Part 1: What’s going on?
There were frequent outbursts, inflexibility, unusual worries, and behaviors popping up that were as confusing as they were concerning. How can a child be so stressed at the age of 6? Getting him ready for bed at night was sometimes the hardest…having a 6 year old ask you things like “am I going to die tonight?” was frightening and exhausting. Where was all this coming from…we just didn’t get it.
Then I noticed the noises. The first was a gasping sound. He would take a deep noisy breath as though he was gasping desperately for air. He didn’t really seem to be in any distress, like this was something natural going on. He would gasp like this while eating, and being a nurse my immediate fear was that he was going to aspirate his food. So I would stare at him during meals, replaying the heimlich maneuver over and over again in my head. Then he displayed what looked like fidgeting, and tapping…lots of tapping. At dinner one night we watched him eat a couple of bites of food, then get up out of his seat, walk around the table once, sit back down, eat a few more bites, and then repeat this ritual until dinner was over. I remember looking at my husband and daughter…all of us perplexed by what we just saw. Later I noticed the head rolling, and the “woop-woop-woop” that began during homework, or again at meals. Next was the constant “shh…shh…shh…shh” sounds. He was also chewing on the front neck of his shirt constantly. I had to bring extra shirts with me when we were out because of the ring of a wet mess that accumulated under his chin, and on his shirt.
This was about the time when we sought the help of a therapist. He was identified as having childhood anxiety, and the therapy began. By the age of 7 things just seemed to continue… even with the weekly therapy. We were not ready to consider medicine, so we continued to look for answers, or explanations. I had noticed that school days seemed to be the worst, and asked the therapist if we could have someone observe him during school. He recommended that another psychologist in their office go and watch him for an afternoon. This first observation was to be the beginning of the slew of testing and office visits that would continue for awhile.
After the psychologist’s visit to his school, we met with her to go over the report. It listed a few pages of what she described as simple and complex tics that he exhibited throughout the day, mostly complex tics. This was the first time someone mentioned the word “tic”. She started by telling us that her visit went longer than it was supposed to be because it was fascinating to watch him. In her conclusion, she recommended that we see a pediatric neurologist to evaluate and possibly confirm the diagnosis of Tourette syndrome…I really don’t remember much of the conversation after that. I went home and crawled in to bed for what seemed like weeks, hoping that this wasn’t true – there had to be another explanation. How could my smart, sweet but complicated 7 year old have a disorder that I knew could be socially devastating…that movies make fun of…I know she’s made a mistake…how could we miss something like this?
Now I had more questions, so the frenzy to find the answers began.
Part 2: Learning about TS
In hindsight, what did we really need to know? How could we have avoided some of the stress that we experienced in the years that followed? When you are presented with the possibility of Tourette syndrome, the initial focus almost always becomes the tics. Everyone starts by asking, “what’s a tic”? What does it look like? Is what they are doing a tic or not? Or, how do we stop them? But, for parents I am going to start in another place, because I feel that too many of us get overly focused on fixing the tics. This is not always the part of Tourette syndrome that always needs to be explored first, especially in the early stages. The tics may not need to be fixed right now…or maybe ever.
TS is a complex disorder…it’s best to understand this right from the beginning. There are several factors that may effect how a tic is expressed, and minor tics may not necessarily need treatment…just acceptance. A wonderful comprehensive textbook simply called “Tourette Syndrome” by Drs. Leckman and Martino was recently published in 2013 by Oxford University Press. This is where I have been able to get the most up to date information about TS. Dr. Leckman is widely recognized as a master clinician with special skills in the evaluation and treatment of Tourette’s syndrome (TS) and early onset obsessive-compulsive disorder (OCD). He practices at the Yale School of Medicine’s Child Study Center. Dr. Davide Martino is a Clinical Lecturer at Queen Mary University of London and Consultant Neurologist at the South London NHS Trust. His clinical and research activity is devoted to Tourette syndrome and other movement disorders. There are a lot of wonderful resources on the market also. I’ll be creating a list of resources on the “Resources” page. If you have one that you would like to recommend please let me know.
I like to use the analogy that Tourette syndrome’s tics are like an umbrella that may be covering many other things underneath it. It’s good to understand that tics are influenced by a person’s environments. The “Tourette Syndrome” textbook by Martino and Leckman mentions “internal” and “external” environments. The first is the “internal environment”. What are the possible internal struggles going on with these individuals? Several co-morbid (associated) disorders have been identified that should be explored when approaching the diagnosis and treatment of someone exhibiting symptoms. Possibilities can include anxiety, depression, attention deficit disorder (ADD/ADHD), obsessive compulsive disorder (OCD), social skill deficits, processing problems, and learning difficulties or disabilities. So, it’s good to understand that what’s happening on the “inside” has an effect on their symptoms of TS.
Then there is the influence of the “external environment” on the individual. This is related to relationships and the physical environment that someone with TS is exposed to every day. Parents need to take a look at school, work, activities, home, or just being out in the community. How comfortable and understanding are others when around the person with TS? How much, or what kind of influence do they have on this individual? What other external environmental stressors may be effecting them? Does the child experience success or struggles in school or activities? Do they have a good group of friends, or are they being bullied? What’s happening on the “outside” also has an effect on their symptoms of TS.
