Tics and Tourette Syndrome: Our Journey

 

My daughter, Tatiana, requested this post in honor of Tourette Syndrome awareness month.  It is an updated post first published in a parent blog I did in 2013.

 

The first time I noticed Tatiana’s tics was one day while she was watching television.  She was only 18 months old and didn’t talk yet.  She would open her mouth really wide and squint her eyes, almost like she was yawning, but much bigger and very sudden...like jerking.  She would do this once every few minutes at times and other times she did it over and over again every 2 to 3 seconds for what seemed like an eternity to me.  I couldn’t watch.  Even though it didn’t seem to bother her at all, the repetitive movements drove me to tears.  I was obsessed with these tics.  I looked for them with vigilance, but then hated seeing them once they appeared.  I would count them, time how long they lasted, and even record them with a video camera to show to her pediatrician.  I searched the Internet for answers, feeling more overwhelmed the more I read.  Her pediatrician didn’t seem too concerned and said not to worry unless she had them for more than a year.  A year?  I thought I would die if I saw her with these tics for that long. 

 

Her tics progressed to also involve her eyes, her tongue, and her nose.  She had tics that would go in a certain order:  open the mouth, tongue sweep over the top lip, and the nose crinkle.  She sometimes barked or said the same nonsense word over and over again when she finally began to speak.  She would chew on books and eventually eat pieces of the pages.  She had drooling/spitting tics that were a combination of embarrassing and infuriating for me to watch.  She bit her nails incessantly.  All the while, she wasn’t bothered. She also had night terrors.  The first one she had was so frightening I was sure that someone had broken into the house and done something terrible to her.  I searched high and low for the criminal that had come into her room and caused her to scream and thrash so hard that I felt like I was in a nightmare of my own, but there was no one else there. More night terrors soon followed: eyes open, but not awake.  She didn’t remember them, but I couldn’t forget them. 

 

The year went by and then more years and the tics changed, evolved, and continued.  Tatiana was diagnosed with Autism Spectrum disorder and Tourette Syndrome in the same year, at age 4.  Her pediatric neurologist said that she didn’t treat tics unless they became dangerous or extremely intrusive and instead encouraged us to learn as much as we could about TS and join a support group.  We did both. The Tourette Association of America provided us with a great number of resources, including ones specific for children to watch and read.  It also offered many opportunities to get together with other families affected by TS.  Since then, Tatiana has participated in a research study for TS on genetic links and has now run in two 5K races on Team Tourette at the Disney World Marathon event weekend each January.  We will be running as a family in the 5K once again in January of 2016, hoping to raise money towards TS awareness and research, as well as connect with others on this journey.  We also attended a TS family weekend and camped with other families living with TS.  There we attended educational, as well as networking sessions, and learned from experts and each other.

 

Tatiana’s favorite part of any TS event is being with other kids with TS.  I enjoy seeing how free and confident she is with other TS kids.  In fact, she is so relaxed and happy that her tics seem to go away at these events, only to return again when we leave the comfortable oasis of an orchestra of sounds and variety of sudden movements that add ambience to what might otherwise be a typical and blah gathering of people.  I do have to add that we have never heard a blurted curse word at any of these TS events, so sorry to disappoint the readers who are picturing a room full of people yelling bad words or other insults at each other.  Not to say that the blurting of obscenities does not happen in TS, but to say that it is uncommon, unlike what media and social circles might portray.  This is why I believe that many people with TS go undiagnosed....parents may not realize that the eye rolling, sniffing, throat clearing, and shoulder shrugging their child does are tics because they are expecting something more severe and inappropriate.  There are also some adults with TS that may not realize that they have it.  TS is important to diagnose because it is almost always accompanied by other comorbidities, such as ADHD, OCD, anxiety disorder, sleep issues, and behavioral or learning issues.  There are various behavioral and pharmacological treatments available that can help reduce tics, as well as improve other issues the child may have.  It is something that parents, doctors, and teachers need to be more aware of in order to help these children to be successful academically and socially.

 

Tatiana’s tics are usually not noticeable by others, unless you are around her often or when she goes through a more severe wave of tics.  They typically get worse when she is hungry, tired, or stressed.  She now notices her tics and can tell when something she is doing is a tic or not.  She has tics that bother her and she has tics she likes.  She tries to hold in certain tics that are more disruptive or hurt her, like her neck tic, and she is able to control her tics to some degree during certain activities.  Other times, she just lets them flow and tics a whole bunch in a safe place where no one can see her.  We talk about TS because it is important for her to know that it is a part of her, but does not define or limit her.  Tics can worsen or improve through cycles and usually worsens and peaks in puberty, so I have to make sure that Tatiana knows as much as possible about TS and is prepared for any questions, comments, or teasing that could come her way.  Our family has learned a lot along the way, not just about TS, but about life and people. 

 

Tatiana is now 9 years old and will be going into the 4th grade.  She did the 3rd grade at home in a virtual environment, in part due to the social stress of her autism spectrum worsening her tics in the 2nd grade enough that we wanted to give her a break to be able to learn in a stress-free environment for a year.  She is ready to head back to school in a few months, armed with stress-reducing techniques and with more confidence and knowledge about TS in order to discuss with others as necessary.  I am more nervous about her going back to school than she is, but I know that she is strong and will overcome any obstacles.  Tatiana plays the piano, is on a swim team, plays soccer, acts in plays and musicals, and will try virtually anything.  She is an excellent writer and artist and enjoys making PowerPoint presentations in her spare time!  As those in TS circles say:  Tatiana may have tics, but tics do not have her!

 

Now as I watch Tatiana, I barely notice the tics that used to bring me to tears-I see a wonderful, adventurous, and curious spirit that sees no limits to what she can do.  I don’t even wish for her tics to go away anymore because they are a part of a perfect package...a package that for me has taught me to never give up and to embrace the journey.

 

To find out more about TS, visit the national Tourette Association of America website at http://tsa-usa.org/

  

 

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