Tourette Syndrome, the facts

May 15th through June 15th is Tourette Syndrome Awareness Month.

My family has been greatly affected by Tourette Syndrome.  My son has tourette syndrome and every day that he has tics is a struggle.  Dealing with the disorder is one thing that is hard.  Even more complicated is explaining his behaviour to those who may have seen him have a bout of tics.  The stress all of this while he is going to school and trying to have a “normal” life is exhausting.

On a daily basis I scour the internet for research news or new treatment methods for Tourette Syndrome.  I do this for a number of illnesses, and it has become apparent to me, based on the insignificant amount of research activity, that more people need to become familiar with the disorder.  Once their awareness is raised, hopefully they will join the cause and push for more research to find a cure.  May 15th – June 15th is Tourette Syndrome Awareness Month.  Watch for updates on this blog during the awareness month.  Take a moment and join the cause.

Take a look at the facts about Tourette Syndrome:

• Boys and men show the symptoms of TS more frequently than girls and women. The ratio is about 4:1.   
• There can be other conditions associated with TS, in particular OCD, ADHD, and Sensory Processing Disorder   
• TS is a tic disorder. It is a neurological condition. It is not emotional in origin but it may have psychological consequences and effects.   
• A tic is an involuntary movement (motor tic) or sound (vocal tic). Tics can be ‘invisible’ – intrusive thoughts or compulsive behaviours.   
• Movements may vary from minor (eye blinking) to severe (complex movements of the whole body).   
• Sounds may vary, from throat clearing to whole phrases.   
• Phrases can be repeated, from whole words to parts of sentences (Echolalia)   
• Although the movements are involuntary, the person may be able to control them at times, although this takes a lot of concentration.   
• People can ‘suppress’ the tics for a period of time, but they will always need to tic when they feel safe to do so.   
• A child may control or suppress tics at school; however they may then tic constantly for a while as soon as they get home.    
• A teacher wont realise a child has tics if they ‘suppress’, but it also means that the child will not be concentrating on school work.   
• A child may only release the tics in the privacy of their own room, so that others, even parents, aren’t aware of their existence.   
• Early multi-diagnosis, positive intervention, medication/alternative therapies may help someone living with TS.   
• Someone living with TS – what may help – understanding from family, friends and public.   
• Someone living with TS – what may help – understanding from Health, Education, Social Work, Employer.   
• Someone living with TS – what may help – regular breaks/support for parents/care providers/siblings.   
• Someone living with TS – what may help – contact with others through Tourette Sydrome Association  
• TS, which was once thought to be extremely rare, is in fact one of the most common genetic diseases affecting man and many people have it.   
• Tics range from mild to severe and can change over time, ‘wax and wane’ so they don’t stay the same for life.   
• People with TS are often of high intelligence, and are often creative or artistic.   
• TS is genetic and can run in families, which may also include someone with Asperger’s or OCD, ADHD or similar conditions.   
• Teachers can assist to make a positive learning experience for a student with TS, by creating a supportive environment in the classroom   
• Awareness raising should include the personal experience of those with TS, which is helpful in explaining the varied aspects of the condition to others and in gaining empathy.    
• Use of methods such as ‘Time Out’ and working with the student on their individual learning plans.   
• The use of management tools, can assist the teacher and the student in smoothing the way for productive learning relationships.   
•  More understanding, in that the condition has many facets, should be sought and teachers be made aware  of the particular traits and challenges facing the individuals in their care.

Information from the Tourette Syndrome Association.

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Tourette Syndrome, school, and despair . . .

This is a continuation of a post called  The onset of Tourette Syndrome and my son . . ..

In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD.  Below is a continuation of some basic information about Tourette Syndrome and a description of our experience with it.

Some tics are preceded by an urge or sensation in the affected muscle group. Some people with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge to tic  or to decrease the sensation.

Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics.  For example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished. 

Tics come and go over time, varying in type, frequency, location, and severity.  Motor tics generally precede the development of vocal tics and simple tics often precede complex tics.

Although the symptoms of TS are involuntary, some people can sometimes suppress their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed.

After my son returned to school it was obvious that the events were triggered by anxiety.  In school they were doing “rocket math”  which were sets of timed tests to see how many addition and subtraction problems they could get done in one minute.  The students each had a goal that they needed to accomplish, based on their specific writing speed, before they could go on to the next set.  While my son worked with the tutor  (which coincidently was his teacher) and I was observing, I noticed that just bringing out the green paper, which was used for these rocket math tests, would trigger a round of complex tics.  I also noticed that his teacher exuded anxiety with her voice and how she interacted with my son.  I could then see why he was having so much anxiety at school.

