It's Tourette Syndrome Awareness Month!

 May 15th-June 15th is Tourette Syndrome Awareness month, and I look forward to it each year because it gives me a chance to talk a bit more about Tourette Syndrome and how it affects those living with it.  This year has been a bit of a tough one for Gerry as far as his tics are concerned, but he's handled himself so much better than I ever could at his age.  

Each day I share a few facts and/or anecdotes about TS on Facebook and Instagram to bring awareness to it.  Last year, a friend of mine from high school who I had NO IDEA was also diagnosed sent me a message after I had posted during awareness month, and it was so awesome to connect with him.  He'd been diagnosed after high school if I remember correctly (and, J, if you're reading this feel free to correct me) and neither of us had been aware that the other had the syndrome until I posted about it.  Crazy to think about, but kind of cool, too.

So buckle up for a month of TS facts and info! #TSAwarenessMonth2021

Educators Are SO Important

 A wonderful thing happened a few weeks ago and I wanted to share it here.  

Gerry's tics have been increasing in both frequency and severity the last few months.  His most noticeable one, and the one that bothers him the most, is a hum when he's trying to speak.  It stresses him out, which makes it even more pronounced and noticeable.  His teacher is absolutely amazing and she reached out to us to ask if we'd be okay if she taught a lesson on Tourette Syndrome, and asked Gerry's permission to speak specifically about him and his tics and then let the class ask questions if they had any.  Gerry was totally on board and super excited.

Instead of re-typing it all here, I'm just going to share what I wrote on Facebook.  This was my Facebook post:

To say that his teacher nailed the lesson would be severely understating just how amazing it was.  The kids all paid attention and asked good questions, and it was a great way to "put it out there" for them instead of just letting them wonder why the weird kid is making noise again.  I was so impressed that I wrote an email to the principal and superintendent to let them know what a great thing she did.  I only hope that all of his teachers through the years are as accepting and willing to help educate the class.  

  

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.

Tourettic's Unite

Boy, I wish more people knew/understood this.  

One of the most frustrating parts of the whole Tourette Syndrome "thing" are the symptoms and a person's ability to suppress them.  This entire school year, we've witnessed Gerry ticking away like crazy at home.  But, every time I ask his teacher about it she says that he never does it at school.  This has happened so often that I started to wonder if maybe he didn't really have TS and I was just seeing things and being paranoid.  {Thank God for our amazing neurologist who talks me down and reassures me at every appointment that this is normal and I'm not going crazy or suffering from some form of Munchausen By Proxy}.  

 

I think part of the reason for other people not realizing that Gerry is ticking is because they just don't know that that's what he's doing.  To most people, it looks like he's just making weird faces and/or making silly sounds.  I also think he suppresses his tics to an extent, whether consciously or unconsciously.  In a quiet classroom, for instance, I think he realizes that letting himself tic would draw attention to him and make him look "strange", but in a crowded cafeteria he can let himself go a bit more freely.  I'm able to consciously suppress my own tics in social situations where I feel like I need to (or if it would make someone else uncomfortable or wondering what the hell I was doing), but I definitely don't bother when I'm alone or in a "comfortable" place.  Gerry's tics are incredibly noticeable when he's at home where he feels safe and comfortable.  He doesn't suppress them, he doesn't try to hide them.  And, oh, I know how it good to feels to not hold back.  So, when he comes home from a long day at school and starts going crazy with pent-up energy and noise and movement...I do my best to let him get it out without interference.  Because the relief that comes with "ticking out" around people who you know love you and won't judge you, and doing it in a place where you feel safe enough and comfortable enough to do it?  That's a relief like no other.  

TS Awareness Continues

Continuing with Tourette Syndrome Awareness Month, I posted this on my Facebook page this morning.  

In  Gerry's case, he inherited the condition from me.  Males are also affected 3 to 4 times more than females, so that's two strikes against him right from the get-go.  Back when I was pregnant with him (and, truthfully, right up until he was diagnosed), the thought that I could "pass down" my TS to one or more of my kids had never entered my mind.  I was so used to living with it and my family had never made a big thing of it, that I just never really thought about it.  So much so, that the fact that it can be an inherited condition never occurred to me.  I'm pretty sure his anxiety and OCD tendencies were also passed down from me.

My case is a bit different.  As far as I know, I'm the only one in my family to have it.  Or, at least, to have been formally diagnosed with it.  I don't know the health history on my mom's side, but I'm almost positive that no one on my dad's side has TS.  We spend a lot of time together and in my years I've never noticed anyone ticking or doing anything TS-related.  I have what is called "Sporadic Tourette Syndrome", meaning I didn't inherit it from anyone...there's just a sporadic gene mutation that resulted in my having TS.  Which is kind of neat when you think about it.  

As far as my other kids, I'll be interested to see how it all plays out.  Bailey is almost 10 years old and not displaying any signs or symptoms of TS.  Lincoln just turned 4 and, though I know he's at a higher disadvantage when it comes to inheriting the disorder (being my kid AND a male), he's not showing any signs either at the moment.  It's definitely something I look out for, though, if for no other reason than to make sure I get him the appropriate kinds of help if needed.  

Tourette Syndrome Awareness Month

May 15th to June 15th is Tourette Syndrome Awareness month.  I've been posting a bit on Facebook each day, and thought it might be helpful to post here, too.  This morning, I posted this:

This is Gerry.  I posted last week about starting medication for what the neurologist thinks is ADHD.  He also shows signs of OCD and anxiety.  Still ticking away most days, but those are less worrisome (to me, anyway) than the behavioral/emotional issues.  We're still new to all this, but taking it a day at a time, a tic at a time, a moment at a time.  I don't think we'll ever have a complete handle on TS, either Gerry's or mine, but I'll keep things updated here.  :-)

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.