[sun]

Hi and lots of hugs!

I don't know anyone with this, but I do know two young kiddos plus I have a friend with tourettes - is it similar?
I also worry about bullying, but I know that realistically my son won't go through life without dealing with it in some way. It is terrifying to me to let him loose in the world and not be able to protect him though! x

 

[zandksmom]

Hi there.

I just read your post and wanted to reach out to you. When our daughter was very young (about 5 months old), I saw hand movements that seemed to be uncontrollable. I was worried about it and told my husband that I thought it might be some sort of degenerative disease. Time went on and she developed just fine. However, when she's excited (or tired, or stressed, or bored) she will flap her hands and sometimes kick her feet. When she's just tired or stressed, she will sometimes lie down on the floor, cross her legs, and clutch her arms tightly around herself - she always called this "flutching."

For years we just chalked it up to one of those things kids just do. About a year ago, I started doing research online and figured out that it was complex primary motor stereotypy. At first, we were really flipped out about it. She was in preschool and we were concerned kids would pick on her (we noticed they'd sometimes stare when she'd flap). We spoke with our family doctor, who referred us to a specialist (but also said that she had no concerns about our daughter's development and didn't really see this as an issue). After doing more and more research, we decided not to call the specialist because so much of what we read said that drawing attention to the disorder can often lead to psychological or pschyosocial issues (basically, it would make her hyper-focused on it and that might perhaps progress into other issues as she tried to avoid the flapping, etc.)

Fast forward a year - we went through a somewhat stressful summer and were out of our element much of the time. Her stereotypy motions seemed to increase. She started kindergarten a couple of weeks back, which has further increased her stress as she's again out of her comfort zone. I've explained to her teacher and the school nurse about CPMS and have asked her teacher to just say her name or touch her on the shoulder when she notices her slipping into an episode. The teacher's said it's happened in class, but that she's been able to distract her back into the moment and other kids don't seem to notice. Nonetheless, since the frequency has increased, we decided to reach out to the specialist this morning to see if there is some behavioral therapy that may be able to help her.

I'd be glad to stay in touch with you on this. It sounds like we're going through the same thing and might be able to learn from shared experiences.

Know that you're not alone

 

[Happy_Mummy]

I just found this post on Google, and when I read it I registered on the forum just so that I could post this -

You are not alone! I have just this week found an awesome Facebook group for parents and carers of children with CMS!

You will have to look up Motor Stereotypy on Facebook as this stupid forum kicked me off for 10 minutes for trying to share the link with you!

I also thought we were alone - I couldn't find ANYTHING in Australia - this group has made me feel so much better...

This is our story as well:

My family is in Australia - Newcastle actually. My beautiful son is now 3 years old. According to every bit of information I can find - and believe me there has not been a lot, I have relied heavily on the JHM page - I am 110% sure that my darling boy has classic CMS.

He has been a clapper, and tucks his chin down into his chest whilst pursing his open mouth in a certain way since he was at least 6 months old. At first we thought his happy dance was just totally cute (we still do!), but at around 2 after fighting these inner niggleings that something wasn't right I began my research. Mainly I was worried that people were going to look at him and at one glance 'diagnose' him with autism - which he is far from having.

My little boy is my first of 2 children, his sister is 14 months younger and does not display the same behaviours as he does. He is quite advanced for some things for his age - he could sit unassisted at 16 weeks old, was walking at 9 months, can draw faces and heads with bodies (in a beautifully child-like way of course - but way more obviously than his peers scribble) but he is slower with his language skills.

At the start of July this year I took him to the paediatrition for his 3 year check armed with video on my phone and asked him for a diagnosis of proper-motor-stereotypies non-autistic. He agreed fully that Brody has stereotypies, but he was quite insistent that they were a product of frustration due to not being able to communicate properly. Though I knew that this was completely wrong - He has no frustrations at this stage with communication as I can understand him and he doesn't attend daycare or preschool yet, plus he breaks out with the hand clapping and face pulling when he is happy and excited! The joy of a new DVD in his hands or the excitment of building a high tower of blocks! This was a happy dance.. But still, I went along with his advice of speech therapy as I knew he could benefit from it anyway and there was a part of me that even though I didn't believe it - had hoped that the movements would relax as he progressed.
It was clearly evident though, and the therapist agreed with me, that the stereoptypies were not caused by frustration - more like elation. And often worse when he is tired.

xx

 

[TX_Mommy]

I ditto the other Moms.....My son showed signs at an early age as well (6 mos) where he would stretch out his legs/ curl his toes, tighten and curl his wrist, hold his breath and make an "O" shape with his mouth. As a baby we thought it was cute, as he got older we realized that something was not right.

We told our pediatrician who recommended a specialist.....We visited with the Neurologist and it was the most relaxing appointment I could have had as a Mom. I was fearful he would be teased, that his life would not be filled with the great joys as a normal child - I shared this with the Neurologist and he said this "Your child is normal and even advanced in development. Just because he has some unusual movements that does not mean he will not have a full life. Let me tell you this - I see many things daily that makes my heart sad - but CMS is not one of them. He can love, he can learn and he is happy. Don't let this bother you as a Mom, there is nothing that you did wrong. Just love him and support him. He will learn to control his behaviors, you just have to support him." I am sharing this with you because that gave me such great relief.

So you know, he is doing wonderfully in school (Kinder). In fact, he is above average and his teacher knows of his condition and says it has not been a problem at school - My son is aware of his "movements" and he knows that he must try hard to control it at school but when he is home he can "move freely". This seems to work for him. I have noticed that he has more movements and tick like behaviors when he is very excited or tired....but all in all, it does get better - once you let yourself get over the guilt or sadness. God bless!

 

[Kirstens]

My daughter has cms. Her onset was 8 months. She was diagnosed at age 4. She has finger/arm wiggling, tense jaw, toe wiggling. Due to the lack of information on a every little thing that comes up makes me wonder what is connected. She has always complained of body aches. She however is very tall for her age so I don't know if it's growing pains. We have a doc appt Monday to look into it. My latest concern is the fact that she has been complaining of a black spot in her preifreal (sp) vision which comes with headaches. She has to hold a nice pack over her eye and isn't able to hold her head up. We are waiting for neurologist to call back. She is a very intelligent little girl. She is in first grade and has tested off the charts in every category. I just found this group so I figured I'd ask questions to the ppl that are in my boat!