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.

Tuesday, July 22, 2014

"Tourette Syndrome Isn't For Wimps"

Before I get into my post, I want to apologize for my absence from this blog for the past year.  A number of things have kept me from being able to write.  That will be explained on my other blog, Random Thoughts From A Stay-At-Home Mom.

I want to thank one of my friends for the title of this latest post.  When I saw her post this sentence on Facebook this morning, I knew that it was exactly what needed to be shared today.  This simple quote from my friend explains how I've been feeling the past couple of days.

Last summer, Monster Man and Little Man attended Camp Twitch and Shout.  It was Monster Man's third year, Little Man's first.  The experience was wonderful for both of them, and we felt we were so blessed to have the opportunity to send them to such an incredible place once again.  It was a place where they felt that they could feel like they were just like everyone else, a place where they could feel accepted.

Perhaps the hardest part of sending kids to a Tourette Syndrome camp (or any group setting for those with TS) is that they 'tic shop'.  This is where they pick up new tics from others.  In Monster Man's case, it meant that he came home last summer with three new vocal tics: "Happy, happy, happy", "That's a fact, Jack", and "Yo, my name is Greg!" (his name is not Greg, so we got a kick out of that one).  By about the third day after camp, the new tics had lessened greatly, typical to 'tic shop' fashion.  By the end of the first week home, they had practically disappeared.

The boys attended Camp Twitch and Shout again this summer.  Monster Man's fourth year, Little Man's second.  This time, the new tics that Monster Man picked up were not as easy-going as the vocal tics that he picked up last year.  He instead picked up a punching tic, one where he grunts rather loudly while repeatedly punching.  It's not that he's punching others, but instead that he's punching tables, desks, walls, cabinets... anything hard that helps him feel the sensation his body is looking for.  We're trying to encourage him to punch softer things, like pillows, the couch, or the bed.  While it's helping him to relieve the urge to punch, it isn't fulfilling the sense of pain that his brain seems to be looking for.

Instead of decreasing in frequency and intensity like typical 'tic shop' tics, this one actually seems to be increasing.  I actually had to take him to the doctor today to have his bruised, swollen wrist checked and to have his meds temporarily increased in hopes of helping him to get past this particular phase with his tics.  It is heartbreaking to see him go through all of this pain and frustration, sometimes having tic 'attacks' that last 30 minutes with little break for his body to calm down.  It is exhausting for him, and he is frustrated to know that he can't control this urge to punch right now.

Sadly, this punch tic seems to be fairly common, and it's not the only tic that can end up hurting the ticcer. Some beat their head, their elbows, or their shoulders.  Some kick.  Some bend their bodies in positions that hurt, or forcefully push their bodies into positions that sometimes even cause broken bones.  Some people with TS have pseudo seizures, which look much like a seizure but stop just as quickly as they come on.  Some go into a temporary paralysis, unable to move their bodies as they become limp and just fall to the ground.

Sure there are tics that can make people laugh.  We came to enjoy "Yo, my name is Greg!" in the short time it was in our house.  Some can make people smile, like chirping, blowing kisses, or saying "Happy, happy, happy."  A fellow TS mom recently commented on how big of hearts our TS children have.  They can be such loving children, and they are true blessings.  But it is important to remember that "Tourette Syndrome isn't for wimps".  Our kids really do go through a lot of pain with their experiences.  And that is exactly why we will continue to fight for awareness of what Tourette Syndrome really is.  Our kids shouldn't just feel accepted and 'normal' one week a year.  They should have that acceptance everyday, everywhere.

Friday, June 21, 2013

Symptoms of Tourette Syndrome

I know that Tourette Syndrome Awareness Month is over, but one of my Facebook friends posted this, and it gave such good examples of symptoms of Tourette Syndrome that I knew that I had to share it here with everyone.  It explains many tics (including mental tics, which often go unnoticed as being tics), characteristics, and associated disorders (co-morbids) that can be a part of TS.  As with other examples that I've given in the past, please keep in mind that they are just examples, and that for everyone listed on here, there are many more that are not listed.

Friday, May 31, 2013

Tourette Syndrome Awareness Month: Let's Talk Co-Morbids

I have mentioned co-morbids several times in the past, and I thought it was time to explain more about what co-morbids are and how they affect those with Tourette Syndrome.  Co-morbids are other medical conditions (neurological, psychological, or behavioral) that can appear alongside a main condition, such as Tourette Syndrome.  You might see a person with TS state that they have TS+, a term used to generalize the diagnosis of TS with co-morbids.  Knowing more about co-morbids can help us to gain a better understanding of how much those with TS struggle to overcome just to function on a daily basis.

