It's been a while

I know that it has been a while since I've updated here.  The truth is, there hasn't been a whole lot to report.  When it comes to a child with TS, that's definitely a good thing!

Monster Man started taking Clonidine over the summer.  When he first started taking it, he had a few side effects that were a little bothersome.  We almost took him off of it, but decided to give it a few more days since the side effects, while a little worrisome, only happened a couple of times.  Sure enough, once his body adjusted to the medication, the side effects went away.

When we first put Monster Man on Clonidine, our biggest concern was the rage issues he was having.  The neurologist told us that the Clonidine wouldn't help with the rage itself, but that it could possibly be improved by helping him control his tics.  At the time, his rage had gotten so severe that he had gone from having a single rage episode, lasting about an hour, every few weeks - or even months - to having as many as 12 a week, lasting anywhere from 45 minutes to 2 hours. 

Interestingly, the rage improved drastically, but the tics seemed to explode!  In the six months that Monster Man has been on Clonidine, he's only had two rage episodes, and both were only about 30 minutes in length.  And if he accidentally forgets to take his medicine (for example, if he spent the night at a friend's house and failed to take it), we can tell the next day because his behavior is so different.  On the other hand, he went from ticcing only a few times each hour to ticcing almost non-stop!  He suddenly had to have his fingers to his mouth constantly.  If he wasn't chewing the skin around his fingernails (which I previously mentioned), he was twisting the tip of his tongue with the tips of his fingers.  He also added a tic similar to blowing a raspberry, but it sounds similar to a horse (my hubby calls it the horse tic), which he had to do multiple times in an hour... Sometimes it seemed he'd only move his fingers from his mouth to do the horse tic before returning his fingers to his mouth once more.

He has learned to control his tics somewhat in certain situations.  He doesn't seem to do the horse tic very often at church, and I've been told he rarely does it at school either, but he has to release it all when he gets home, sometimes blowing raspberries for two or three minutes straight.  The fingers to the mouth thing, though, seems to be pretty much a constant.  I've even seen him twisting his tongue on the ball field in between pitches while at bat!  It can be really interesting at meals, when I've seen him pick up tiny pieces of food (sometimes even single grains of rice), roll them into even tinier pieces, and then roll the food along the tip of his tongue with his fingers, rather than twisting the tip of his tongue.

About two weeks ago, the doctor increased his dosage of Clonidine in hopes that it will help control the tics as well as it has been controlling the rage.  So far, we've noticed a good improvement.  His fingers aren't going to his mouth as often as they were, though he does still do this fairly often, and the horse tic doesn't seem to be present so much either.  We're seeing a much happier Monster Man than we've seen in a very long time, though he still has his moments (but what twelve-year-old boy doesn't?).  It's so nice to see him happy again!

Adjustment Period

Monster Man has been going through a bit of an adjustment period.  About three weeks ago, he started taking Clonidine to help control some of his tics.  The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage.  We were told that it would take over two weeks before we start seeing results.  So far, we're not sure if the results we're seeing are an improvement or not.  Some of his tics have seemed to decrease, but others seem to have increased.  He also seems a little more 'jumpy'.  His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.

This past Saturday, we left for a camping trip to the mountains.  Sometimes, he seemed much better than he previously would have.  In the past, he's been very nervous going over the mountain roads, afraid he'd fall off.  He didn't seem to have those fears this time.  However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic.  He had gotten upset because he was ticcing a little and noticed someone was watching him.  The stress from being stared at caused him to start ticcing 100 times worse.  I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL).  A few minutes later, he was happily drawing again.  Seeing him struggle like that was so hard on both me and my husband.

We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening.  We're also keeping our eye out for signs of improvement.  We're really hoping that this medication will help improve Monster Man's symptoms.  He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.