To help my son deal with his anxiety we worked with a specialist to identify coping skills that he could use.  We also met with an integrated health doctor who was an expert of using vitamin and mineral supplements to treat Tourette Syndrome.  In addition the integrated health clinic taught him biofeedback techniques.  To be honest some of these things worked for a while, and eventually were not effective.  The best techniques we found was distraction or music.  When my son was going through a round of complex tics I could hand him a full glass of water and the tics subsided.  It is as if the brain knew it had to carefully hold the glass of water to avoid spilling the water.  For a brief time it would stop the tics.  Overtime we also found that change of venue and music were the best items to use to reduce the duration of the complex tics.  My son carries his iPod with him every day in case he needs it.  Typically he has to use the iPod every day because his tics happened everyday.

In certain circumstances, such as public places, my son tries to suppress his tics, which is really hard to do and sometimes he is not successful of suppressing them.  He also tells me that if he suppresses the tics eventually they have to happen, and when they do the intensity of them is increased. 

Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells.  The genes associated with Tourette Syndrome have not been identified and there is no potential cure at this time.

Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsivity (attention deficit hyperactivity disorder—ADHD) and related problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors.  In addition, people with TS have also reported problems with depression or anxiety disorders. 

There is no cure for Tourette’s and no medication that works universally for all individuals without significant adverse effects.  The management of the symptoms of Tourette’s may include pharmacological, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, other treatments (such as supportive psychotherapy or cognitive behavioral therapy may help to avoid depression and social isolation, and to improve family support. Educating a patient, family, and surrounding community (such as friends, school, and church) is a key treatment strategy, and may be all that is required in mild cases.

 A study of 46 subjects at 19 years of age found that the symptoms of 80% had minimum to mild impact on their overall functioning, and that the other 20% experienced at least a moderate impact on their overall functioning.^[1] The rare minority of severe cases can inhibit or prevent individuals from holding a job or having a fulfilling social life. In a follow-up study of thirty-one adults with Tourette’s, all patients completed high school, 52% finished at least two years of college, and 71% were full-time employed or were pursuing higher education.

My son is now in the sixth grade.  There has not been a day that he has not had tics.  Sometimes they are simply and sometimes more complex.  Over a period of time they change slightly.  He still has erratic body jerks and occasionally will include the loud vocalizations.  About a two years ago we tried clonidine (also known ass catapres, which is a blood pressure medication), which had no affect on the tics, but did have side effects, such as lethargy.  We ceased used it after about six months. 

Recently, a new tic appeared where he either slaps himself in the face or punches himself.  The situation is dire.  My son has continued working with a neuropsychologist on coping skills and reduction of anxiety.  We really have not had much success with this.  The concept of doing things to prevent the tics from starting has not really been understood by my son.  He is always looking for a solution to use as the tics are happening.  Perhaps as he gets older the preventive tools may make more sense.

Dealing with the medical community is very frustrating.  For many centuries TS was considered to be a psychogenic disorder.  Now with more information, there is recognition of it being a neurological disorder.  Yet there is still a belief that behavioral therapy can improve the situation.  I find this concept idiotic.  If you have spent some time with a person who has Tourette Syndrome,  you would understand it is not behavioral and truly is involuntary.  I guess the behavioral approach is to address the triggers that may cause tics to occur.  Our neurologist, who is an excellent epilepsy doctor, has no expertise with TS, or at least does not feel comfortable treating it. Our psychotherapist has suggested that we work with someone to try some of the other medications that are available.  So we are in the process of finding a specialist to work with my son.  So far, no luck. 

School has been a complete nightmare since this all started.  Over the last three years he has increasing fallen further and further behind in school.  The nature of his learning disabilities have become more apparent.  I have also noticed that the type of teacher also has a huge impact. 

I have had numerous discussion with teachers or the principal or the nurse, about the events being involuntary and not purposeful.  They repeatedly kept saying, it appears he does this whenever there is work to be done.  I told them perhaps the anxiety of the work was triggering them, and I pointed out the events do not always happen during school or while he is working on school assignments.  They also happen on the playground.   They happened while he plays video games.  They have happened right before falling asleep.  The principal of the grade school and I got into many, many heated discussion. I just wouldn’t give up.

In fourth grade he was assigned to a special education teacher.  that lasted half a year, and she kind of threw up her hands, and complained that he could not follow directions or could not identify, by looking at the other kids in the room, what he should be doing.  Now, she is a special education teacher!  If anyone should know how to deal with this it should be her.  In  fifth grade they assigned my son to an individual, who originally was classified as a social worker, and suspiciously became his fulltime teacher for math, reading and language.  This relationship went from good to terrible.  Some of the things she did was unforgivable.  She would punish him for having tics.  She complained he was not getting his work done.  She demanded that he continue working while he was having tics.  She would not give him privacy when he was have complex and never-ending events.  She was quite a  *itch (I apologize for the language, but if there ever was a time to use that word, this is the time).   By the time we hit fifth grade I begged my son to hang in there, because after that year we would be in a new school with different people, which should change the situation.  At one point I did not think we were going to get through fifth grade.

