Posts Tagged ‘Tics’

I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

  • Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
  • Impaired vision (hysterical blindness) or impaired hearing
  • Loss/disturbance of sensation
  • Impairment or loss of speech (hysterical aphonia)
  • Psychogenic non-epileptic seizures
  • Fixed dystonia unlike normal dystonia[clarification needed]
  • Tremor, myoclonus or other movement disorders
  • Gait problems (Astasia-abasia)
  • Syncope (fainting)
  • Hallucinations of a childish or fantastical nature  [1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,

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 some basic information about Tourette Syndrome and a description of our experience with it.  It also includes a description of some behaviors that are happening in our society and my opinion about them..

Tourette Syndrome (TS) is a neurological disorder that  is misunderstood and has been stigmatized.  The entertainment industry, whether it be television, radio or the internet, has been criticized for depicting those with Tourette Syndrome as social misfits whose only type of tic is coprolalia (a vocal tic consisting of swearing).  The coprolalic symptoms of Tourette’s are also used for humor.  To the public, this representation of TS has created an inaccurate perception about people with TS.

Take a moment, go to Twitter, and do a search on the word Tourette.  The majority of the results that you will see are despicable. Individuals are pretending to have TS or accusing others of having TS and use it for an opportunity to swear in their tweets.  There may also be  the references to “Glenn Beck has Nazi Tourette’s.”  The other common tweet has to do with the Tourette’s Guy, who has a website and has posted videos.  Tourette’s Guys is a drunk, overweight man who claims he has Tourette Syndrome and spends his time video taping himself while he is philosophizing and swearing.  Some allege he really does have Tourette Syndrome, and some don’t.  Either way, I find him vulgar.  There was a time when I would send tweets to these tweeple and explain how bad the disorder is.  It is rather odd that a number of them responded by telling me off and then saying they had TS and could do what they wanted.  I find it very hard to believe that a person with TS would make these type of comments that are in these tweets.  I finally had to stop this confrontational tweeting because it just infuriated me, and put myself susceptible to a barrage of lewd comments from these tweeple.

Most recently, the lawyer of a woman,  formerly known as the Hiccup Girl, may be using TS as a defense tactic for murder.  The medical advisory board of the National Tourette Syndrome Association took issue with any defense based on the disorder.  We also recently had a politician, Prime Minister David Cameron making a jibe user a tourettes reference.

The other hot topic with people with TS is the bullying that may occur.  Bullying has recently become a hot topic in the U.S. due to some suicides that stemmed from bullying.  Bullying doesn’t just happen to the smallest kid in the class. Bullies target those who seem to be less powerful or not as strong. Bullies also often target children who seem “different”. Children with TS and other disabilities are, therefore, at significantly higher risk of being bullied. All students have the right to attend school free of fear of harassment and bullying.

TS is recognized as a disability in the Individuals with Disabilities Education Act (IDEA).  Disability harassment is discrimination that violates section 504 and its regulations. Under Section 504 and Title II, disability harassment in schools is defined as, “intimidation or abusive behavior toward a student based on disability that creates a hostile environment by interfering with or denying a student’s participation in or receipt of benefits, services, or opportunities in the institution’s program. Harassing conduct may take many forms, including verbal acts and name-calling, as well as nonverbal behavior, such as graphic and written statements, or conduct that is physically threatening, harmful, or humiliating.”

Check out Jaylen’s Challenge website, which is a grass-roots effort of a young man name Jaylen who has Tourette Syndrome and has made it his goal to reduce bullying for disabled children.  Jaylen’s website, at,  provides the following suggestions for how you can help with this cause:

  • Donate as much as you can. Don’t forget, donations over $10 gets an exclusive ‘Bullying No Way!’ glow in the dark wristband.
  • Spread the word about this cause. I am trying to change the world, one classroom at a time.
  • Don’t bully people for ANY reason. When you bully someone, it is because you are insecure with yourself in some way.  If you can’t help yourself, talk to a parent, a teacher, or another adult about receiving help.
  • If you are a parent and you know your child “picks” on other kids, don’t laugh and think it’s merely “child’s play” or harmless. This is serious. Kids are losing their lives. Talk to your children, educate them. Let them watch my videos under the video links tab.
  • Take up for someone when you see bullying. Just as I’m trying to do in a sense, ‘Pay It Forward’.  Stick together. A bully will pick on an individual, but a bully will not bully 5 kids standing firm together.
  • If you are getting bullied, you HAVE to tell someone. I know you don’t want to tattle and make it worse, but tell someone. Tell me and I will try my best to do an ‘in-service’ to your school if we have the funds available. The bully will never know it had anything to do with you.
  • Come back to my website often. I am going to try to receive a strong rally of supporters in order to get help to children.