Tourette syndrome has a neurobiological component. Neurobiology is defined in the World English Dictionary as “the study of the anatomy, physiology, and biochemistry of the nervous system”. What does this mean? Basically, that there is a genetic and a physical component to TS. Much of the research related to TS involves studying the brain and the nervous system of those effected by the disorder. How their “brain” is wired also has something to do with how their symptoms of TS are expressed.
An area that parents forget to look at is “are there times when the tics seem better”? Are there times when they are not noticeable? What activities or environments seem to put them at ease, or put the tics on hold? For some individuals it will be activities that require concentration. I know of a musician who rarely tics when playing the guitar. My son would rarely tic when intently focused on reading a book. I think playing video games will most likely be a big one on the list. This can be confusing to parents when there are times the tics seem to be minimal, or missing altogether.
To add to this confusion, Tourette syndrome has periods of “waxing” and “waning”. Waxing will be times when tics seem to increase in severity, and waning is when they seem to decrease, or disappear for days, weeks, and even months. Sometimes tics will disappear all together, and new tics appear in their place. Some will disappear and the reemerge again at another time. Another good reason to start looking beyond the tics, and just keep observing and documenting what you are seeing…it’s a lot to absorb.
So before we go ahead and dissect the physical symptoms of TS, let’s make sure we understand that Tourette syndrome is a complex disorder that can look like, and mean different things to each person. As parents, we need to be aware of this when seeking information, and help for our children. In other words, it’s our job to get to know our children better before jumping in to any treatment.
There is a lot of pressure on the parents to get it right. We walk in to the physician or therapist’s office with a young child who is unable to articulate all that might be going on. What we say during these visits may influence what their treatment will be focused on. A good physician who understands TS will know this and ask the right questions to guide you. But, we are still at a point in time where it continues to be difficult for the general medical community to understand all the complexities of TS. I’ll talk about journalling in the next post.
There is a saying…if you want surgery go see a surgeon. Know that the specialist you choose to go to may influence the direction of treatment. A neurologist or internist may be most comfortable dealing with the tics. A psychiatrist or therapist may look primarily at the emotional-behavioral issues. The answer may be incorporating a team of support that will communicate and work with each other when deciding treatment. For now you may become the “case manager” for your child. The medical community is headed in the right direction, and it’s possible to get the proper treatment close to home. Take the time to develop a good relationship with a caring and understanding physician that is willing to help explore the complexities of the diagnosis with you.
The bottom line…there is no one answer or treatment when presented with the symptoms of Tourette syndrome. The approach to treatment can start on the right path by understanding more about what might be going on, and prioritizing your child’s unique issues at the current time. The Tourette’s path is usually a windy road of trying different treatments or medications until you get it right. But hopefully we can smooth it out a bit. Also, be patient…just when you think you’ve got it right…it can change. Tics can increase or decrease over time, and challenges can surface when enough stress is put on an existing weakness that they may have been hiding or compensating for. In the beginning, seek to gain knowledge of the disorder, as well as a good support network of family, friends, and professionals. This will truly be important over time.
Another post soon will look further at the signs and symptoms of the possible co-morbid disorders and their impact on the diagnosis. But, let’s take a quick peek at what a tic looks like, and how a physician diagnoses an individual with a tic disorder, or Tourette syndrome.
Now the “tics”…here is just a quick break down of motor and vocal tics. Motor tics are muscle movements that do not seem to have a purpose. A simple motor tic involves one muscle group and is usually brief, while a complex tic involves more than one group of muscles and lasts longer. Less common motor tics can look like inappropriate gestures called “copropraxia”, or can be expressed as self-injurous behaviors. A simple vocal tic is when a person makes a sound or a noise. A complex vocal tic can be a word, phrase, or inappropriate words. This can be also be heard as someone repeating themselves, or repeating something they have heard – called “echolalia” or “palilalia”. The complex vocal tic that involves inappropriate words is called “coprolalia”. There are also times of tic suppression that can cause a build up of the tics, with a resulting release or explosion of tics when they get home that can last from minutes to hours.
The Diagnostic and Statistical Manual of Mental Disorders (or DSM) is the standard classification system of mental health disorders used by mental health professionals here in the United States ( http://www.psych.org/practice/dsm ). In the DSM-V, the most recent addition, there are guidelines to help differentiate between 3 different tic disorders; Tourette syndrome, chronic motor or vocal tic disorder, and a provisional tic disorder.
But, basically a diagnosis of Tourette must encompass: 1. Both multiple motor and at least one vocal tic which may not happen at the same times. 2. Tics for at least a year, either on and off, in bouts, or every day. 3. Tics begin before the age of 18. 4. The symptoms are not due to other diseases or medicines. Chronic motor or vocal tic disorder involves either vocal tics OR motor tics, and has lasted more than a year. Provisional tic disorder can have motor or vocal tics, or both, and it has lasted less than a year.
The Centers for Disease Control, or CDC, has a great discription of the differences of these disorders on their site at http://www.cdc.gov/ncbddd/tourette/diagnosis.html .
The Tourette Foundation of Canada has a great list of possible tics on their site at: http://www.tourette-london.ca/ae0016.htm