Atlanta Tourette Syndrome Conference

What a great day!  Gretchen and I went to the 2014 Tourette Syndrome "Breaking Down Barriers" Conference that was put on right here in Atlanta by The Brad Cohen Tourette Foundation.  A solid day full of information about and treatment options for Tourette Syndrome (TS).  There were about 150 folks who participated and I'm so glad we went.  The day kicked off with Brad Cohen himself.  He gave us all his story and I won't lie, I cried a few times.  Growing up with TS sure was not easy for him and I could not help myself thinking through Connor's struggles to date, and the ones ahead of him. 

Hearing how Brad was able to stay positive, focus on his strength, and push forward to attain his dreams was rewarding all by itself.  It surely offered us hope for Connor's future.  I'm so thankful to Brad for doing all he has done for the TS community.  If you aren't familiar with his "Front of the Class" story, check out his book or the movie as it is a rewarding one.  It is a great centerpiece for any "acceptance" anti-bullying conversation/meeting.

Dr James Leckman from Yale School of Medicine was up next.  Dr Leckman presented some very detailed information and I was surprised how well I followed along.  Of course, I had my favorite biology teacher sitting next to me who offered a few explanations.  For all the doctors, scientists, researchers, clinicians, etc. know about TS, Dr Leckman clearly stated there is still much to learn.  He left us all with a few very positive thoughts; focus on an individual's strengths and acceptance, acceptance, acceptance.

Sheryl Pruitt (who helped Connor immensely with his writing back in 5th grade) and Dr Leslie Packer tag-teamed through an overview of regulatory and non-regulatory disorders in the TS+ spectrum.  Their talk was full of personal stories and the even more important tips/suggestions on a variety of areas familiar to any parent that has a child with TS+.  Dr Packer's www.tourettesyndrome.net is an awesome resource on Tourette Syndrome "Plus" (TS+).  The best tip I took away from their talk for Connor is to help him create a "trick book" that helps him with little snippets of formulas, checklists, and guides for just about anything that might trip him up.  An even bigger takeaway from their talk was their very successful simulation that one can do very easily and quickly gives those of us not dealing with TS+ what it could be like for a child in school that is dealing with TS, OCD and ADHD.  It was very tough and extremely eye opening.  I'd be glad to share it with anyone who would like to reach this level of insight.

After lunch the conference offered five different break-out sessions.  Gretchen and I stayed together and heard several panelists answer questions from the audience related to “storms” (rages), homework hassles, and sleep problems.  We, and most in the room, could associate with the varied information discussed.  Darin Bush (Sheryl Pruitt's son) mentioned his Tiger Trails book which I just bought and hope to publish a book review of here soon.  The session ended much like Dr Leckman's did; get our TS kids engaged in their strengths and encourage them to be the best they can be, and absolutely envelope them with incredibly positive feedback.

Dr Doug Woods from Texas A&M was a solid speaker with rich knowledge of the Comprehensive Behavioral Intervention for Tics (CBIT) strategy for helping TS patients learn to control, at some level, their primary tics.  He offered up another simulation.  This one was simple; just open your eyes very wide for a long time and described the feeling you get after a while as well as how it felt when you finally blinked.  I'm not the biggest fan of TAMU, but this (new) Aggie sure impressed me. 

We wrapped up the conference with a Q&A session with a panel of doctors.  The general topic was around current treatments for TS+ being offered from psychiatrists and psychologists, but several other topics came in from the audience.  In summary of this last session, there is clearly no silver bullet, but the last 10 years have seen much progress and should expect as much (probably more!) over the next 10 years.  It was clear that we could do a meaningful Q&A session all night long, but it was a full day and we finished up on time.

I was glad I was able to attend this first annual TS conference and look forward to the next one!  Great job to Brad Cohen, his foundation, and all that put their efforts into making this event a success!!