10 Months Later

I haven’t updated this in almost a year, and what a year it’s been.  I’m not sure where to even start, so forgive me if this is a jumbled mess of a post.

First things first, we’ve spent this past year in the middle of a pandemic.  Everything shut down, schools closed, and a stay home order was put in place. A quick trip to the store turned strategic as we made a list of what we needed (so we didn’t take any more time in the store than absolutely necessary), made sure we had hand sanitizer and masks and gloves. Gerry hasn’t seen the inside of a classroom since March 12, 2020.  It’s been a time.  

The whole focus of this blog is Tourette Syndrome and our experience with it, so I won’t go into lockdown specifics, etc. but a lot has happened with Gerry’s TS in the last 10 months.  There were some things added to his official diagnosis so now it’s "Tourette Syndrome with ADHD (combined presentation), mild OCD and anxiety, and mild to moderate ODD."  It’s a lot.  A lot.  

TS has a ton of comorbid conditions, so I figured we’d encounter one at some point, but I wasn’t prepared for all that he has.  We put off medication for quite some time, but started him on small doses as symptoms got worse.  He’s currently taking medication for ADHD, which is great in terms of keeping him focused and on task at school (check out the difference in his work when he’s taking meds vs not taking them) but is not so great for the Tourette’s.

These photos were taken just days apart

The ADHD medication is working really well, except that it’s a stimulant...which means it makes his tics worse.  So we added another medication to help lessen the tics a bit, which isn’t doing much right now.  And then, of course, there’s yet another medication to calm tics and help his sleep at night.  He’s handling it all in stride and is an absolute warrior.

As for the Tourette Syndrome...he’s struggling.  His motor tics have eased up a bit, but he’s got a vocal tic now that is really bothersome.  He hums mid sentence.  It can last anywhere from a few seconds to a few minutes and he’s unable to speak when he’s doing it.  His OCD requires him to speak in one full sentence, so if he starts saying something and his tic interferes, he’ll start back at the beginning when the tic ends.  This repeats over and over again all day long.  It’s very noticeable, embarrassing and frustrating for Gerry.  He’s gotten angry when tics got in the way before and he’s gotten annoyed, but this is the one tic that makes him sad.  He’s also told me that he’s scared that this one won’t go away.  I’ve done my best to reassure him and to remind him that his other tics have come and gone and the humming will too, but truthfully I’m not sure about this one.  It’s definitely his longest lasting.  I still have a few of the same tics that I’ve had since I was a kid, so this could quite possibly stick with him and that scares me, too.  

He’s such a sweet boy, but these diagnoses get in the way so often.  It’s hard for other people to see my sweet, good Gerry beyond all the ticking and negative behaviors.  I often wonder what he would be like if he didn’t have any/all of these issues.  BUT...that’s a post for another time.

We're Medicating...

It's been a really strange few months.  The Coronavirus pretty much took over the US and we've been in quarantine in one form or another since mid-March.  Overall, it's been pretty wonderful for our family (though, this takes NOTHING away from those suffering or having a hard time).  But it means that the kids have been out of school since March 13th, and they won't be going back this year.  The kids are loving it, but I know going back is going to be hard, especially on Gerry.  They've been doing distance learning, which means that their teachers email lessons every morning and the kids have to complete them from home. Which makes me the teacher.   

Gerry is incredibly smart.  He's in first grade right now and reading at an almost third grade level.  He picks up on new material very quickly and the only issue he has these days is with writing.  He hates to do it, so he fights me tooth and nail on it.  Intelligence aside, I don't think Gerry is thriving with distance learning the way he did in the classroom.  He gets distracted  and frustrated easily, and his tics have been more prevalent during our home school lessons.  His teacher continues to tell me that she's not seeing any ticking or behavior issues at school, but you can't miss it when he's at home.  I reached out to his neurologist and she agrees that he's showing signs of ADHD.  She suggested we start medication since we can really watch and see how it affects him since we're all home together.  Scott and I talked about it and gave the go ahead to start him on Clonidine.

Here's the thing.  Clonidine is the same thing as Catapres, which is what I took for my TS as a teen.  Mine was a patch and I hated it.  It helped my tics some, but I was a zombie.  I slept so hard and so much on that medication that the few years I was on it are still a blur to me.  I would pass out in the middle of the day, at my desk in school...there was literally no stopping it.  I didn't want Gerry to have to deal with that.

His sleep was kind of crappy, too.  He'd take melatonin every night, fall asleep for a few hours, and then be up watching tv at 2-3 in the morning and wouldn't go back to sleep.  Didn't matter how much melatonin we gave him.  It was like his body just didn't require the sleep that the rest of us do.  So his neurologist said that the Clonidine would help with that as well.  We started him on 0.1mg of Clonidine to be taken before bed at night.  After more than a week, we weren't seeing a difference at all in sleep or behavior and his tics were still the same.  Over the course of a month, at the neurologist's recommendation, we switched dosage, time of day taken, and considered switching meds altogether.   Ultimately, his neuro bumped him up to 2 pills (0.2mg) to be taken in the morning.  We tried that for a week before switching back to nighttime.  He was falling asleep for hours at a time during the day.  After he fell asleep at the table in the middle of a school lesson, I emailed the neurologist and told her we were switching back to taking the meds at bedtime.  It's not helping with sleep, really, but he's slightly less distracted and hyperactive during the day, and I'll consider that a win.

He had a rough few days in the beginning because it was the very first time he's ever had to swallow a pill.  But once he got the hang of it there was no stopping him, and he's a total pro now.  I'm not sure how long we'll continue on this path, but it's working for us for now.