Thursday, June 4, 2015

The latest in all things People Hater

I've lost track but I think we have done 7 brain training sessions.  I had a nightmare the other night that whatever they are doing to him worked in reverse and made the Tourette's Syndrome worse and they didn't know why.  I think this stems from the fact that after every session his tics are REALLY bad.  They were really bad yesterday and even worse last night.

Tommy's struggle this summer is that his friends aren't really available during the day.  Most of them are in a summer program and the two boys up the street went out of the country until September.  Tommy didn't want to do a summer program, so he's basically doing nothing.  The first week has not been easy.

Last night he was playing with a friend and I'm not sure what happened but all hell broke loose and he came home super upset.  When the kids are messing with him (not in a mean way) he takes it wrong and flips out.  His impulse control is non-existent, and those of you who know him understand that he can get really LOUD. 

He got home and was upset and the tics were so bad it's like he was having a seizure.  I pretty much melted down while I was talking with his mom...too much going on right now and I'm feeling overwhelmed.  Adrian is working his butt off burning the candle at both ends and we are stressed.  I feel guilty because I won't be home the next 2 nights and worry about Tommy.  I feel like I'm on one of those things at the park that spins super fast and I can't get off and I want to throw up!

I guess the point of this blog is that Tourette's Syndrome just doesn't effect the person afflicted, the whole family deals with it and it is not easy. 

Since it is Tourette Syndrome awareness month until June 15, here are some facts for you:

  • One in 100 people, mostly males, have Tourette's. 
  • There is no cure for TS.  Yes, people can learn to control it, but it's very difficult.  Think about your nose itching and you can't scratch it.  The more it itches the more agitated you become, but you can't reach it, you can't make it stop.  That is what it's like to hold in a tic, it can be physically painful.
  • About 25% of children with TS will outgrow it.
  • There is no medication specifically to treat TS.  There are drugs for things like high blood pressure, heart conditions, migraines, etc. that have good results in children with tics.  For Tommy, many of these worked for awhile, but then they just stop.
  • Tourette Syndrome is not just verbal tics.  Lucky for us, Tommy's tics aren't verbal.  If you ever come across someone who is making noises like throat clearing, screeching, etc. it is possible that they have TS.  Be kind, don't stare.
We are looking forward to the next couple of weeks.  Between 10 and 12 treatments we hope to start seeing positive results from the brain training, in the form of reduced anxiety and reduced tics.  Stay tuned.

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