 

Someone must have been looking out for us, because this year in sixth grade, the situation is completely different.  My son’s teacher has worked with kids with Tourette Syndrome before.  The school in general is trying to accommodate him at the same time that he is getting educated.  He is in a class with kids with learning disabilities, and I think from a progress level he is ahead of most, if not all of the students.  As a result of this, his self-image has improved.  The biggest change is that the staff has empathy for the situation.  My son now LOVES school, loves his teacher and is making tremendous progress.   Next week is our IEP meeting.  We will see how it goes.

 

 

* The majority of the facts in this blog were gathered from a variety of sources including the Tourette Syndrome Association

.^[1]Leckman JF, Bloch MH, King RA, Scahill L. “Phenomenology of tics and natural history of tic disorders”. Adv Neurol. 2006;99:1–16. PMID 16536348

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The onset of Tourette Syndrome and my son

My son and a different path . . .

If you have been following my blog you may know that me and my family lived in Ohio and I was working as an independent technology consultant.  The work at the bank was going really well.  I was slowly getting the management team to take responsibility for using the new application in a way that it was meant to be used.  If they continued in this manner, the bank would reduce their expenses which was the original purpose of the application.

By this time my son was 3 1/2 years old.  During week days he was in day care, even though I was reluctant to do so. He was a typical healthy little boy who goes through some typical illnesses. When he was really young he had quite a few ear infections and we ended up putting tubes in his ears.

Around that same time a doctor said he heard a heart murmur, which was a little scary. After the tests it was determined it was not a hole in the heart. What the doctor heard was probably due to thin walls between the chambers.

It was a Sunday evening when our lives extremely diverged down a different path. It was just me and my son together at the time. My husband had recently went on  a business trip to West Africa.

Up to this time I was enjoying being a mom. My son was the delight of my life. I was gracious to have him in my life. He really was my little miracle baby. I was enthralled with watching his development and achievements. I know this sounds odd, but it was fascinating to watch him evolve from a infant to an independent little boy. He was energetic, a quick learner, and joyful with the life that was given him. As a mom, the experience could not be any better.

That March Sunday evening we had just finished eating and I was washing clothes. I was getting things organized for the coming week. Our laundry area was in a room adjacent to the kitchen. Just off to the side at  the entry way to the kitchen was our computer.

The day before this Sunday, my son had discovered a new hobby which was the beginning of him loving games. I had introduced him to the world of computers at a very young age. Even when he was a pre-toddler I had a software application that a baby could play with. Touching any key on the keyboard caused a visual and audible response. This way a young child could interact with it and not need any knowledge of how to use a keyboard or a mouse or even what a computer was.

It was on that Saturday that my son realized that there was a whole new way of having fun. Throughout that day, he obsessively played games on the computer. It was hard to get him to stop and eat. Then on Sunday I decided the computer was off limits for most of the day. That evening, while I was finishing up some chores, I let him play while I finished up my chores before bedtime.

I was carrying a load of clothing into the laundry when I glanced toward the computer where he was sitting.  Seeing him facing me, I immediately knew something was wrong.  His face was turned upward and looked as if he was stuck in the pose.  His eye lids were shut and his hands were up to his face, as if he didn’t understand why his eyes were closed. 

Soon his body started to have jerking movements.  I instantly grabbed him before he fell off the chair.  It was then that I noticed he was not breathing.  As I held him I lightly pounded on his upper back.  I didn’t know CPR, but had learned mouth to mouth resuscitation when I was very young.  I laid him down on the couch and was tilting his chin up when he started breathing again.  I was immediately relieved, but the crisis was not over.

Meanwhile his body was having these pulse-like movements and his eyes were still closed with twinge movements behind the eyelids. I felt like this was an awful dream.  I knew I should call 911.  I am not real sure how much time had went by.  It felt like a long time but was probably more like five minutes or so.  Before I could dial the phone, his eyes opened and the pulsing movements quit.  It then took several more minutes before he talked.  It was at that moment that I realized he had a seizure.  The adrenalin in me was slowing down and I broke down sobbing.

The whole experience was frightening. A first-time seizure isn’t anything you expect or that you can prepare for. You wonder, how could something so jarring affect this wonderful little creation that has come into your life. How could something so numbing attack that which is in your life that is pure innocence?

You ask yourself, why my son? Why my family? Did we do something that lead to this? Is this retribution? If so, for what? And why my son? He does not deserve this. If only the burden could be put on my shoulders. Let him live his life the fullest, and not have this cloud hanging over him. Even though we had not seen a physician yet, something inside me told me our life had changed and we were headed down a different path.