Jaylen is a very courageous young man and is a fighter for doing what is right. Take a moment and look at his website.  You will learn more about TS and directly see how an individual lives with TS.

I think the portrayal of TS in the media is shameful.  Having TS seems hopeless.  The medical community haven’t made much success at improving the lives of those that have TS.  For those like my son, each day is a struggle.  I can’t count the number of days my son has come home from school crying because of events that happened with his peers. Even more so, there have been numerous times when someone called him “retarded” because of his TS.  (Coincidently, Congress recently took action on the use of the word “retarded” and has removed its reference from all federal laws.)

Every time this happens it wounds my heart.  Every day, I wish I had the power to take away this disorder from my son.  I would rather carry that burden myself, than have him struggling day after day.  Unfortunately I do not have that power to do this.  Instead all I can do is help raise awareness about Tourette Syndrome and to continue looking for a cure.  I know I am only one person, but I am slowly growing a village, and who knows where this may take us.

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I am so glad that 2011 is coming to an end. It wasn’t a very pleasant year for my family. My son and I have been on our own for about three years while my husband has been in another country trying to create some financial stability for our family. A failed business, my son’s medical bills, our own health, and ailing parents have really set us back financially. In three years we have seen my husband for only two months. It is not easy dealing with life’s challenges without your husband or your father. This has been really hard for my son. He doesn’t understand that his father is sacrificing too. He doesn’t understand why his father had to go to another country.  He doesn’t that his father does not have access to the same opportunities here in America.

This year was a personal challenge for myself due to some health issues that creeped up on me. A year ago I was diagnosed with type 2 diabetes. And then for about a year I started to have some unusual symptoms including dizziness and loss of memory. The loss of memory was getting pretty serious. My success in my career was mainly due to my memory and the creativity of the mind. Finally after going through some tests it was determined that I had hypothyroidism. Since starting the medication things have improved but not totally back to normal.

Who knows, perhaps I am back to normal. Perhaps this is just my stage in life. I am over 50 years old, going through menopause, have diabetes, am over weight, suffer from both anxiety and depression, and have a thyroid that isn’t working. Perhaps this is the new normal.

One of the other big challenges we have been dealing with is my son’s type 1 diabetes. He was diagnosed a year and a half ago. A year ago he went on an insulin pump. Yet his blood glucose is still out of control. He is 13 years old and does not understand the seriousness of diabetes. I fight to get him to test his blood. I fight to get him to take his insulin. He is angry about the whole situation and I haven’t figured out a way to get this turned around. And now to top it all off I don’t know how I can keep paying for his diabetes supplies. We are struggling. We aren’t even able to live from paycheck to paycheck.

As some of you may know my son has several chronic health issues besides the diabetes. He also has epilepsy, non-epileptic seizures, Tourette Syndrome, an anxiety disorder, a little OCD, sensory processing issues, high functioning autism, and a little ADHD. That’s a lot to deal with. It all seems to be related. As you know many of these conditions overlap each other. The diagnosis is difficult, and the treatment is nearly impossible. Thus, this is where all of the medical bills come from.

Besides the diabetes, the other thing that was really beating us up was his Tourette Syndrome. He was having hours and hours of these violent physical tics and loud vocal tics. They were exhausting. Nothing seemed to help. We tried everything including medication, therapy, self-hypnosis and bio feedback. Nothing really worked. For most of this to work you have to really understand your tics and try methods to prevent them from happening. Unfortunately my son hasn’t quite figured that out.

