Learning about tic disorders the hard way…

(Note: This post was written on another blog in 2013. Some of the information may have changed regarding the diagnosis process. I will work on updating it as soon as possible.)

More than once in my career, I have sat down with a parent, listened as they told their story and recounted that story to the public in an attempt to raise awareness about a situation, disease or disorder. I thought I understood the reasons behind their willingness to tell those stories. I thought I understood what it would be like to be a parent who watches their child struggle on a daily basis. I thought I understood. I was wrong.

Until January of this year, for all intents and purposes, I had a healthy 14-year-old son who was a straight A student and had just found his place in the academic world when he auditioned for and was accepted into the Gallia Academy High School Marching band. Until January, my biggest concern regarding my son was how he was traversing the unsteady world of middle school. My concerns revolved around bullying and drugs and the fact that, before long, he would be old enough to climb behind the wheel of a car.

How quickly that can change.

I first noticed his eye blink and roll in the early fall of 2012.  Because he has struggled with seasonal allergies most of his life, I thought it was dry eyes. It didn’t really bother him. As a matter of fact, he didn’t even seem to notice it.  I gave him allergy medicine and put eye drops in his eyes, with the plan of taking him to the eye doctor if it didn’t get better.  The eye blink and roll would come and go. Some days (usually when his allergies were acting up), it would be worse. Other days, I wouldn’t notice it at all.

And then came the “squeak”.  It was like a throat clearing sound. Again, we chalked it up to allergies and drainage.  It wasn’t the first time he had developed an odd noise while clearing his throat.

The progression was slow at first. The squeak grew a little louder, started happening more frequently.  As parents tend to do, we told him to stop; that if he didn’t stop it would turn into a habit.  We took him to the doctor and as usual, he had a sinus infection and I brought up the squeak, which now sounded more like a dolphin call, to his pediatrician.  We decided, at that point, to do a cat scan of his sinus, as a small cyst was discovered there when he was young, still chalking it up to allergies and drainage.

From that doctor’s appointment through the next few months is honestly a blur.  About a week after that appointment, we found ourselves in the doctor’s office again, but this time, we knew something else was wrong.  His squeak was no longer a squeak, but was now a high-pitched long squeal.  He had no control of it and it was happening every few minutes.

I knew what we were probably dealing with before we made it to that appointment. My sister was the one to first bring up the possibility of Tourette Syndrome. The moment that word was mentioned, I did what I do best….research. It took just one video – one video of a child with eye tic to keep me on the research path.  Video after video after video, I watched kids with TS blink and roll their eyes exactly the same as my son.  It was so distinctive. I read. I watched. I researched. And time after time, I could parallel things with my son. It took less time for his pediatrician to mention TS. It took about the time for him to walk in the door and hear the squeal.

But that didn’t mean it couldn’t be something else, something much worse and we found ourselves thrust into the world of referrals and tests and…waiting. Waiting on appointments. Waiting on test dates. Waiting on results. Waiting on more appointments, test dates and results. Waiting. Waiting. Waiting.

His “squeal” worsened throughout this time.  It began happening more often and harder. His neck would pull to the side, causing pain and headaches. The sheer force of the tic and the sucking in of air would sometimes pull the muscles in his ribs.  It became clear he could no longer attend school, despite his efforts to try to make it work.  Trying to stop the squeal threw him into, what we referred to, as tic attacks.

We were in to Nationwide Children’s within the week after his EEG results appointment for an EEG with video, as his initial EEG had shown an abnormality. At that point, however, we were still looking at months of waiting before he was able to see a neurologist, depending on what the EEG showed.  I don’t know if the neurologist saw the video of him during the EEG and took pity on him or just had an opening, but we got the call shortly after his EEG to schedule an appointment with a neurologist in a month. He was pre-diagnosed with a tic disorder and scheduled for an MRI and his neurologist started trying out medications used to help control tics.

