Monday, August 25, 2014

So this is coprolalia

One of the most common misconceptions about Tourette Syndrome is that the main symptom associated with TS is cussing.  If you've read my previous posts, you know that the correct term for the use of words, phrases, and gestures that are deemed socially inappropriate is called "coprolalia", and that coprolalia is only present in about 10% of TS cases.  Tourette Syndrome is the presence of both motor and vocal tics, which does occasionally (but not in most cases) include coprolalia.

Sadly, coprolalia has made an appearance in our home.  Yesterday, Monster Man started with a sound of air blowing through his teeth.  Later in the afternoon, it turned into a "fu fu fu fu fu fu" sound.  He was trying hard not to let the full word come out of his mouth, and he was doing a good job holding it back.  It was a struggle for him, knowing that he needed to say a word that he knew he wasn't allowed to say.  He kept holding back, kept trying to find other things to change it into, but he reached a point that he could no longer keep it in.

Around lunch time today, I received a phone call from the school nurse.  Monster Man was in the clinic (where he's been spending a lot of time since the school year began), and he was having a major tic episode. No big deal, we thought.  She gave him some anxiety medicine and sent him back to class, our current plan in hopes to help him make it through the school day.  About an hour and a half later, I received another phone call.  His tics were getting worse, rather than better, and he'd been taken to the clinic in a wheelchair. This has also been a little more common lately, but it was also a sign that it was time for me to pick him up from school.  When I picked him up, I was greeted with the news that the "fu fu fu" sound had morphed into the word he was trying so hard to avoid saying.  In other words, coprolalia had officially made an appearance.  

It seems lately like each of his bad tics gets replaced by another.  It's heartbreaking to watch him struggle with these tics, and they can even be scary at times.  This latest tic, however, has been one that has hit us harder than any other.  Monster Man is upset that he's saying something that he would otherwise get in trouble for saying.  It's only been about an hour since he got home, and he's already shed quite a few tears of frustration.  I'd be lying if I said it hasn't brought me a few tears myself.

We shall see where this latest tic brings us.  We're working on replacement words, hoping these will help him for now.  In the meantime, prayers are greatly appreciated!

Friday, August 8, 2014

Explosive Tic Episodes

I mentioned recently that Tourette Syndrome isn't for wimps.  I didn't know when I wrote that article that Monster Man's TS would only get worse from the punching tic he'd developed that was hurting him so badly.  It's amazing how fast things can change.

Seventy-two hours ago, Monster Man was on his way home from his third day of his freshman year of high school.  He'd suppressed his tics throughout the day at school.  When he got home, he let loose his punching tic.  It would come in spurts, lasting several minutes every hour or so.  Nothing new.  We'd seen this pattern in him several times in recent weeks.

Forty-eight hours ago, Monster Man was on his way home from his fourth school day.  When he got home from school, I learned that he had been unable to suppress his punching tic the entire day, that he'd finally let a couple of punches loose as his class was leaving the room at one point during the day.  A little concerning, but still not too out-of-the-ordinary for him.  He'd had to let loose his other tics in the past from time to time.

After all the kids were home and we'd had dinner, Georgia Boy and I left the kids home alone to go return a Redbox movie, pick up a snack for Little Man for school the next day, and get Georgia Boy's hair cut. While his hair was being cut, I called home to ask Monster Man about a homework assignment  (thank you, Remind 101 app for sending me a message while we were out).  During our conversation, I noticed Monster Man was making an unusual sound, but didn't think a lot about it at first because he tends to make unusual sounds as a result of his Tourette Syndrome.  It wasn't until he said the words "I can't stop ticcing" that I began to worry.

As soon as Georgia Boy's hair was finished, we rushed home.  We found Monster Man doing his punching tic in combination with another tic - one that looked very much like a seizure.  He would shake violently, stop to do his punching tic, and then start shaking again.  It was both scary and heartbreaking to watch, and we were left feeling completely alone and helpless because we didn't know how to make things better for our son.  We desperately wanted to help him stop, but nothing seemed to work.  After two medications, time spent talking with his girlfriend (who also has TS) online, and almost three full hours, he finally calmed down enough to go to sleep.

Yesterday, I tried waking all the kids up for school.  Angel Baby and Little Man both got around for school (rather grudgingly, I might add, due to the lack of sleep they'd received while their brother was having his explosive tic episode), but Monster Man struggled to wake up.  Every time he opened his eyes, he'd start shaking violently again, then fall asleep immediately.

He ended up missing school. Instead, he had a visit to his neurologist for a change in his medications.  He started improving a little throughout the day, but never really stopped (it's a rare occasion to be tic-free for any length of time).  He took his new medicine combination at bedtime, and he slept really well last night.  He woke up this morning ready to return to school.

Sadly, he didn't make it through the school day.  I received a call just after 1:00 this afternoon that he was in the clinic with another bad tic episode.  His teacher had tried walking him to the clinic and had to get help to get him into a wheelchair to be wheeled to the clinic after he fell to the ground in his explosive tic episode.  I made the thirty minute trek to his high school to pick him up, where I found that his sister had been called from her class to help calm him down until I could arrive.

He's doing a little better now that he's home, but he still keeps going into the tic that looks so very much like a seizure.  It's amazing how just seventy-two hours ago, we were praying for relief from his punching tic, and now we're at the point that we just want him to be able to have a good night's sleep so he can get a rest from the pain these tic explosions are causing him.