Hello ,

My 8 year old boy has been doing some involuntary movements it went from a lot to not much but we are still concerned . We stopped all suplements right after this reaction and he is not on steroids yet. We got a Neuro.appt scheduled for Sept but we feel we should not wait . Has any one experience this with their child ?

Thanks s lot

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YES YES and YES. It's been maddening. I am so glad you posted this. I also have an 8 year old. The tics/involuntary movements shot very quickly from years at not much to all of a sudden severe, I say. For years it had been trouble getting the first syllable of his first word of a sentence out. Not stuttering proper, but to the untrained ear it sounded so. His speech therapist said it is a disfluency. But He blinks his eyes fast, head sort of turned slightly to the side facing nowhere in particular, until the word came. And he seems out of it. It's Just a few seconds normally, maybe 5 tops. That's been since he could talk in full sentences, Then this year to me it's like he has full on Tourette's all of a sudden. Out of nowhere he fires off a string of more swear words than I can, and I'm a swearer. But the swear words he fires off aren't the ones I use, they are all F this F that MF this. He will be quite content, a great day, laughing together with me and then out of nowhere his eyes go what I call wild, vacant like, and he will just MF and F this GD that. It's like he doesn't hear me or see me. He's off somewhere that is not present. His voice changes. It's grippy. And scary. Then all of a sudden he will say what just happened. I'm sorry mommy. Along with the swearing came bizarre involuntary movements other than the blinking eyes and turned head. Strange hand placement, the top of his hand down instead of the bottom, elbow in the air, and shoulder movements as if he's trying to get something off it. The hand thing isn't just sometimes it's all the time and he's not even conscious of it. He also started putting his forearm in front of his face as if to sneeze but he's not sneezing. I looked up tics and Tourette's on the Internet, he's textbook. There are many more tic like movements but no one seems concerned other than me, Is any of what my son is doing what your is?

Hi Mirtha,

Our neuromuscular doctor, Brenda Wong, and her amazing team see DMD patients from all over the world...so they have lots of experience in every area of DMD. When our son started having motor tics a couple of years ago, we requested her input. She let us know that the team does see motor tics in both their general neurology clinic and in their Duchenne clinic. If the tics are not disrupting social or school functioning, the team doesn't do anything, as most times the tics wax and wane and minor counseling of parents/care providers and patients is all that's needed to take care of them. We've found her advice to be true -  our son's tics do come and go, and while there, we don't make a big deal of it. Sometimes, we'll casually let him know that they're happening, he'll become aware of them, and the tics will drop off for a while. Sometimes they just go away of their own accord. They do come back, but are not affecting him adversely.

Thanks so much for your reply ... Yes . Tics have gone away .. Today .. He had very few but that is it ... I feel better after reading your comments .

Thank you so much !

Yay for them going away!  :) I hope they stay away for good. Yeah it was worrisome to me too when tics began in our son, but we breathed a sign of relief after talking with our brilliant physician who treats hundreds of Duchenne patients a year. We love our doc  ;)

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