I’m not sure I can fully explain the feeling when I called and found out the MRI results showed nothing that could cause the tics.  The best explanation I can give is, I breathed. I breathed I think for the first time since this all began. Everything pointed to a tic disorder. Nothing pointed to anything worse, but, until those results came back, it still hung in the back of my mind.

On April 30, 2013, my son was officially diagnosed with a tic disorder. An eventual diagnosis of Tourette Syndrome could be possible, however, one of the stipulations at the moment to that diagnosis is the presence of multiple motor and vocal tics for more than a year.  It is a lengthy process.

He finished out his 8th grade year at Gallia Academy Middle School on in-home instruction.  I would like to take a moment to publicly thank the staff at GAMS, who worked with us through all of this.  That experience could have went a totally different way had it not been for their understanding and support of my son. I would also like to thank Dr. Richard Mendieta, who I credit with getting us into Nationwide Children’s Hospital so quickly and Nationwide Children’s Hospital, whose doctors and personnel have been amazing to work with.

A few weeks after beginning the medication, the harshness of his tic began to lessen. His neck no longer jerked to the side. He no longer had attacks and they no longer took his breath away.  He began to try to control them in public, but the effects of not doing the tic were often worse than the tic itself.

The best way I found to explain it is by comparing it to an itch.  Have you ever tried NOT to scratch an itch?  It’s not fun. Normally, that itch will continue to get worse. Eventually it’s all you think about and when you do finally scratch it, you often have to scratch harder and longer.  That is much like what it is like to hold a tic.  The problem with tics is, they wax and wane and stress and illness can make them worse.  It is possible, just finally getting answers and figuring out school, could have had the lessening effect on his tic.  We don’t really know at this point.

Once we knew it wasn’t life threatening, my number one concern was getting him through each day.  It was difficult watching the twinkle disappear from his eyes, to see him hunker down when we left the house because he knew at some point he would get stared at or laughed at or someone he knew would either not talk to him or ask him what was wrong with him.  I will never forget the moment he looked at me and said, “Mom, tell me the truth. Does my tic embarrass you?”  I still tear up thinking about the look on his face when he asked that question. And I found I could answer that question truthfully with a resounding “no”.

I had made up my mind that if he was stuck with the tic, he would still live as normal of a life as possible. I refused to allow him to cocoon himself in the house. I mean, after all, I spent most of my time in public listening to people yap on their cellphones or have screaming kids fly past us in dead runs. I had raised my children to be polite in public, to take into consideration others, to not make spectacles of themselves.  Now he was faced with something he could not control and its effect on others is what bothered him the most. I was faced with undoing 14 years of teaching my children how to behave in society.

I took him everywhere at first – to the stores, to see friends, to certain places I visited for work.  After just a couple of times of my explaining the tic to others, he made the decision that he wanted to be the one to explain. He didn’t like being talked about and he wanted people to know it was okay to talk to him.  And he did.  For the most part, he did really well. Only one incident stands out in my mind and that was more my fault than anyone’s.  The tic and a building that echoes did not mix.

For the most part, however, if people had comments they kept them to themselves. If people stared, they were polite enough to do so after we walked past.  Throughout this, friends and family stepped up and stepped in, all with the goal of helping us help him, of building him up and of making sure he did not feel ashamed of something he couldn’t control.  I’m not saying it wasn’t difficult for him, but he handled it with a grace and determination most adults would not have been able to manage.  And we were there, standing behind him, beside him and in front of him, if needed. We still are.

While he finished out middle school on in-home instruction, he was able to return to band, which helped tremendously.  Despite everything he went through, he managed to walk away from his 8th grade year with straight A’s.

About a month ago, we finally were able to get him into habit reversal training, during which they work with him to create a competing response to his tic in an effort to break the cycle his brain has developed that causes the tic. It doesn’t always work, but thankfully that doesn’t seem to be the case with my son. It is working and working very well, much of which I believe can be attributed to his willingness to do what needs to be done.

