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!

"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.

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

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)

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.

Early signs of Tourette Syndrome

I often get asked how early on that I started seeing signs of Tourette Syndrome in Monster Man.  I always knew that he was a little 'different', but didn't quite know what was making him different until he was older.  Somewhere around the end of first, we do know that he started having some problems that we associated with allergies.  For a long time, we didn't realize that they could be anything else other than allergies, which he'd struggled with since he was a toddler.  For that reason, we're not really sure when the TS symptoms started and how many of his symptoms were TS related rather than allergy related.

It's with good reason that we so were so easily able to mistake signs of TS as being allergies.  Tics of the eye are often among the first motor tics, and the most common one is eye blinking.  Tics of the head and fact are often very common early motor tics.  Early vocal tics often include throat clearing and sniffing.  Monster Man had the eye blinking, throat clearing, and sniffing long before he had any other tics... all very common allergy symptoms.

There are also many complex motor tics that can be common closer to the onset of Tourettes symptoms.  These can include touching, thrusting of the arms and legs, and jumping.

It's important to remember that no two cases of Tourette Syndrome are exactly the same.  What can be early symptoms in some people may not show up at all in others.  Two people may share one or two of the same tics, but have a much larger list of tics that they don't have in common.  It's also important to realize that these early signs are just the most common, and that some people experience different tics than those listed early on.

It's That Time Again

It's that time of the year again.  Today officially marks the start of Tourette Syndrome Awareness Month, which runs from May 15 to June 15.  In the days to come, I will once again be sharing facts about Tourette Syndrome.  Please feel free to share my posts to help spread awareness of what TS really is.

To start us off for the month, here is the first fact:  Tourette Syndrome is not a swearing disease, as media often portrays it to be. It is a neurological disorder characterized by motor and vocal tics.  Coprolalia (the swearing often associated with TS) occurs in only about 10% of those with Tourette Syndrome.

Spin For Kids

I know I have mentioned Camp Twitch and Shout several times in other posts, but if you aren't sure what Camp Twitch and Shout is, it's a wonderful camp experience for children with Tourette Syndrome. It's a place where my Monster Man (and now my Little Man, as well) can connect with other kids that have TS, getting a chance to feel 'normal' for a week. While I don't think that everyone should always be the same, I recognize the value of having a place where they don't feel so out of place, so alone with their daily struggles. For Monster Man, Camp Twitch and Shout has been a little slice of heaven on earth.
Camp Twitch and Shout is a camp partner of Camp Twin Lakes, a wonderful organization that offers camping experiences for children and families going through so many struggles - medically, emotionally, and more! Camp Twin Lakes depends on donations to make these great camps possible.

This October, I am heading up the Camp Twitch and Shout team for a Camp Twin Lakes fundraiser, Spin For Kids. Our team goal is to reach $5000 in donations, and I am hoping to have somewhere around 20 riders on our team. Please join us in reaching our goal. If you live in Georgia, please consider joining the Camp Twitch and Shout team. If you are unable to join the team, please consider making a donation to sponsor a rider and help our team reach (or possibly surpass!) it's goal.  You don't have to make a decision right away, as the ride isn't until October 20, but our team would appreciate you taking a moment to consider riding or sponsoring.  Thank you in advance!
 
Click Here to Donate

EEGs for both the boys

I had to take both Monster Man and Little Man to the neurologist last month. It was time for Monster Man to be seen again, and it was at that same time that I took Little Man in to get his diagnosis, as well as to be seen for migraines. In addition to the TS and migraines, I had another concern that I had needed to discuss with the neurologist. For some time now, Monster Man has had a problem where he would quit talking mid-sentence, spacing out and completely forgetting that he was even talking. I was told by several people in a TS group I am part of that it could be TS related, but that it sounded more like absence seizures (petit mal seizures). In recent months, it had been brought to my attention that Little Man was also having spells where he would 'space out' and seem like he wasn't quite there. Given the fact that there is a close family history of epilepsy, it was a bit concerning to us. I mentioned this to the neurologist while we were at their appointment, and he scheduled both boys for EEGs the following week. After a long night of keeping them up until midnight and then waking them up at 5am (they were only allowed 5 hours of sleep prior to the testing so that they would be sleep deprived), Georgia Boy and I took them to have the EEGs performed. In our paperwork, we were told that the results would be ready through our physician in 7 to 10 business days, so we expected a long wait before finding out the results. Instead, the neurologist called us that afternoon with the results. Sure enough, both of the boys have been having absence seizures. The boys are now both adjusting to taking seizure medications, a transition that has been a little easier for Monster Man (who is used to taking medication for the TS; Little Man does not require medication for his TS at this time) than for Little Man. I think Little Man is finally adjusting, though, and we're already seeing a huge improvement in the amount of seizures we were previously seeing.

