Posts Tagged ‘stress’

This is a follow-up to my blog post called Tourette Syndrome, in search for help . . .  Read on if you want to know what life is like when your child has Tourette Syndrome and you are desperate to find help.  In my previous post I described the doctors we had been working with and getting no positive results.  I also described this push by the school to get my son medicated.  I  talked about the medications we tried.  Finally I went on a search for a specialist that worked specifically with children that had Tourette Syndrome and who would look at the full picture of my son’s well-being.

As I said in the earlier post, I found a doctor pretty much by accident and we had to wait five months for our appointment.  Finally the appointment day arrived.  On the way to the appointment, my son was frustrated and didn’t want to go.  He was tired of doctors and he didn’t want to talk about his tics.  So we had a little fight as we drove to the doctor appointment.

Finally we arrive and get through the paperwork with the receptionist and then were escorted to a waiting room.  There were only two other people in the waiting room, a father and a son.  Soon, an elderly, short man entered the waiting room.  His hair was  gray and pulled back into a  pony tail.  Plus he had a gray, long beard.  A little like Dumbledore.   Immediately upon seeing him, I thought to myself, what an odd little character.  Suddenly he said my son’s name.  I was a little shocked.  This was our doctor.  This was Doctor D who was a specialist that we hoped would help us.  Definitely non-traditional.  Definitely not what we are used to in the stuffy world of neurologists.

Doctor D is the  Director of the Developmental-Behavioral Pediatrics Program and Clinical Director of the Developmental-Behavioral Pediatrics Clinic. In addition he is a Professor in the Department of Pediatrics and has a joint appointment as Professor in the Department of Family Practice & Community Health. He is Board Certified by the American Board of Pediatrics and by the American Board of Medical Hypnosis.

I later found out that his research interests include exploration of cyberphysiologic (self-regulatory) abilities in children and adolescents with headaches, Tourette Syndrome, children with sleep disorders, and in the ability of children to learn and use self-hypnosis to alter and regulate physiologic functions.  His bio said:

As an advocate for children and youth who live in families in communities I have an abiding faith in children’s ability to develop and cultivate skills in self-regulation and participate actively in their care toward promoting and maintaining optimum health. I believe in children and their families, and listen carefully to what children say and how they say it to best understand how I can help them and their family to help themselves. Most children and teens (and their parents) are pleasantly surprised to discover that they can learn self-regulation methods that can help them often dramatically with a wide variety of problems, from managing every day stress, to reducing/eliminating pain, to coping with repetitive procedures, managing fears and other forms of anxiety, eliminating habits.

Dr D led us to his large office, which was full of soft chairs and couches arranged comfortable and it didn’t feel clinical.  There was also a table full of 70s and 80s toy memorabilia.  The discussion immediately started with jokes from the doctor.  In fact the joking never stopped throughout our appointment.  He spent the hour talking directly with my son, with an attempt to have my son describe what was going on and to get comfortable talking to him.  Occasionally, he would turn to me for clarification or for confirmation.  One of the rules he told my son was, in our future appointments there were two words that were not allowed.  The words were try and can’t.  He told my son instead we would be using the word do.  Basically ‘Just Do It’, which he claimed was his slogan and Nike didn’t pay him a dime for it.  More humor.    Throughout the appointment he would test my son during the conversation to see if he would use those words.  Interestingly, my son caught himself every time just before he would have used one of those words.  The doctor commented that my son caught on quickly.

The majority of the conversation was the doctor asking my son questions about what kind of tics he had.  I was surprised to learn that my son had a hard time describing them.  Initially he said his whole body felt tight and that it hurt.  The doctor asked him what other ‘kinds’ of tics did he have.  My son responded questionably, “There are different kinds of tics?”  With a little reminder he started remember some of the movement tics he had and the vocal tics he had.

Toward the end of the appointment the doctor told my son that he could guarantee that he could reduce the number of tics my son was having and the intensity of the tics.  I was a surprised when he said this.  I don’t think I have ever heard a doctor use the word guarantee.  The doctor also asked if my son was anxious taking his shots for his insulin.  We described that my son had a real hard time changing his inset for his pump which was administered with a needle into the body.  The doctor said he could teach my son so that he will not even feel the needles. I addition the doctor talked about my son’s inability to fall asleep without taking melatonin.  He said he could teach my son to fall asleep and would no longer need the melatonin.