Between all of the doctor appointments and nights with no sleep due to theses tics I was missing quite a bit of work and my son missed quite a bit of school. Lucky for me at work I had intermittent medical family leave time and was able to make up my time by working remotely. Usually my manager understood and then sometimes he didn’t. On the other hand my son’s school did not understand. They didn’t understand why he couldn’t attend school when he spent five hours or more in the night having full body jerks and vocal yells. They didn’t understand he needed to go to medical appointments. They didn’t understand that on top of his medical problems he is going to get normal illnesses such as the flu or a sore throat, or a cold, or a stomach ache. It got to the point they wanted a doctor’s note for every day he was having problems. Damm, I couldn’t afford to take him to the doctor every time he was sick or every time he had a bout of tics at night! They didn’t understand that there were no answers. The doctors had no cure. We have seen the best doctors in the country. On top of all this they didn’t understand that we needed to develop a plan that would educate my son with the restriction he has in life and teach him when he is able to learn.

So, this fall I took some time to evaluate the situation as it relates to my son’s education. As you may already know my son has some learning disabilities. He has been on an IEP since first grade. But in the last four years he has made no progress in math and very little progress in reading. He didn’t have the right accommodations in place, even though I would make suggestions, and I don’t think they were teaching him in his learning style. I don’t think they even knew what his learning style was. In fact I don’t think they cared if he was learning. I knew if I let things continue, my son would be graduating from high school and not be able to read.

I then realized I could do a much better job than the school. I was educated. I have a master’s degree. I know my son is quite smart and I just needed to take control and provide him with the education he deserves. So we made the decision to home school. And yes it isn’t easy. I work full-time. The key to it is to be very organized and planning ahead. I have my lesson plan for the whole year, with detailed daily plans that are a month ahead of us. My son follows a schedule while I am at work, and then in the evening we have class together. I am following a flipped classroom approach, where the detailed project work we do together. I take full advantage of information and applications that are available on the internet and educational television programs. I am taking a very practical approach to his education to ensure he learns what he needs to survive in life and to be a contributing citizen to his community. It is not easy, but we have already made tremendous progress since we started in October.

On top of all of this we have had a few more bumps in the road. Last summer we were rear-ended in our car. We both had whiplash and my son had a concussion. The car was totaled. Great, we have no money and I wondered how in the hell was I going to get a car. If I didn’t have a car there would be  no job. I commute about 35 miles away.  Between cashing in my 401K, which wasn’t much because I had already used most of it for all of the other emergencies, the insurance check, which wasn’t much because my car had 275,000 miles on it, and my gracious mother I was able to get a car. This was one less pressure off my mind.  THANK YOU MOM.

This year I have also been facing parents who are getting older and their health is becoming more and more challenging. My father was seriously sick for six months. He has been seeing many different specialist, all of them unsure of the diagnosis and each of them coming up with something different.  Most recently he saw a heart specialist and they have determined he has a blockage.  They will be dong surgery in the near future.  Most recently my mom is having a possible cancer scare. We will know more in the next month. She is a tough lady. She has survived breast cancer and uterine cancer.  The doctors are going to do a biopsy.  Hopefully it isn’t cancer.  We will see.

This year we also lost someone very dear to us. My husband’s brother died from cancer. He was in a country where he didn’t have access to medical treatment for cancer. He died within 9 months of being diagnosed. The end was bad. My husband was literally donating his blood daily to try to keep him alive. His wife went from hospital to hospital to try to buy blood. Medical care in third world countries is limited.  It was a terrible situation. But now he is at peace. We miss him dearly. He was kind and generous. More importantly he was greatly loved.

So we are almost to the end of 2011. The holidays are here, even though I don’t feel like being in the holiday spirit. I think to myself, let it be over. What could be worse than this year? I spoke too soon. My company informed me last week that my position was being discontinued and I was being laid off. What! Not now. My first thoughts were, I have to keep my son’s health insurance. I cried. Talk about sucker punching you when you are down.