Please Check Out This Video

Camp Twitch and Shout - The Movie from Emmett Williams on Vimeo.

Monster Man has been telling me for quite some time now that there is a video available called 'Camp Twitch and Shout: The Movie'. He couldn't find it on YouTube, and he wasn't sure where to find it, but he knew that it existed. He has been wanting to see it ever since he first found out about it. This morning, I found the link to the video posted in a recent post on the Camp Twitch and Shout Facebook Page. The video, which is about 30 minutes long, is so much more than I expected it to be! I knew that it would explain about camp, and about how camp benefits the campers. What I didn't expect was that it would be an incredible source of information for educating others about Tourette Syndrome. Please watch the video and share it. Let's help spread awareness!

Not one, but two

I know I haven't posted here very much recently.  There has been a lot going on that has kept me from posting, but I've also kind of avoided posting anything until I could give some information that I didn't want to post until I knew for sure.

I'm pretty sure that I've mentioned before that Tourette syndrome can be hereditary.  While there are cases where it seems to come out of nowhere, more often than not there is usually someone in the family (somewhere along the lines) that has had TS or at least tics.  It's also not uncommon to find out when one of your children has TS that a sibling has tics or TS.

That has ended up being the case in our home.  Our seven-year-old son, Little Man, was diagnosed with Tourette Syndrome this morning.  And so our journey begins of raising not one, but two children with TS.

It's been a while

I know that it has been a while since I've updated here.  The truth is, there hasn't been a whole lot to report.  When it comes to a child with TS, that's definitely a good thing!

Monster Man started taking Clonidine over the summer.  When he first started taking it, he had a few side effects that were a little bothersome.  We almost took him off of it, but decided to give it a few more days since the side effects, while a little worrisome, only happened a couple of times.  Sure enough, once his body adjusted to the medication, the side effects went away.

When we first put Monster Man on Clonidine, our biggest concern was the rage issues he was having.  The neurologist told us that the Clonidine wouldn't help with the rage itself, but that it could possibly be improved by helping him control his tics.  At the time, his rage had gotten so severe that he had gone from having a single rage episode, lasting about an hour, every few weeks - or even months - to having as many as 12 a week, lasting anywhere from 45 minutes to 2 hours. 

Interestingly, the rage improved drastically, but the tics seemed to explode!  In the six months that Monster Man has been on Clonidine, he's only had two rage episodes, and both were only about 30 minutes in length.  And if he accidentally forgets to take his medicine (for example, if he spent the night at a friend's house and failed to take it), we can tell the next day because his behavior is so different.  On the other hand, he went from ticcing only a few times each hour to ticcing almost non-stop!  He suddenly had to have his fingers to his mouth constantly.  If he wasn't chewing the skin around his fingernails (which I previously mentioned), he was twisting the tip of his tongue with the tips of his fingers.  He also added a tic similar to blowing a raspberry, but it sounds similar to a horse (my hubby calls it the horse tic), which he had to do multiple times in an hour... Sometimes it seemed he'd only move his fingers from his mouth to do the horse tic before returning his fingers to his mouth once more.

He has learned to control his tics somewhat in certain situations.  He doesn't seem to do the horse tic very often at church, and I've been told he rarely does it at school either, but he has to release it all when he gets home, sometimes blowing raspberries for two or three minutes straight.  The fingers to the mouth thing, though, seems to be pretty much a constant.  I've even seen him twisting his tongue on the ball field in between pitches while at bat!  It can be really interesting at meals, when I've seen him pick up tiny pieces of food (sometimes even single grains of rice), roll them into even tinier pieces, and then roll the food along the tip of his tongue with his fingers, rather than twisting the tip of his tongue.

