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!