Yesterday, we were able to attend a movie at the cinema, something that has not been possible since this began in January.  For the first time in months, he has been able to attend public events without worrying about being stared at or laughed at.  For the first time in months, he smiles easier and the twinkle I had missed so much is back.  For the first time in months, the possibility of his returning to school is an actual possibility.  I also know, tomorrow, he could develop a new tic and this process will start all over again. I also know, for some children and adults, all of the above will never be a possibility.  That some kids with TS or tic disorders will never return to school, may never go to a movie and will still face the stares and laughter. I know there is a good chance my son will face all that all over again, but at least now, we are ready for it.

For me, as a mother, it all came down to one thing. It was not life threatening. Life changing, maybe, but not life threatening.  Whether or not he will continue with tics throughout is life is a “wait and see” game, but I’m not concerned about his future.  He is a bright, talented, polite and confident young man, who just happens to have a tic disorder.

So what is the point of this article?  The same point to every similar article I have written, except for the first time it is written in the first person.

What I learned during this was the rest of the public knows as much about tic disorders and Tourette Syndrome as I did.  My knowledge of TS and tic disorders was limited to things I had seen on television, which usually targeted the rarest of the tics, coprolalia (the involuntary use of obscene words or socially inappropriate words and phrases).

The point of this is really two-fold.  If this article can help just one parent or child, it’s worth it. Had I seen the videos of eye tics prior to January, I would have known we were dealing with something different than allergies. It is that distinctive.  When we realized what was happening, I found myself latching on to anyone who understood.  There are not many local resources for TS or tic disorders.

I also hope to bring light to the subject to make it just a little easier on anyone who has TS or a tic disorder, including my son.  To make people stop a moment before glaring at the kid who is making noises in the store and consider the possibility they may not be able to help it.

This is information I have learned as I completed research. I am not a doctor, just a mother.  In the future, I may interview someone for a more in depth article, but here are the basics and links to more information.

What is a tic?

Tics are brief movements (motor tics) or sounds produced by moving air through the nose, mouth, or throat (vocal tics). In contrast with many other movement disorders, they are not constantly present (except when extremely severe) and occur out of a background of normal motor activity.

Motor tics can be simple or complex in appearance. Simple motor tics are abrupt, sudden, and brief movements, occurring in single and isolated fashion. Examples of simple motor tics include an eye blink, a shoulder shrug, head jerk, dart of the eyes, or twitch of the nose. Complex tics are distinct, coordinated patterns of sequential movements. They may appear purposeful, as if performing a voluntary motor act. Examples of complex tics that appear purposeful include such acts as touching the nose, touching other people, smelling objects, jumping, copropraxia (obscene gestures), and echopraxia (mimicking movements performed by others). Examples of complex tics that appear nonpurposeful include head shaking associated with shoulder shrugging, repetitive kicking of legs, and a sequential display of a variety of facial movements.

Vocal tics represent involuntary sounds produced by moving air through the nose, mouth, or throat. They can also be referred to as phonic tics.

These sounds range from simple throat-clearing sounds and sniffing to grunts to verbalizations of syllables and words. Vocal tics can also be utterances of inappropriate, undesired statements or obscenities (coprolalia). Like somatic motor tics, vocal tics can also be divided into simple and complex tics. Single sounds, such as throat clearing, barking, and sniffing, represent simple vocal tics. Verbalizations (the expression of words), including coprolalia, echolalia (repeating of the words of others), and palilalia (repeating of the individual’s own words) can be considered complex vocal tics.

Tics occur as an involuntary movement or as a response to an urge to perform the movement, which transiently relieves the sensation. The label of “unvoluntary” movement is used to fit this latter situation, ie, the movement is a response to relieve an unpleasant sensation. These “unvoluntary” movements are commonly perceived by the patient as voluntary and, therefore, are often, but not always, partially or fully temporarily suppressible. Unless the disorder is very severe, most individuals with tics can voluntarily suppress them for various periods of time. This is in contrast with other hyperkinetic movement disorders, which can be suppressed for only very short durations, if at all. But when tics are suppressed, an inner tension of discomfort tends to build up, which is relieved only by an increased burst of tics.

