Thursday, January 22, 2009

Sleepy Day

On January 5 Graham had an appointment with a neurologist. I went into this appointment knowing that Graham has Tourette Syndrome, but wanting to avoid leading the doctor in that direction, just in case I was wrong and something else was going on. I wasn't wrong. The doctor kept us waiting for over 2 hours, but he was so lovely that within a minute of meeting him my anger melted away. He was great with Graham and listened carefully, asked lots of questions and spent his time examining him. Then, as if announcing that he prefers butter over margarine, he declared that my son has Tourette Syndrome. Just like that. We discussed some testing, medication, scheduling a follow-up appointment and he was on his way. He had a doctor shadowing him that day. I gathered my children and belongings and as I opened the door, I heard our doctor telling his shadow that Graham is textbook Tourette's - classical.

I didn't have a good day that day. Like I said, I knew going in that we were dealing with TS. It didn't come as a surprise to hear him officially diagnosed - it just came as a big, fat punch in the gut. My son is textbook, classical Tourette's. There's no doubt in the doctor's mind. Since I started suspecting this in Graham, and doing research, and discussing it openly, I have heard countless friends say that they never noticed that I have TS. You can't even imagine how this shocks me. Since I was around 7 years old, I remember feeling like an oddball, trying desperately to hide my tics and often failing. I had a frog sound that annoyed my family. I had a lip-curling tic that the clarinet section noticed in band. I had so many tics that I tried to disguise, which I now learn is a great coping mechanism for TS sufferers.

So Italicwhen I heard that doctor pronounce my son's official diagnosis, years of discomfort built up in me. Parents want better for their kids. We don't want our kids to suffer. We don't want them to feel weird. We want them to be comfortable in their own skin, to be well-liked, to excel.

I've done fine with TS, I really have. According to others. Many of my tics are what we call "internal", meaning that they require me to tense my muscles over and over. It isn't comfortable. I still have tics that make me feel that I appear odd to others, whether or not they actually notice. The mental energy that goes into TS for me is indescribable to someone who doesn't deal with this.

Ohhhhh, I hate this for Graham. He, however, doesn't seem terribly upset . . . on the surface. When I talk to him about TS he seems pretty open about it. He asks questions, talks pretty openly. I'm worried, though. I've noticed a few things that are cause for concern that I want to talk to the doctor about when we reconvene to discuss the results of his testing.

Speaking of testing, he had an EEG today. That means that last night Alif kept him up until 11, he got to sleep from 11-3, I got up with him from 3-5 and Alif took over from 5-7. His test was at 8. I couldn't imagine that he would be able to sleep in that office, sitting in a recliner, with an electrode-filled cap strapped on, plus electrodes on his arms and earlobes, with a technician and me both staring at him. Well, he did. I couldn't believe it. He did just great! I think this test was just to rule out seizures.

So - his next appointment is next month. We'll see where we go from there.


  1. Well, I'll definitely be praying for you guys!

  2. Wow, Emily, that's a lot to take in, as a mom and fellow TS sufferer. I'll be praying that all your questions are answered and that Graham will be have the best care possible.

  3. i will be praying for you friend!

  4. Wow, what a lot to deal with. testing is stressful. Praying for you as you head forwards.

  5. (((emily))) graham is incredibly lucky to have mother who can so thoroughly understand what he's going through and help him on the journey!

  6. Wow, Emily. I'm glad you have a doctor you like. I'm sorry that you've suffered on your own for so long, and grateful that Graham doesn't have to.

    Honestly, I really never noticed your tics. Do you notice when I tense my thigh muscles over and over one at a time, or blink one eye at a time back and forth? I never even thought about it, but spectrum disorders run in my family, too. OCD and Tourettes. My dad and Brook have restless leg syndrome. Do you know if that's related?