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A couple of questions about Tourette Syndrome

Hey everyone! Just wanted to post a couple of questions that I received in the past week. Perhaps all of you here can help answer them!

  • Would you be offended or embarrassed if someone came up to you because they saw you ticcing and asked you if you have Tourette Syndrome?
  • My 8-year-old son with TS has trouble falling asleep at night. It is so hard for his body to relax. It can take hours for him to finally fall asleep. I’m just wondering if anyone had any tips. Thank you!

RuthieP

5 Comments

  1. I use Melatonin for my normal sleep issues. I imagine there would be no difference in using that for someone with TS unless it is affected by other medication. Look into it!

  2. 1. I wouldn’t be offended, but surprised that they knew what I was doing. I would be happy to answer any questions the person would have to make people educated about it instead of believing the stereotypical misconceptions.

    2. I have a tip for your son! There’s this thing called a tangle toy that is an amazing toy. It was originally designed just as a toy, but people’s testimonials show that it helps with so much more: OCD, ADHD, Sensory problems, habit breaking (smoking especially),stress, Autism, and what I and Jaylen Arnold have found, tics! You just get him to twist it around before he goes to bed. Make sure he’s relaxed and not bouncing off the walls. Let him twist it in bed too if he’d like, because it calms tics down. Plus they’re just fun to have.

    Here’s the link to the sight: http://tangletoys.com/ I think the cheapest ones you can get are Tangle Jr’s that are about $3.99. Please please please let me know if this has helped him out! Thanks!

  3. I’d be surprised if someone asked me if I had Tourette Syndrome. I do a pretty good job of keeping my tics under control around most people. Almost all the people i know, aren’t aware that i have Tourette Syndrome. Only my parents, my siblings to an extent, and a couple close friends. Most of the time I don’t tic around my family as much either, but would rather go to one of my friend’s house to tic instead. So, I’d be surprised that they noticed my tics in the first place and a bit impressed that they thought it was TS. Most people just chalk up my tics as quirks if they do notice them, but I don’t think I’d be embarrassed or upset. I’d probably just tell them that I did and ask them not to tell anyone else please.

    In regard to your son, have you looked into any medicines for TS. I know a lot of kids have issues with the side effects and that it isn’t worth taking the medicine for. If he is on a medicine, talk to your doctor about his trouble falling asleep. If he was on a medicine, and went off due to side effects, ask your doctor again to see if there are any other combinations he can take. I had to switch from Clonidine (Catapres)because it gave me mood changes and I was really impulsive as a result to Tenex (Guanfacine). There isn’t any harm in asking your doctor for other alternatives. In addition to medicine, ask your son’s doctor about cognitive behavioral therapy targeted toward tics. This can help over time with the tics in general and eventually he will be able to go to bed easier.

    I know what i just said isn’t really a quick fix, but give it a try. As for something that might help right away, in my experience when I am ticking a lot and can’t stop, there is only one thing that helps me. I have a friend who realized that when I start whooping (the main tic that I have trouble stopping), that if she does my nose touching tic to herself that I will do the same. So, I end up transferring from the whooping tic to the nose touching tic. The nose touching tic is much easier to stop. So, maybe you could try something like that with him. Other than that, I guess if he has a big important day coming up that he needs sleep for, I’d try (at the last resort) giving him a bit of Benadryl. I don’t think this should be your first option though by any means.

    Best of Luck!

  4. i would never be embarrassed! its part of who i am! but i probably would be shy and a little nervous because im like that with new people. but those of us with tourette should be proud of it. its part of who we r!

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