I am telling you all of this because I have had a bad year and needed to get it off my chest. I am also telling you this because I am an example of one of those Americans that is struggling.  Looking back, my life has never been easy. BUT, I am also a survivor. I will get another job. I will take care of my son. Life will go on. I may not have my own home. My apartment may not be all decorated. I may not have a lot of clothes. I may not go on vacations. I may not be able to eat at restaurants. Sometimes I may not feel the best. I might even feel sorry for myself. But I am alive. I have a family that I love. And what else would I do. Give up? What would happen to my son if I did that? I have to be here for him. I have to make it. Sometimes you just have to do what you have to do, and that it is how it is with me. Doing what I have to do.

Here to 2012! It is going to be a great year.

The national Tourette Syndrome Association, Inc. is excited to inform you that “Different is the New Normal,” a new film that demystifies the stigma of Tourette Syndrome, will air Sunday, November 6 at 6:00 pm on WTTW in Chicago. The film captures the courage and triumph of Ariel Small, a teen with TS, and features James Durbin of “American Idol” who inspired the film title.

 For those outside the Midwest viewing area, the one-hour documentary is available for the national audience for a limited time here.

Moving and Intimate Portrait –

Featuring James Durbin of American Idol, Who Inspired the Film Title –

Captures the Courage and Triumph of High School Senior Ariel Small

 CHICAGO, IL – October 27, 2011 – You cannot control the tests of life, but how you confront those challenges defines who you really are…. Ariel Small was born in suburban Chicago, the middle child in a close-knit family of five boys. When he was 6, Ariel’s parents became concerned when they noticed he was exhibiting odd facial movements that he couldn’t seem to control. Ariel was diagnosed with Tourette’s Syndrome, a neurobiological disorder affecting an estimated 200,000 people in the U.S. alone. Different is the New Normal, premiering in the Midwest on WTTW, Sunday, November 6, 2011 at 6:00 p.m. and on PBS nationally in May 2012, closely follows Ariel’s incredibly moving journey to overcome obstacles and bust the misconceptions surrounding Tourette’s. Along the way, a meeting with James Durbin, whose own embattled path led him from brutally bullied student living with Tourette’s to nationally-celebrated American Idol Finalist, helps reinforce Ariel’s own belief that anything is possible.

 One of the disabling aspects of Tourette’s is the tics that disrupt daily function, but Ariel found that another was the constant need to prove that his symptoms were real – and that he wasn’t faking them just to be disruptive. Different is the New Normal introduces viewers to an amazing 17-year-old who refuses to be defined by a disorder and instead chooses to validate, advocate and educate.

 The film is a presentation of Creative News Group in association with WNET New York Public Media, the parent company of THIRTEEN and WLIW21, New York’s public television stations and operator of NJTV.

 “I have made it my mission to educate the world about Tourette’s Syndrome and pave a path for all of the kids who struggle with Tourette’s on a daily basis,” said Ariel Small. “My hope is that Different is the New Normal will change the way people think and feel about those they perceive as different and encourage them to look past those differences and see how alike we really are.”

 “Different Is the New Normal captures the pain and frustration many parents and their children experience,” said Neal Shapiro, WNET’s President and CEO. “Ariel’s inspirational story provides an uplifting perspective to this often misunderstood disorder, and will inspire everyone who watches this film to think about people as individuals, not as labels.”

 Produced, directed and written by Emmy Award-winning NBC News veteran John Block and directed and edited by Chicago native Matt Wechsler, who also is the film’s cinematographer, Different is the New Normal is an acutely personal and ultimately uplifting first-hand account of Tourette’s through the eyes of Ariel Small. According to the Tourette Syndrome Association (TSA), the only national non-profit membership organization in this field, Tourette’s is a neurobiological disorder characterized by involuntary and repetitive physical and vocal tics.

 At first, the Smalls shared the common preconceived notions of Tourette’s stereotypical symptoms such as compulsive outbursts of obscenities, but that behavior actually belongs to a rare form that affects only a small percentage of patients and Ariel exhibits none of these traits. With his permission, Robin Small turned the camera on Ariel to let viewers in on their family’s emotional journey to surmount the challenges of living with the disorder and break through the stigma and shame associated with Tourette’s.

 “WTTW is honored to be the first station in the Midwest to air this important film, which puts a human face on a condition about which there are many misconceptions,” said Dan Schmidt, President and CEO of WTTW.  “It is especially significant given that the Smalls are from the Chicago area, and we feel the telling of their story aligns with WTTW’s mission to educate and enlighten our audiences.”

