Sometimes Tics Can Be Mistaken

Sometimes, it is easy to explain tics as being other things.  Throat clearing, sniffing, blinking... All easy to mistake as being allergies.  In fact, it's exactly what Monster Man started off with, which is why it took a while for us to realize that he had more going on than just simple allergies and a few 'quirks'.  We were lucky when it came to Little Man because we knew what to look for, and his tics started off a little different.

Angel Baby, our oldest, has had severe allergies since she was a baby.  Environmental allergies, allergies to some foods, allergies to meds, allergies to dyes... She has a rather extensive list.  Her skin has always taken a hit, largely due to her allergies.  Her skin would get itchy, she'd scratch, she'd get sores that would get infected... She has had a series of prescription ointments for her skin for the last several years.  The battle to keep her skin healthy has been a long, stressful one.  It wasn't until recently, when I caught her picking at spots on her arm, only for her to deny doing so, that I began to realize that it was more than just allergies.  Sure enough, after keeping an eye on her (without her realizing it, of course), I discovered that she had a skin-picking tic.

The skin-picking isn't the only tic that was mistaken for something else.  She often rubs her nose, clears her throat, and sniffs, again often figured to be related to her allergies.  When it continued despite the absence of other allergy symptoms, it was easier to realize it wasn't allergy-related after all.

She's always had a dramatic side to her, so it wasn't a huge surprise when she started speaking with random accents.  She has a British accent and an extremely country southern accent, on top of her usual voice.  She'll often be talking in one voice, only to switch to the other mid-sentence.  We'd teased about the voices, calling the British accent Penelope and the country accent Gretchen.  When we realized that just saying the name while she was talking would trigger the accent to change without her even having time to think about making the switch, we realized that the accents, too, were a tic.  In fact, there are times that she actually gets frustrated when she wants to speak normally but one of the accents comes out.  It takes real effort on her part to NOT speak with one of the accents, rather than her having to try to speak with them.

We've known for a while now that we were dealing with TS with her, too, though she has not yet seen the neurologist for an official diagnosis.  We were leaving it up to her, actually, since she is almost 16 and her tics are so mild that they hadn't caused her major frustration (with the exception of the skin-picking, which is finally starting to go away).  She didn't want to get the diagnosis for herself, and we were trying not to think too much of it.

Unfortunately, Angel Baby's tics have gotten much more severe in the past week or two.  She has developed a neck tic that has become quite uncomfortable for her.  Watching her try to finish a meal, her neck jerking as many as 20 times a minute, has become very hard on us.  She has had such a huge change that it has come to the point that we know she'll have to go to the neurologist for an official diagnosis soon, and that we'll have to find the right treatment for her since she is dealing with a lot of neck pain as a result of this tic.

No more mistaking the tics as something else in this house.  It's time for us all to finally accept that all three of our kids are dealing with their own struggles with TS.

TS and Bullying

It's sad to know just how many kids with Tourette Syndrome deal with bullying on a daily basis.  Most of the time, it comes in the form of verbal bullying - nasty comments, name calling, and other verbal attacks that the ticcer faces, most often due to ignorance about the disability.  Even worse are the physical attacks that those with TS (and other disabilities) can also face.

I take part in several different online communities for families affected by Tourette Syndrome.  This morning, I found a post from a parent about the recent bullying her son had experienced.  In fact, the bullying is so bad that he has experienced 8 (yes EIGHT!!) physical assaults in one year.  Most recently, he was left with a moderate to severe concussion that will have him out of school, on homebound education, for the month of January while he recovers.  Of course, the recovery will only be physically.  The emotional scars will remain with him for much, much longer.

To make matters worse, he has been punished for his disability by teachers who lack the understanding of his disability, and by a school that falsely believes that the issues he faces as a result of his Tourette Syndrome are behavioral, rather than the result of his neurological disorder.

I invite you to take a stand against bullying, both from peers and from educators, especially in the case of this poor young boy.  Please read the post that was written by his father at https://exceptionaldelaware.wordpress.com/2014/12/31/the-last-post-of-2014-will-be-a-huge-part-of-2015/ and has already been making its way through social media, being shared in hopes of helping bring much-needed change to his school district.

I hope and pray that this young boy can finally find peace within his school, that he can finally have the chance to have the normal school experience that he deserves.

A Letter That Needs To Be Read

One of my Facebook friends that also has children with Tourette Syndrome shared a post this morning that I felt was so important that it not only needed to be shared on my Facebook page, but also needed to be shared here on my blog, as well.  This post was a letter written by Richard Paul Evans, author of the Michael Vey series of books.  That letter, titled 'To the woman at church who sent me an anonymous letter', was one that brought tears to my eyes.  (Please use the link in the letter title to view the letter itself.)

Richard Paul Evans had visited a church to share the Word with those within the church.  During his visit, his tics had been quite apparent.  One of the ladies within the church took those tics as being punishment from God for Mr. Evans' sins.  We are all sinners, which is why God sent His son into the world to die for our sins - to give us forgiveness for those sins.  He does not punish us for our sins by giving us tics or other neurological conditions.

The very idea that people still believe neurological conditions can be the result of our sins is one that angers me.  Putting this idea in the heads of those who suffer from tics, seizures, etc can be damaging in so many ways.  As if knowing they are different isn't hard enough on those with these conditions, they often times deal with bullying, staring, and countless questions.  Suggesting that they are being punished for their sins is even more damaging, Those that are more prone to believing this, rather than accepting the truth that it's caused by neurological disorders, will only suffer more from their desire to be more perfect in hopes that the tics will go away.

I think that Richard Paul Evans had the perfect response to this letter.  He, like me, hurts for all of those who could fall victim to these false accusations.  I can only hope and pray that his letter has found its way to the writer of the original anonymous letter, opening her heart to the truth about the author and others with neurological disorders.  In the mean time, I pray that it has also found its way to others with similar beliefs, helping them to gain better understanding of what Tourette Syndrome really is.

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!

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.

"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.

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.