The med decision

My grandmother is 91 and told me a few years ago that her doctor had prescribed her a daily medication for something. She told me that she knew that she was acting like a petulant child, but she had gotten along just fine until now without taking anything, and thought she could go on doing so. I figure by the time you're 91, you should probably get to make that choice. My grandma also tells me all the time that her Italian half and her Old Yankee half battle it out. I think when medication comes into play, it's that old Yankee half that wins- the puritanical side gets the edge. I'm not sure if this is genetic, or just the way I was raised, but I hate the idea of medication. I have to be practically on my death bed before I'll take a pain killer, and when the relief finally kicks in I tend to think "you idiot, why didn't you do that sooner?" My husband seems to have the same general feeling on this, I can't tell you how bad his allergies need to get before he realizes he should probably take some antihistimine.

Well, with that mind set, I remember marching into the Neuropsych office, jaw set, thinking "I WILL NOT let them try to put my baby on medication." So we went over the diagnosis and the options and my husband and I both said "no meds". The doctor told us that Liam had a Tourette Syndrome diagnosis that was comorbid with ADHD. The hyperactivity in Liam manifested itself not so much in the typical bouncing off the walls, but more a lack of focus. He explained to us that the medications that he could give Liam to increase is focus and help the ADHD would increase the tics. And that there were medications that he could give us to help with the tics. That was at the end of March 2010.

One of the recommendations from the Neuropsych evaluation was that we go to see a Neurologist. We had already been involved with the RI TS Association by this point and got the name of the Neurologist that several of our fellow TS Association members were using. We went to see Dr. Brown at the beginning of July to make sure that we were "only" dealing with TS and there weren't any other neurological issues. He told us that he agreed with Liam's TS diagnosis, but disagreed with the ADHD diagnosis, and saw some OCD behaviors. He explained that many TS children that he sees (he felt) were misdiagnosed with ADHD because the tics cause the children to lose focus. He asked me to imagine trying to read something and then having to rapidly blink my eyes during whatever I was reading. He told me that he thought meds could really help Liam with his concentration, and peer acceptance, and that we'd be medicating to try to alleviate the tics. My stomach knotted, I had that immediate "no meds" reaction. He told me he was going to do something unfair and ask Liam what he wanted. While I know this is going to sound stupid, I don't think I ever thought about asking Liam. I just had my immediate "no meds" reaction. I wanted the world to adjust to Liam's tics, and for Liam not to have to endure any side effects of drugs. At that point Liam said that he absolutely didn't even want to think about trying them. Dr. Brown said that that was our answer. He then told us that we needed to decide what the line in the sand was-when we would know it was time to start the meds. In my mind the word that immediately flashed there was "never" but after that was "maybe".

August 2010- we had just been on a camping trip for a week and had been home for a day when we went to a party with a bunch of children that Liam didn't know, they were from Diane's play group when she was little. He had a wonderful time while we were there and I realized that I noticed hardly any tics. When we got home, the line in the sand that Dr. Brown had spoken of had been crossed. I guess I didn't realize it conciously, but when you're a mom, watching your child struggle like that is the worst feeling in the entire world. Liam was having horrible full body tics. He could not walk across the room. We were getting ready for soccer practice and his legs were ticing so badly that I was having a hard time helping him get his feet into his cleats. His arms were ticing so badly that this simple task of putting on his shoes would have been impossible for him to handle by himself. On the way to soccer practice I heard a soft voice from the back seat say "mom, I think I want to try the medicine".

We've had Liam on the clonodine for almost a month now. It has not been "the answer" but there have been two days where we've forgotten meds at night and we've noticed a huge difference the next day in the amount and severity of the tics. I read on message boards and other blogs and the face book TSA page about the meds that others are taking and wonder how much, how many different ones, what's the line in the sand when we switch to something with worse side effects that may actually backfire and make the tics worse. I guess there's no right answer, but for now we're getting by.