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Severe tic/movement disorder


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I'm hoping someone can offer suggestions to me! On Feb 2nd, my seven year old son came to me saying there was something wrong but with his right arm. It was tightening and moving on its own every two seconds. Three days later, he got off the school bus and it was now in his right arm, shoulder, neck and head. We went to he ER because I didn't know what was going on! By this time he was having full body shock like movements every few seconds and couldn't walk. The MRI was normal and they said he has an acute tics disorder. I'm so upset, scared and feel frustrated with medical care in my area.

Since then he has had severe head bobbing, sudden jerks that have knocked him off the couch and recently his feet and legs cannot stop moving. We tried klonapin and had a reaction and are now on clonidine. 6 weeks ago he was healthy, riding his bike and playing outside. Now he's withdrawn, embarrassed by his movements, and some days they are so bad he can't walk because of his legs and full body tics. He had asthma and allergies as well.

 

I need help!! Can anyone offer suggestions?? He is now a totally different child!! I'm devastated.

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Hi and welcome!

Sorry to have to post and run, but I just wanted to let you know you are not alone and that there is support and information here.

 

May I ask if your son had any kind of illness or infection prior to the tics starting ?

 

There are a number of things that can trigger tics, so I do suggest you perhaps start reading the Helpful Threads section pinned to the top of this forum

 

The main section of the website has info like http://latitudes.org/conditions/what-is-tourette-syndrome/

 

More here http://latitudes.org/

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Hi -- We know how scared you must be, and your young son as well.

 

Chemar was asking about any illness or infection because when tics start up dramatically like this it can be due to an infection that is affecting the brain and central nervous system. That is called PANDAS or PANS. (You can see our Forum on this site) What do you think about that--might there be a connection? Have kids at school had strep or other infections that you know about--or family members? Did they do a strep test at the ER? A bacterial or virus can causer reactions like this.

 

It could also be caused by a major environmental insult (like a toxic chemical exposure, major mold exposure at home or school, a pet that he is highly reactive to, a change in medication etc). Since you say he has allergies, this avenue is a real possibility--or a combination of factors could be involved.

 

In the meantime you can take some basic steps to try to calm his nervous system. We can share more on that.

 

As you point out, he was healthy and fine 6 weeks ago. His body just needs to return to that state. Hang onto that thought. We want to stick with you until you find some help. Please write back. Where do you live?

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