"Complex motor tic" from age 1

[Holly]

My son has what has been called a complex motor tic. This started when he was about one. When ever he is excited by something he is seeing, whether it's a scene he's set up with his toys, a show he is watching, etc. he does a rapid hand opening and closing, shoulder rolling arm movement. This has stayed constant over the years. No waxing or waning. In the past 3 years, he also hops in these instances if he is standing. The hopping replaces the other movement when it occurs.

 

Then last week he abruptly started a new tic which was a heavy blink at the same time as a head nod to one side. It happened along with his other tic, but also in more calm times, and when conversing. I watched him doing his math homework, and he did it after each equation. It broke my heart and terrified me. Then I got paranoid, when he got loud or shrieked, was it just normal kid behaviour or something else. I felt that there was a rise in screaming, he'd just let out a loud shriek or yell for no reason, as if discharging. However this subsided within a week. The day of its onset coincided with a swimming lesson where the instructor mentioned that the chlorine levels were high that day. Could this have been a trigger?

Anyhow, it was this change that scared me into doing more research and I found this site. It's great to see support and info. I've always kind of sheltered my son, and tried to control what he ate, the kinds of activities he does, what he wateched but I always felt like it was me against the world in trying to explain why.

 

Now I feel like I am in another me against the world situation on the topic of vaccination. I am not anti vaccination at all, but without any founding, I have always been terrified of the what if. What if some chemical in there, or the virus itself, unleashes something irreversible and far worse than what we are dealing with now. With all the measles talk right now, I'm scared and confused. Any thoughts or references to actual scientific data would be much appreciated.

 

I have ordered the recommended book and am seeking a natural physician who can do some testing so that we might find some environmental or food triggers.

[lbee]

Hi Holly,

It sounds like I wrote this post myself. How old is your child now? My daughter started with her CMS (complex motor stereotypy) around 1 as well. It is similar to the way you describe your movements. They have always remained constant. Same movement over the years. Then suddenly over the last couple months she's developed tics.

 

Have you been to the John Hopkins website and read the info on CMS? Dr Singer has done a lot of research.

 

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pediatric-neurology/conditions/motor-stereotypies/

 

Are you a member of the "Motor Stereotypy" group on Facebook? There is a lot of helpful info there. Including a document that was just posted on a recent study.

 

There have been many posts on that site re: vaccines. But you'll find a lot of other good info too.

 

BACKGROUND: Complex motor stereotypies are rhythmic, repetitive, fixed, and purposeless movements that stop with distraction. Once believed to occur only in children with autism spectrum or other developmental disorders, their presence in otherwise typically developing children (primary) has been well-established. In primary complex motor stereotypies, little information is available about the long-term outcome of these movements or existing comorbidities. METHODS: Forty-nine healthy participants (31 boys), ages 9 to 20 years with primary complex motor stereotypies who were previously diagnosed at a pediatric movements disorder clinic, were identified from medical records. Parents or the young adult (if older than age 18), completed a telephone interview evaluating family history, outcome, and comorbidities including attention-deficit hyperactivity disorder, obsessive compulsive disorder, anxiety, and tics/Tourette syndrome. Standardized questionnaires assessing attention-deficit hyperactivity, obsessive compulsive disorder, and anxiety were used to validate parent report of comorbidities. RESULTS: Stereotypy onset occurred before age 3 years in 98%. In all but one individual, stereotypies persisted at the time of phone follow-up (follow-up range: 6.8-20.3 years). Positive family history of complex motor stereotypies was identified in 39%. Most participants (92%) had concern for at least one comorbid disorder, including parent-/patient-reported clinically elevated levels of anxiety (73%), attention-deficit hyperactivity (63%), obsessive compulsive disorder (35%), and tics/Tourette syndrome (22%). CONCLUSION: Primary motor stereotypies typically begin in early childhood and, although reduced in frequency and duration, persist at least through the teenage years. Repetitive movements are associated with a variety of comorbidities that often have a greater functional impact than the stereotypic behavior.

 

[Holly]

Hi, sorry it took so long for me to reply. My son is 7. Thank you for the link. We actually investigated behavioural therapy. The therapist found him to be a very bright, well adjusted, happy child. He refused to do the treatment at this point in time because my son was so blissfully unaware/unbothered by his movements. The doctor said that we would essentially have to turn it into a " problem" for him in order to get anywhere with fixing it. He felt that it would do more emotional harm and potentially impact his academic performance. This made sense to me. He said that with age, his awareness would increase, and when he his ready he may surprise us with taking control himself, or we can go for treatment at that time.

 

However, this sudden appearance of this eye blinking tic, that is different than the complex one really freaked me out. It has had completely disappeared twice since first showing up just over a month ago.

 

I am currently investigating biofeedback and will post anything I learn there. I am curious, with a complex movement like this, has anyone traced a dietary link in their children? Like a food sensitivity that when removed could eliminate the problem as with other tics? The environmental physician I am considering is incredibly expensive and would be out of pocket for us, so I am hoping to determine if there would any merit in going down that path before we set out.