The appointment concluded with a confirmation that our next appointment was in two weeks and that the doctor would be showing my son and myself a video to explain what he was going to do.  And that was it.  That was our appointment with this new doctor who appeared to be an expert at hypnotism and teaching children self-hypnosis.  I was excited.  He recognized that my son was dealing with a lot of medical issues and that there is anxiety and stress associated with having these medical problems.  As we left the appointment heading to the car my son, with a smile on his face, said, “He is a really good doctor.  I really like him.  He is a hippy.  Kind of like you.”  I laughed and couldn’t wait for our next appointment.  We were headed for a new adventure.

To Be Continued . . .

You may already know that I have a son who has several medical issues including Tourette Syndrome.  For the last four years we have sought some relief from the tics which have become more extreme over time.  Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.

The neurologist hasn’t been convinced that all of the events my son has been having are tics.  There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures.  In pursuit of gaining some relief from these events,  he referred us to a neuropsychologist.  In addition he prescribed, at one time or another,  antihypertensive medications, which are medications whose original purpose is for treating high blood pressure.  The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine).  Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness.  The sedation affect wiped out my son and we discontinued using them.

The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback.  My son became really good at this.  Unfortunately it didn’t work well with his tics because he needed to do it before the tics started.  Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback.  The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized.  We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes.  It is a great way to just calm down.

This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements.  At one time he recommended that my son take:

Omega 3 Fatty Acids
Multi vitamin
Vitamin D

We did this regime of supplements for about six months.  Initially I thought it was working.  We actually had two weeks where my son had no tics. We had not experienced this since the tics had started.  Unfortunately this happened just before another school year started.  Once school started the tics came back with full force.

We continued to work with the neuropsychologist.  She was focusing on:

    • Identifying triggers for tics
    • Identifying tools to use when having tics
    • Tools to prevent bouts of tics
    • Addressing his anxiety
    • Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers.  I believe my son has learned how to identify some of the triggers and tries to minimize their effect.  He has also started eating different foods, which is a huge accomplishment.  I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful.  This last school year my son missed a lot of school.  The combination of his tics, diabetes and epilepsy was a lose, lose situation.  Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome.  Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.

Meanwhile the school is pressing me to identify something which would change the circumstances at school.  They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse.  So, against my judgement, I put my son on the anxiety medication.  It took me about a week to get a hold of my senses and I took him off again.  There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had.  She kept sending me names of neurologists, none with any specific expertise, just names.  She acted as if we hadn’t already seen doctor after doctor.  I also have learned that you just don’t pick names out of a hat.  Finding the right doctor is not easy.  Once again, against my instinct, we went to a pediatrician and she prescribed Valium.  I came to my senses pretty quickly on this one and never used them.

As a note of explanation, I am not against these medications.  There are times and people where these medications are not only effective, but necessary.  In regard to my son, in the last nine years he has been on numerous medications for his epilepsy.  Scary medications.  From this experience, I learned that getting the right medication is pretty much a trial and error type of process.  My son was already on a medication for his epilepsy that is also used for anxiety.  It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain.  Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.

It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child.  I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here.  Drugging my son was not the answer.  There are some things we need to accept.  The TS is here and we need to deal with it as it is.  I don’t have any miracles to make it go away.  In addition, it is a fact that with all of the health problems my son has he is going to miss school.  We needed to expect it and plan for it.  It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class.  Guess what.  No one responded to my letter.  Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year.  I didn’t here from her again.  At that point I just wanted to get through the end of school.  I would deal with the school before school started again.

Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics.  I also wanted someone who would look at the whole picture.  A doctor  said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem.  Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD,  and learning disabilities.  That is quite a bit for a 12-year-old boy.  I am very proud of him for dealing with it all.  I am not so sure I could do the same.  Up to now each of these medical issues were being addressed independently.

