Meeting with the Tourette's Support Group

So confused of what we should do or not do with Thumper and his tics, we looked forward to our first real meeting with our local chapter of the the National Tourette's Syndrome Association.  This could be a chance to really talk to others and ask questions.  

We met on a Tuesday evening and right away it was very interesting to see the majority of these parents with kids with Tourette's all had kids in the 4th grade just like Thumper.  It was a small group that night, but there were 3 sets of parents each with a 4th grader, and then there were some adults with TS as well.  

Here some of the tics were kicking, jerking, coughing, head bobbing, laughing......I kind of felt guilty bringing Thumper there when his tics seemed so mild as compared to some of these other kids.  But it didn't matter.  I guess they were all different but all in the same boat.  

I began asking about this tic reversal therapy and medications.  The group didn't say much about the therapy, but they said sometimes it works to make a more noticeable tic less noticeable.  One of the young adults there with TS said he used to always have to raise his hand up as one of his tics and he didn't like it because people were always calling on him in class.  So he was taught if used an alternative behavior, such as touching his finger to his nose, that it would satisfy the need to do that tic, but it was less noticeable and he wouldn't be called on in class all the time.  This made sense to me.  I guess Thumper's tics were a little different, but true, he had told us himself that sometimes he could touch below his nose in a way that would relieve his nose scrunching and face scrunching tic so he wouldn't have to do it so much.  

When we brought up medication, it was interesting.  A lot of the parents already had their kids on all sorts of medications, but it seemed like these kids had a lot of other issues.  As we continued going to these group meetings, we found out that Tourette Syndrome seemed to be the lease of these kids' problems.  These other kids had ADHD, ADD, anger management issues, behavioral problems, learning disabilities, and more.  So really, they were already on all these drugs.  Some of the adults spoke about trying different medications over the years when they were growing up, but they all spoke negatively about them.  The consensus in the end was that all the medications made them feel out of it or too tired to live their lives.  They said some helped a little but would stop working, or some didn't notice any improvement, but just made them fee out of it.  

So, nice and supportive as this group was, I don't know that they really helped me with the decision on what to do with Thumper.  Well, they did make me feel that medication was not the way to go just yet.  We would have to look into something else to help Thumper.   We went out and bought some melatonin for him to use at night if his tics were acting up at bedtime.