Friday, September 14, 2012

Another tourette boy?

Benji went to his first full day of Kindergarten today. He'd done two half days before, but this was his first full day.

He was SO excited. Benji has always been my "See ya, Mom!" kid. He's the only one who went willingly to nursery and kicked me out, for example. So he was totally okay trotting out the door this morning and handling things himself.

And he came home happy. Unfortunately, he didn't eat his lunch at all because he was afraid it might have rotted by the time he got to eat it (and I gave him fruit and chips--none of which rot in 4 hours!). I hear that right after lunch he had one meltdown (but only one) but nobody from the school called me, so I'm guessing they got it taken care of. I hope so, anyway. Caleb and Anda both happened by while it was happening and gave him love and tissues and tried to help him stop crying--I'm so glad they were there at the right time!

Anyway, he came home happy. And he came home with a tic.

It's a really obvious shoulder-abdomen tic that is undeniably ticcing and not something else. This fascinated me because he also came home able to sit in a chair and ask and answer questions calmly, without jumping around, running, or touching me excessively. And without repeating the first entire half of his sentences over and over.

And suddenly it occurred to me that he might have Tourette Syndrome, just like Caleb. I have suspected, off and on, for a couple of years that it might be in Benji, too, because he did this eye-blinking thing. But I wasn't sure if it was a tic or if he was mimicking Caleb. Benji is an incredibly talented mimic (I swear the kid is going to be a Broadway star--all the "annoying" things he does are considered talents on Broadway, just not in Sunday School). So I wasn't settled on whether he was mimicking or ticcing, but it didn't matter because there isn't a good treatment for tics anyway.

So I was telling Tim about this new tic and, in  the course of a couple of different conversations about it with Tim, I realized (because Tim pointed it out) that Benji repeating entire half sentences over and over is probably not him trying to rephrase things just right--it's probably a tic. In fact, Caleb used to do that, too. He just repeated smaller phrases than Benji does, but the behavior is the same.

Then I realized (because I read it in an article as I was doing some research) that Benji's completely annoying habit of pawing at me while he talks is probably a tic. Apparently touching other people is a common tic.

And it occurred to me that the excessive running that Benji does might not be ADHD or SPD (although I'm still absolutely convinced he has SPD). It might be a tic. He often sways or wiggles and then runs while he's trying to tell me things, and today it was striking that he didn't. He did that shoulder-abdomen thing instead. So that's when I thought--I wonder if the running is a tic? I wonder if he tics by hopping up to run and then finds himself across the room or in the front and then just does something there, like touch the blackboard, simply because he himself is trying to comprehend why he's there and why he needed to get up and run and what the heck is going on. I wonder if the trouble he gets in sometimes is because he is trying to justify his tic to himself. When Caleb was 3 and then again when he was 5 and we realized there was something going on, I asked him if he did that on purpose after a tic, and he said, 'Of course I do. I meant to do that.' He was trying to comprehend what his body was doing, and he figured he must have chosen to tic, probably because he felt the premonitory urge (a warning that you're about to tic, or that you need to, kind of like you just know when you're going to sneeze and the feeling doesn't go away until you do) and figured he must have chosen to tic to get that to go away.

Knowing that the repeated phrases, the eye blinking, the pawing at people (who would have guessed that one?!), the fact that his tic wanders or changes from place to place around his body, the sleep disorder, the ADD symptoms all go together and absolutely indicate Tourette Syndrome has caused me to step back and look at Benji with new eyes.

One of the big challenges for families with TS is identifying what in the kid is a tic and can't be helped and what are just bad habits that need to be addressed. When he picks his nose, do we mention that or ignore it? When he stutters through sentences, do we get speech therapy or just wait for the tic to drift somewhere else? Is that clearing throat sound asthma that needs medication or is it a tic that needs to be ignored? And if you open the door to running, pawing, jumping, etc...where are the lines? What is ADD distraction and what is his head turning to the side when his brain is still completely with me? What is ADD movement required to get the brain focused and what is purposeless tic movement? How much of the jumping around his his normal, exuberant personality and how much is a tic? When he throws himself to the floor in the grocery store or licks a window or takes the clocks at the store down and changes the times on all of them, is that ADHD, a tic, a tic followed by a purposeful behavior to justify the tic, SPD overstimulation, or just bad behavior? You respond to each differently. You can bet I'm going to be watching Benji a lot in the next little while, feeling this one out. 

I learned today that TS (Tourette Syndrome) is genetic, so it's no surprise that more than one of our children would have it. Tim and I are wondering which family it came from--or if it's in both families. It's actually quite a bit of a surprise with all the siblings, cousins, nieces and nephews, aunts and uncles we have that nobody else has kids diagnosed with TS. We've seen clear evidence of other kids in the family with SPD, ADD, Hypokalemic sensory overstimulation disorder, DSPS (the sleep disorder), fibro, profound giftedness...all the other genetic things we carry. Mostly we know which of our four parents those things came from. So why not this one? Is nobody identifying the tics (since eye blinking isn't always obvious), or is it just not expressing itself and we just got lucky? Or are people just trying to discipline it out of their kids? I could totally see that last one. Even knowing about Caleb's TS, I've tried many many times to get Benji to just finish his sentences already, to get him to stop pawing at me, to get him to sit still--and that after I already identified the eye blinking as a probable tic. I'm shocked that I didn't rightly identify the palilalia (repeating your own phrases) even though it was nearly identical to Caleb's!

So what I'm wondering (and Tim is wondering) is what triggered the sudden development of a new tic right after the first full day of Kindergarten? Stress? Lack of sleep? Hunger? All of those things usually exacerbate TS. But the development of a new, dramatic, completely-unrelated-to-any-of-his-other-tics tic? I am wondering if someone put their foot down and said "If you can't be still and not run, you can't come anymore" and that was so traumatic to Benji (because he wants so desperately to be in school and to succeed at it) that it caused his tic to shift from running to the shoulder-abdomen thing. The rest of today, he did the shoulder-abdomen thing a lot, but I've almost never seen him sit so still for so long when there wasn't a movie on. And I've never seen him talk to me for extended periods like that (extended like 5 minutes straight) without hopping up, squirming, running off and coming back, pawing, poking, dancing, squirming again, and eventually getting so stuck trying to finish a sentence that he walks away.

Has TS been keeping this poor kid captive all this time, slave of a body that acted without his permission and to his consternation? And then for him to get in trouble for it....yikes. Poor Benji!

For Benji more than most kids, a TS diagnosis would dramatically change things--probably in ways that will make him much happier, even if it doesn't make it easier to take him to the grocery store.

Interesting notes: Did you know that up to 90% of people with Tourette Syndrome also have ADD, but that stimulant medications make the TS worse, so it's harder to treat?  And, interestingly, it turns out that sleep disorders are common comorbid conditions with TS. So I guess we fit right in, don't we?

1 comment:

Sarah said...

My child with the most sensory orientation has tics that seem to come at a certain time of year. He blinks his eyes very firmly and and twists his head to the side slightly at the same time. I asked his neuropsychologist and he thought that it might be a seasonal allergy and that the eye-blinking relieves the pressure.

It is interesting to think about what other "oddities" might be tics...

We haven't sought out a diagnosis, but have just worked on coping.