Anyway, I went on a hunt.  Thank goodness for the internet.  I noticed that if we were located on the east coast there would be more of a selection of doctors.  Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts.  So I just started calling hospitals and clinics and requested recommendations.  Initially they weren’t much help.  After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor.  After contacting his office, I found that he had a waiting list and it would be five months before we could see him.  That in itself meant something to me.  It was obvious that people were seeing him.  It was either because there just weren’t that many specialists or he was really good.  I decided we would wait and we would find out.

Finally the five months passed by and it was the day for our appointment.

To be continued . . .

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.

As a small child I always dreamed of being “somebody,” but at that time it was just a mere dream.  Now I realize that being “somebody” can become a reality in one’s life if one is determined and disciplined.  This determination is very strong with me and through the years I have developed a discipline which is necessary for achieving this childhood dream.  I decided that if I want to truly be “somebody,” then I must first improve myself so that I may be worthy of the honor.

The key to my plan of action for self-improvement is awareness.  I believe that awareness of the world, of other people, and especially of myself with make me a better person.  With awareness comes growth, and with growth comes the understanding.  Understanding the ways of the world, its people and myself will then truly make me “somebody.”

For some time now I have been making a conscious effort to look at the world I live in.    Since then, I have seen the babes of spring,  and have touched the sharpness of winter.  I have also heard the warm days of summer and have tasted the ripened fruits of the fall.  Seeing which way the wind blows and how the grasses grow has told me about life.  With this knowledge, I feel that I have become a better person because I know that I have grown . . . grown in awareness . . . grown in understanding.

In the past few years I have also taken the time to learn about the people of the world.  By observation and conversation I have learned that the people are very much alike and at the same time are very different.  Whether you are an American, or a Nigerian, or of any other nationality, you still basically are an emotional human being who is trying to happily survive in this world.  Yet despite this mutual existence, each of us is very different from one another, because of our individualism.  Different experiences, teachings and emotions have formed us into individuals.  The realization of the equality and the inequality of the people of the world has once again taught me much about life.  Hopefully this new understanding of the people around me will make me a better person for myself and also for the world I live in.

Final phase of self-improvement involves awareness of myself.  I now see that the more that I learn about myself the more I like myself.  And the more I like myself, the easier it is for me to deal with this world.  Through this inner search I have found what makes me happy and what makes me sad.  I have learned why the tears fall and why the frown turns into a smile.  From these things I now know what I want out of life and how I would like to be in that life. 

As I’ve tried to explain, I have observed nature and learned about people from many cultures, including a few individuals in my own back yard.  More importantly, I have met myself.  All of these things have come to me through disciplined awareness, my key to self-improvement.  What makes this realization so exciting is that it is an endless task to perform, because there are countless things and people in the world to see and to understand.  For now, due to this awareness, and this self-awareness, I can truly declare that I know who I am.  And believe me, that’s truly “somebody.”

You may have read in some of my previous posts that my son is in the sixth grade and has been on an IEP since first grade.  School has been a struggle for my son and myself.  I look at education in a very practical, logical sense.  What I have found out is that many times our educational system has no sense of being practical or logical.

Third grade for my son was a big hurdle.  It is the year that he started having tics.  It is the year I learned that you can not trust the school, and the school does not always have the student’s’ best interest in mind.  It is the year that I changed my approach in dealing with the school.

During the onset of tics, my son was being taught by a teacher whose mere voice raised anxiety.  Unfortunately I did not recognize what was going on until it was late in the school year.  Third grade was also the year when the students learn math facts.  They spent a significant amount of time memorizing addition and subtraction math facts.

The school used a program called Rocket Math to learn math facts.  It is a program that begins with easier addition and subtraction problems and gradually gets harder.  The student practices a set of math facts in preparation for the test.  The teacher determines how fast a student can write, which then correlates to how many math facts they need to get done on the test.  The test is a one minute timed test.  If the student correctly completes the number of equations required based on their writing speed, then the student moves on to the next set of math facts.  Each set of math facts get progressively harder as they work their way through each set.  The key to rocket math is practicing each worksheet over and over again.