There are several types of co-morbids that can exist for those with TS.  Below are a few examples.  Please keep in mind that there could be more conditions not described here.

Obsessive-Compulsive Disorder: Intrusive thoughts, ritualized behavior, OCD related anxiety

Anxiety Disorders: Generalized anxiety disorder, panic disorder, and other non-OCD related anxiety

Mood Disorders: Disorders such as bi-polar and depression

Attention Deficit Disorder:  ADD or ADHD

Autism Spectrum Disorders:  Asperger's and other forms of autism

Rage Attacks:  These can also be known as 'meltdowns' or 'storms'

Sensory Disorders:  Sensory Processing Disorder and Sensory Integration Disorder

P.A.N.D.A.S.:  TS+ symptoms that can be related to infections such as strep

Sleep Disorders:  For example, insomnia

Other Learning Disorders:  Dyslexia, dysgraphia, discalculia, and more

Friday, May 24, 2013

Tourette Syndrome Awareness Month: Tics

You're at the grocery store and you notice a lady at the meat counter jerking her head to the side repeatedly.  You're out to eat and hear the child at the table next to you grunting throughout much of the meal.  While at the park, you hear someone yell 'fire' multiple times, despite the fact that there is no fire present. How do you respond?  Do you stop and stare?  Do you go to the people in question and ask if they are alright?  Do you walk away, assuming bad parenting, drug use, or even just the desire for attention are to blame?

Believe it or not, these are all situations that I have encountered in public places - situations that I am lucky enough to understand rather than to have a reaction like those I mentioned above.  For those of us blessed (yes, I did say blessed) enough to have experience with Tourette Syndrome, it's easy to understand that those situations are all examples of tics.  Rather than bring attention to the tics or assuming the worst, we're able to sympathize with the ticcers, understanding that they are struggling with the need to perform these actions, no matter how badly they want to control them.

Tics can come in many forms, motor and vocal, simple and complex.  The possibilities are endless.  Below are a few examples of each type of tic.  As you may notice, some tics can be unclear as to whether they are classified as simple or complex.  Please remember that these are just examples, and that for each example listed, there are many more that are not listed.  It is also important to remember that some children experience tics that show up for a short period of time and then disappear with no explanation, never to experience another tic again (in which case, wouldn't be indicative of a tic disorder such as Tourette Syndrome)

Simple Motor Tics - eye blinking, neck jerking, shoulder shrugging, facial grimaces

Complex Motor Tics - groaning behaviors, facial gestures, biting oneself, smelling things, stomping of feet, jumping

Simple Vocal Tics - throat clearing or coughing, grunting, sniffing, snorting, barking

Complex Vocal Tics - coprolalia (the use of inappropriate words, which is rather rare despite media portrayal of this being common with TS), palilalia (rapid repetition of a word or phrase), echolalia (repetition of words)

Wednesday, May 22, 2013

Some quick facts about Tourette Syndrome

I know I am a few days behind in my posts for Tourette Syndrome Awareness Month, but it is for good reason.  I wanted to share quite a bit of information that I thought would be better in one big post, rather than broken into daily posts.

Tourette Syndrome is not the result of bad parenting.  In fact, it is a neurological disorder which can be hereditary.  Symptoms typically occur before the age of 18, and most commonly start appearing between the ages of 2 and 15.  The most common characterization of Tourette Syndrome is the presence of tics, which are involuntary movements and/or vocalizations that repeatedly occur.  There is usually the presence of multiple tics, both motor and vocal tics, though they do not necessarily happen at the same time.  These can happen multiple times a day every day, or even coming and going over a course of time.  In order for the Tourette diagnosis to be given, the presence of these tics have to have occurred for at least one year.

With Tourette Syndrome, tics tend to follow a wax and wane pattern, meaning that they may suddenly appear, stay for a short period of time (or a long period of time), and then disappear, usually to suddenly return again at a later time.  They can also change in frequency and severity.  New tics can appear to replace old tics.  Tics can also increase in number and severity under certain circumstances, such as periods of high stress or exhaustion.

While tics tend to be involuntary, it is possible to control the tics for a period of time.  For example, some students can hold the tics in during the day at school.  However, when they reach their comfort zone (such as when they arrive at home), they must release the held back tics.  This can often result in outbursts of tics, and can even result in changes in mood.  Often times, holding in tics can also result in inability to concentrate.

It is important to remember that Tourette Syndrome is usually accompanied by a number of co-morbid disorders.  We will get into those in a future post.