Tourette Syndrome Diagnosis

Soon after Our First Recollection of Tics, we started a conversation with Connor’s pediatrician that lasted about a year. To try to help Connor control his emerging tics, we tried some medication at that time, but as most folks know there is no “TS cure”. Several different drugs can be tried. For Connor, we tried a drug that actually was a blood pressure reduction medication. Connor would take this in the morning and during the school day it did greatly reduce his tics, but he also reported it made him feel very groggy.

On this medication, Connor would be exhausted by early evening and crashed hard every day. With letting Connor and his pediatrician decide what our next steps were, Connor felt strongly that he’d rather deal with the tics than to feel so, well…, drugged. This same type of medication may be the right fit for many others, it just isn’t what Connor wanted for himself at that time. As we got off the meds his tics started ratcheting up again in duration, intensity and frequency.

Upon a referral from his pediatrician we set up our first visit to a local neurologist practice who specialize in treating children; Child Neurology Associates.  I would surely recommend this group of doctors, and Dr Howard Schub in particular, to any family in the Atlanta area that is looking for a recommendation.

My wife, a biology teacher by training, surely did her "homework" and had been researching tics and TS before our first meeting.  She had shared all of her reference points with me and was making sure she, Connor and I were discussing the upcoming meeting.  While we were talking in terms of TS, my brain was constantly telling me that Connor just had "a few tics" which I guess I was still thinking he'd grow out of as much of the reading I was doing suggested was possible.

After a thorough interview & check-up by Dr Schub, he looked us in the eye and explained his diagnosis of Tourette Syndrome for Connor based on his continued (greater than one year) expression of at least two motor tics and one vocal tic for this entire period.  He talked a lot and I pulled it all in, but I simply didn’t prepare myself to hear an “official” diagnosis of TS.  My wife had been preparing me for this, but I guess I just wasn’t ready to hear that this was something Connor would have to deal with from this point forward.

I was stunned all the way back to the cars (I had to go back to work after the appointment) and my wife could tell it.  She already knew in her heart that Connor had TS and needed this confirmation that it was real and not just her layperson’s diagnosis.  This just gave her that rally cry she needed to start being the absolutely best mom she could be for her son with TS (BTW, she is the absolutely best mom she could be for Connor!).

I on the other hand really didn’t prepare for this.  I guess I was simply in denial prior to hearing the TS diagnosis.  After they left I sat in my car for a while crying as the cold fact that Connor has to deal with this going forward overwhelmed me for a little bit.  I pulled it together and like my wife, saw this as a rally cry to be the absolute best advocate I could be for Connor and to become an educator of TS for others.  

I am grateful we did get Connor’s diagnosis when we did and simply did not just keep living in a wishful/naive mindset that these tics would just clear themselves up.  I sure wish they would, but even now, years later, this is simply not the case.  This diagnosis has let us accept this condition and focus on understanding how TS affects Connor and doing everything we can to make sure Connor has the best opportunity to do everything he wants to without having TS being a roadblock to him.

I’m also grateful that we were able to get this diagnosis early in grade school as it let him accept it as well while he was maturing through these years.  I could only image how much harder this would have been for him to hear as a formal diagnosis many years later.  Being years later now (he’s in middle school), Connor has had time to learn so much about TS which has helped him to understand what is happening to him and to be as educated as he can be about TS.

My intentions for this blog posting were to simply share this experience in case it might help someone else who has been through a similar situation to know they are not alone as well as to demystify the process should someone reading this is considering scheduling an appointment with a neurologist about their, or their child’s, tics.   My recommendation is to go ahead and do it.  While they can be scary initially, the only way to move forward is to get all the facts you can.