About two weeks ago, the doctor increased his dosage of Clonidine in hopes that it will help control the tics as well as it has been controlling the rage.  So far, we've noticed a good improvement.  His fingers aren't going to his mouth as often as they were, though he does still do this fairly often, and the horse tic doesn't seem to be present so much either.  We're seeing a much happier Monster Man than we've seen in a very long time, though he still has his moments (but what twelve-year-old boy doesn't?).  It's so nice to see him happy again!

Dermatophagia and Trichophagia

 One of the things that Monster Man has been dealing with for a very long time (since well before his diagnosis) is biting his own fingers.  It started out with nail-biting and progressed into chewing on the skin around his nails. I cannot remember the last time that I actually had to clip Monster Man's fingernails because he's bit them down so short for so long.  

At first, we didn't realize that this was in any way, shape, or form related to Tourette Syndrome.  A few months after his diagnosis, I started noticing that other parents were talking about how they fight the chewing by using things such as chewelry (jewelry that can be chewed on).  With all the posts I was seeing online in the Tourettes groups that I am on, I came to realize that chewing of skin (whether it be on the fingers, the toes, or wherever), as well as the chewing of hair, is very common in the TS world.

I finally discovered today that there are actually names for the chewing of skin and hair.  Those that chew on their skin most likely suffer from dermatophagia, while those that chew on their hair most likely suffer from trichophagia.  Both conditions are not part of Tourette Syndrome itself, but are actually part of a TS comorbid... Obsessive Compulsive Disorder.  

In my reading on dermatophagia, I came to realize that it is something I've always struggled with myself.  I have always chewed the inside of my mouth, often leaving sores on the inside of my cheek and on the inside of my lip.  As a kid, I tried to control it either by chewing on pencils or chewing gum.  I ended up with TMJ in middle school, and I had to cut back on the gum chewing.  I've been chewing the inside of my mouth off and on ever since.

I still haven't found something to help Monster Man compensate for the need to chew his fingers.  We've tried multiple times, unsuccessfully, to at least limit how much he chews on his fingers. He often chews on them until they bleed or scab, and we're concerned about the possibility of infection if he doesn't start controlling how much he chews.  We're hoping something will come to us soon, but at least we know now what we're really dealing with. 

I don't see it...

There is one comment that seems to be heard by just about every single one of us that has a child with TS.  At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it".  While the words may be quite harmless, there are other times when the words can end up being more hurtful.  Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.

I think there are a number of factors that can come into play as to whether or not someone "sees it."  Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control).  Another factor can be whether or not the child is comfortable around the person that doesn't see it.  Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone.  There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.

Mothers, on the other hand, are often more tuned in to the things that affect our children.  We have a sense when something is wrong, when there is something more than just habitual behaviors going on.  We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them.  Just because you don't see it doesn't mean that we don't see it.  When we do come to that realization, when we accept that our children are different, we need the support of those around us.  We don't want to hear the doubts cast our way.  We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support.  Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.

Adjustment Period

Monster Man has been going through a bit of an adjustment period.  About three weeks ago, he started taking Clonidine to help control some of his tics.  The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage.  We were told that it would take over two weeks before we start seeing results.  So far, we're not sure if the results we're seeing are an improvement or not.  Some of his tics have seemed to decrease, but others seem to have increased.  He also seems a little more 'jumpy'.  His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.

This past Saturday, we left for a camping trip to the mountains.  Sometimes, he seemed much better than he previously would have.  In the past, he's been very nervous going over the mountain roads, afraid he'd fall off.  He didn't seem to have those fears this time.  However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic.  He had gotten upset because he was ticcing a little and noticed someone was watching him.  The stress from being stared at caused him to start ticcing 100 times worse.  I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL).  A few minutes later, he was happily drawing again.  Seeing him struggle like that was so hard on both me and my husband.

We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening.  We're also keeping our eye out for signs of improvement.  We're really hoping that this medication will help improve Monster Man's symptoms.  He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.

No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!