To be continued . . .

Scholarships: My son needs help now, not later

I was watching Oprah Winfrey’s final shows this week. There were several presentations regarding her contributions to education including her celebration of teachers, the girl’s school she founded in South Africa, her ability to touch the lives of so many children, her book of the month club or the scholarships to young men at Morehouse College.

As I watched this show honoring her, I wondered to myself what about my son. Will he ever feel the rapture and the power of education? Will college be in his future? If not, what will happen to him? What will his life be like? Without education beyond high school, I knew his life would be hard. Both my husband and myself have degrees from college. Even with this education, our life has been a challenge. I can’t imagine facing life without that little extra knowledge and without the advantages it may bring.

Right now my son’s education is in the hands of our public education system. This is the education system that everyone is talking about as failing to prepare our children to be leaders in the world. This is the education system that needs to be completely overhauled. Now keep in mind all of this criticism is in reference to mainstream education. This criticism is in reference to the children who don’t have reading problems. These are the children that do not have problems doing mathematics. These are not the children who have autism. These are not the children who struggle with school, who need to learn things in a different way, and who have learning disabilities.  I am not talking about the children that have developmental delays.  I am talking about children who need a little extra help.  There is a group of children who do not fall into the classification of children with developmental delays or in with children in the mainstream educational programs.  I am not talking about have a “quality of life” plan, which is directed at children with developmental delays. 

So what is a mother to do when she has a child that has learning disabilities?  How does she ensure that her child is prepared for an adult life, facing the world on their own?  This topic leaves me sleepless at night.  I don’t want my son to have to struggle, especially as a result of limited or inferior education. 

As you may already know there are scholarship programs for post secondary school for children with special educational needs.  Young people with special needs are finding their way to college more and more, as disability law mandates access to classrooms and campuses, and programs are developed to meet the needs of students with intellectual disabilities.  I am very thankful that these opportunities are available.

My concern is not with post-secondary school.  My concern is getting my child to post-secondary school.  I know that my son is at serious risk for dire consequences of not receiving a proper education.  If his education continues as it is in the public school system, he is going to have a hard, hard life.  So when it comes to scholarships, I need the help now. 

I need maximum access to any educational resources available so that I can get my son through middle school and high school.  I can’t rely on the public schools.  They don’t care.  Children like my son are considered to be a burden on the schools’ budgets and are the first place they cut.  It is very obvious to me that the public education system has an objective to limit resources to a child such as mine.  They seem to be very complacent to continue passing him from grade to grade without meeting any measurements of a quality education.  From what I have seen so far, the Individual Education Program is useless in regard to this.  It is a facade to make it look like they are providing an education. 

As evidence of this, our school system has been working with my son for 3 years learning basic math facts.  The reality of the situation is, if they were really vested in his education, he would have surpassed this level of math in year one.  The other evidence of this is my IEP meetings.  Everything is presented as going “great.”  I am not stupid.  I can see where my child is at, as compared to other children in his grade. 

My frustration is that I see me child falling further and further behind in a school system who doesn’t care.  I want to get him additional help, but I can not financially afford it.  I need help and I don’t know where to turn too.   Like I said, I appreciate the scholarship programs for post-secondary school, but I need scholarship programs now to get my son through secondary school.

My employer provides a scholarship program to the children of their employees.  Once again it is only for post secondary school.  I actually submitted an application for my son, and of course it was rejected.  From my perspective what good is a post-secondary school scholarship if I can’t get my son through secondary school.

I write this story to raise awareness.  I don’t think there is enough public attention on this subject.  I am sure if more people saw this topic through my eyes,  more could be done to help children such as mine.  I will continue in this awareness campaign, and continue searching the web for some program that may give my son a sliver of hope. I realize teachers have a hard job, but I need to focus on the child that I am responsible for, and at this point the teachers have let us down.

For more information on post-secondary education scholarships, check out these sites:

http://specialchildren.about.com/od/specialneedsscholarships/tp/Special-Needs-Scholarships.htm

http://www.allianceforschoolchoice.org/UploadedFiles/Home/School%20Choice%20Yearbook%202010-11.pdf

@RANDOM And The Message About Tourette Syndrome

May 15th through June 15th is Tourette Syndrome Awareness month. 

To get a little insight about Tourette Syndrome take a look at the video at @Random.  @Random was created to dispel myths and misconceptions surrounding Tourette Syndrome . Working closely with the Tourette Syndrome Foundation of Canada (TSFC) and Saatchi & Saatchi Canada, dozens of filmmakers, production companies, and people living with TS have joined together to portray Tourette Syndrome as it really is.  The video changes each time you watch it.  It is a wonderful idea and a great way to raise awareness about Tourette Syndrome.

Many people contributed their videos to help @RANDOM tell the message about Tourette Syndrome.