Now my son had a couple of disadvantages here.  He has dysgraphia and had tremors, both of which made it difficult for him to write.  Supposedly the teacher adjusted his writing speed goal to take this into consideration.  Rocket math  was an activity that occurred all year-long.  Every day the students practiced their math facts with the intention of passing a set of math facts and continuing on to the next set.  Every day my son brought home a worksheet with the current set that he was working on at school. 

Close to the end of winter during third grade, I noticed that when we worked on the practice rocket math at home, it triggered my son’s tics.  Whether we were casually doing the math or practicing a one minute speed test, the tics would start.  All I had to do was bring out the green sheet of paper that had the math facts on it, and the tics would immediately begin.

When the tics had first appeared we were not sure what they were.  One form of my son’s epilepsy involved facial focussed seizures which included rapid eye blinking.  The neurologist had put my son through a number of tests including a long-term EEG.  The goal of this EEG was to capture the brain activity while these movement events were occurring.  The doctor asked me if there was a way to trigger the event.  I pulled out the green piece of paper with the math facts on it and the eye blinking, head jerking tics immediately started. As a result of working with our neurologist, neuropsychologists, and other specialists we determined that my son was experiencing anxiety, and his reaction to the anxiety was to have a tic.  His body had associated the green piece of paper with stress and it reacted to it with tics.   Once seizures were eliminated from the equation, we focused on the anxiety topic.  Besides seeing a psychologist, we also worked with a specialist that taught my son bio feedback and other relaxation techniques with the intent of preventing the tic episodes.  Unfortunately none of this was successful.

Meanwhile I talked to the school about my son’s situation with anxiety.  Besides rocket match, I could see a pattern of events that would raise my son’s stress and would result with a bout of tics.  The event included:

walking into the noisy lunch
 music class
violin practice, which we had to drop
any assignment that was difficult
transitions from room to room
going into a store or a restaurant
getting ready for school
walking in the noisy halls at school
playing with a rambunctious group of kids in the neighborhood
playing a video game where he was stuck on a level

Pretty much anything that could raise anxiety resulted in a bout of tics.  I explained this to the school but they didn’t really get it.  I asked them to stop the rocket math.  There had to be another way of teaching math facts without doing the one minute timed test.  I even asked them to put the rocket math on a different color paper.  Get rid of the green.  Now do you think they would cooperate?  No. 

I even introduced them to a learning system called touch math.  Touch math is a multi-sensory approach to learning math and works with student of all abilities and learning styles.  The key goal to touch math is reduce the need for memorization.  Each stage of touch math is reinforced with pictures, touching, and counting.  Research studies indicate that children transition from the concrete to the pictorial and finally to the abstract stage of learning.  Touch math is respective of this transitioning.  The founders of touch math made it their goal to help banish math anxiety, whether that anxiety is born of fear, lack of comprehension, or a learning disability.  It is very practical approach and a perfect solution for my son.

The school tried touch math for a couple of weeks, and before I knew it they were back to the green sheets with math facts and timed tests.  I had even bought the materials they needed to use for touch math.  During this time it was also obvious that the anxiety at school was expanding to other triggers. 

I don’t understand why a school would continue teaching with a method that was detrimental to my son.  The more the mind associates specific activities with anxiety the harder it is to get rid of the automatic response of tics.  The goal was to break that cycle before it got too ingrained in my son’s mind.

All of this was very logical, but for the next two years the school continued making my son do rocket math.  This raised a whole set of anxieties, and for two years my son was constantly having tics.  Over time the tics got worse, beginning with an eye blink or head jerk and evolving to full body jerks and screams. During this time the school also punished my son for having the tics, as if he was purposely doing them.

Why couldn’t this school see what this was doing to my son?  Why couldn’t they chose to teach math facts in a different way?  Even today, I don’t understand why they were so insistent on using rocket math.

You can understand my frustration.  What could possibly be the reason?  A different learning method would mean they would have to do a little extra work to enhance their lesson plans?  Were they lazy?  Or is it just incompetent teachers?  It has been this specific experience that opened my eyes to the fact that this school did not really care about my son or his education.  They were just riding out their time until they could pass him off to middle school.