My son has both a motor tic (the eye blink and roll) and a vocal tic (the squeal). We witnessed first-hand the effect suppressing his tic has on him. As time progressed, he finally became aware when his tic was coming. (In the beginning they happened randomly and without warning.)  Because of this, he tried to contain the tic in public. It resulted only in a very miserable child who could do nothing but think about the tic he was suppressing, who could not pay attention to anything that was going on around him and who had attacks of the tic when he finally made it to safe place.  The Habit Reversal Training, however, has taught him to use a competing response. His competing response is to suck in air and hold it at the base of his throat over and over until the urge passes.  And it does pass after several minutes.  When he simply tried to hold the tic, the urge just worsened.

(The above information was taken from http://tsa-usa.org/aMedical/definitions.html. For more in depth information, please visit that page.)

What is Tourette Syndrome and what are the basic guidelines for its diagnosis?

Tourette Syndrome is a neurological disorder.

Tourette Syndrome (TS), first described by Gilles de la Tourette, can be the most debilitating tic disorder and is characterized by multiform, frequently changing motor and phonic tics. The current diagnostic criteria, as defined by the Diagnostic and Statistical Manual of Mental Disorders IV are as follows:

1. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.

2. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.

3.  The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.

4. The onset is before age 18.

5. The disturbance is not due to the direct physiological effects of a substance (e.g. stimulants) or a general medical condition (e.g. Huntington’s disease or postviral encephalitis).

It is important to note, there are other forms of tic disorders:

Transient tic disorders often begin during the early school years and can occur in up to 18% of all children. Common tics include eye blinking, nose puckering, grimacing and squinting. Transient vocalizations are less common and include various throat sounds, humming or other noises. Childhood tics may be bizarre – palm licking, poking and/or pinching the genitals are examples. Transient tics last only a few weeks or months and are usually not associated with specific behavioral or school problems. They are especially noticeable during times of heightened excitement or fatigue. As with all tic syndromes, boys are three to four times more often affected than girls. While transient tics by definition do not persist for more than a year, it is not uncommon for a child to have recurrent episodes of transient tics over the course of several years.

Chronic tic disorders are differentiated from transient tic disorders not only by their duration over many years, but by their relatively unchanging character. While transient tics come and go (sniffing may be replaced by forehead furrowing and the furrowing may become finger snapping), chronic tics – such as facial contortions or blinking – may persist unchanged for years.

Chronic multiple tics suggest that an individual has several chronic motor tics (or, in rare cases, several chronic vocal tics). Often it is not an easy task to draw distinctions between transient tics, chronic tics, and chronic multiple tics.

Because there are different forms of tic disorders, diagnosis of my son’s disorder is an ongoing process.

(Information taken from http://tsa-usa.org/aMedical/guidetodiagnosis.html. For more in depth, information, please visit this site.)

If you would like to learn more about tic disorders or Tourette Syndrome, here is a list of links we found helpful.

You can read more in-depth on this hand-out entitled Tic Disorders, including Tourette Syndrome. http://tsa-usa.org/aMedical/images/tourettehandout_berlin.pdf

If you are an educator or work in the school system, please consider watching the video http://tsa-usa.org/ZEdDVD/MainMenu.html.

The video “Getting Started” with Dr. John T. Walkup was very informational.  http://tsa-usa.org/aPeople/diagnosed/newly_diagnosed.html

We also were greatly helped by contacting the Tourette Syndrome Association of Ohio at http://tsaohio.org/

In the end, if you made it through this monster of an article, I appreciate your interest. Or maybe your child has experienced similar symptoms and it has helped in some way.

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Michelle Leigh Miller is an independently published author, freelance writer, and blogger in Southeastern Ohio. Basically, she is just writing words.

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