 “We hope that this documentary changes people’s perceptions of Tourette’s Syndrome and will inspire children who are struggling with it,” said Robin Small, Ariel’s mother. “It is extremely important to separate the person from the disorder.  We are all different and it is these differences that make us unique.  Understanding and empathy are qualities of a successful perspective that will help individuals succeed in life.”

 To help safeguard other children from the hardships he has faced since he was young, Ariel’s laudable mission is to speak out in order to demystify Tourette’s. As an Illinois Youth Ambassador for the TSA, he was invited to address members of Congress and their aides about Tourette’s at a special luncheon. In addition he has developed a presentation designed to increase awareness about Tourette’s Syndrome and visits Chicago-area middle schools with his important message of acceptance. The all-conference captain of his Varsity football team, Ariel has achieved high honors each semester of his high school career and also finds the time to mentor local youngsters with Tourette’s Syndrome.

 Different is the New Normal is a presentation of Hourglass Films and a production of Small Boys Productions and Creative News Group in association with WNET New York Public Media. For nearly 50 years, WNET has been producing and broadcasting national and local documentaries and other programs for the New York community and beyond. Major support for the documentary is provided by David and Robin Small. Executive Producer is Robin Small. Producer, Director and Writer is John Block. Director, Editor and Cinematographer is Matt Wechsler. Composer is David Varga. Narrator is Edie Magnus. For WNET’s Creative News Group, Executive Producer is Mary Lockhart. Executives-in-Charge are Stephen Segaller and Neal Shapiro.

 To learn more about “Different is the New Normal” click here and to learn more about Ariel Small, please click here.

This is a follow-up to my post called Our Experience With the Short-Term EEG for Diagnosis of Epilepsy.   Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described my son’s short-term video EEGs and some of the frustrations we faced.  I also discussed the requirement for perseverance and to trust your instincts.

As I have said, there was a lot of debate about what these events were that my son was having.  My son’s videos of his events were looked at from doctors all over the country.  They were also reviewed at a symposium for practitioners who specialized in movements disorders.  The reviews ended inconclusive.

We had seven or eight long-term  video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  You may wonder, why so many.  Well my son’s epilepsy was not typical and it appeared there were multiple kinds of seizures going on.  The majority of his seizures started with facial oriented seizures.  They included odd eye blinks, head jerks and eventually body jerks.  One of the neurologists referred to this string of seizures as the Jacksonian spread.  Jacksonian seizures are movements that start in one muscle group and spread systematically to adjacent groups, reflecting the march of epileptic activity through the motor cortex.  In my son’s case the seizure would affect the muscles by his eyes, the side of his mouth and onward.

As a part of the diagnosis process they ran numerous blood tests.  They were trying to see if there was some genetic issue or other neurological disorder.  Eventually it took all my strength to hold my son down so that they could take the blood tests.  As he sat on my lap, I wrapped my legs around his legs and then held his arms as the technician took his blood.  He hated it.  I hated it.  To this day he is terrified to give blood tests.  There was a time in the hospital when they were taking some blood and something went wrong and all of a sudden blood was squirting everywhere.  It totally freaked him out.  It was an accident but, who could blame him from being frightened.

One of the blood tests that they took was checking for metals in his system.  They did this blood test many different times and each time the results came back with the observation that there were unidentified “inclusions” in his blood cells.  I was a little frustrated because something was not right but the doctors did not know what the inclusions were.  In the end they kept taking the test and switching labs until they got the results they wanted.  To this day I don’t know if this was evidence of something that was going on with my son.

During this search for a diagnosis, my son also saw a couple of different ophthalmologists.  When my son has a seizure that affects his eyes and face he complains that it hurts, which is why they sent us to ophthalmologists.   All of the tests with the ophthalmologist did not turn up anything that explained the seizures or the pain.  They did diagnose him with a severe astigmatism.  So he wore glasses from age 3 1/2 until he was 7.  At age 7 the ophthalmologist said my son’s eyesight was near normal and he did not need to wear glasses anymore.  I really don’t understand how you can go from a “severe” astigmatism  to normal within three to four years.  Later still when he was ten, an ophthalmologist discovered something unusual at the back of one of his eyes.  In the end they concluded that it was scar tissue.  Still, I don’t know if this has anything to do with what was going on with my son’s eyes.

We had done so many tests that I could not bear take my son to the doctors.  One of the tests that they did to test for neuromuscular diseases was an intramuscular Electromyography (EMG).  An EMG is a is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  It evaluates the potential generated by muscle cells when these cells are electrically or neurologically activated. To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue.  The needle was long, really long.  Like three inches long.  With no anesthesia or pain reliever they inserted this needle into the calve of my son’s leg.  He screamed in pain when they did it.  The technician encouraged him to hang in there and told him it would be over soon.  I held onto him tightly because I didn’t want him to go through this again.

It was torture.  It broke my heart to see him go through this pain and hysteria.  It was clear he didn’t understand why they were hurting him, and he begged me to help him.  He was only four at the time.  The memory of this is vivid in my mind.  It took everything I could to not break down and cry.  In fact, I did cry.  I knew that I had to remain strong for him and if I started crying in front of him it would only make things worse for him.  I really don’t know how this happened, but when I cried the tears only came from one eye, the eye that was away from him that he could not see.  In the end we got through the test which turned out to be normal.

At one time we thought perhaps the seizures were evidence of high or low blood glucose.  My son’s seizures started every single morning within twenty minutes after waking up.  There was a theory that this may be an indication of his blood glucose being off.  So, for five days we woke up and before we ate I took him to our pediatrician and they would test his blood glucose.  I didn’t have the heart to do it myself.  In the end it turned out to be normal.  Oddly, down the road my son’s blood glucose was going to be an important event in our lives.

Over three years my son had three MRI’s.  For the first MRI, they gave him a rectal medication that knocked him out.  Once again I had to hold him down.  The doctor and nurse assured me that he would not remember the administration of the drug or the MRI.  In the end they were wrong.  A short time after these tests, I took my son to a psychologist because he was beginning to show signs of being traumatized.

A traumatic event involves a single experience, or an enduring or repeating event or events, that completely overwhelm the individual’s ability to cope or integrate the ideas and emotions involved with that experience. The sense of being overwhelmed can be delayed by weeks, years or even decades, as the person struggles to cope with the immediate circumstances. (Wikipedia)

At the time I had no idea what a huge effect all of these tests had on my son.  Initially, he exhibited wild, careless behavior.  It got to the point I had to constantly hold his hand because he would bolt off, unaware of any danger around him.  On several occasions I caught him just in time when he was headed toward a busy roadway.  He started showing fits of anger.  Anything could set him off.  There were times he was deeply sad.  You could see it in his face and his eyes.  He also had a real hard time falling asleep and had numerous nightmares when he finally did sleep.

The psychologist, in a playful environment, worked with my son to re-enact what was upsetting him.  He investigated what my son thought of  doctors.  On our third visit this doctor had created a crude replica of the electrodes of an EEG.  Then he asked my son to show him what the doctors had done to him by using a doll.  I was shocked about the details that my son remembered.  At one point he poked the doll on the bottom.  It was clear to me that he remembered them giving him the rectal Valium.  The doctors were wrong.  He remembered everything they did to him.  To him he was being tortured.  He didn’t understand what they were doing to him and why.  He had no understanding about his epilepsy.  He didn’t even have the language skills to talk about what was happening to him.  In years to come, I started to see the impact of this trauma.

Prior to my son’s first seizure I was very sensitive about using drugs.  I had taken the position that drugs could do harm, especially since there are few long-term tests for medications.  Upon the arrival of epilepsy, I had to let down my guard.  I could not fix my son, no matter what I did.  I needed to trust the doctors, even though it was hard.  It wasn’t easy.  It still isn’t easy.  But I was desperate to find out what was wrong with my son, and then hopefully find a cure.

The neurologists were running test after test as a means of eliminating things from the possible diagnosis.  My son was a guinea pig enduring test after test.  At one point we decided to try medication that is used for tics.  They put my son on  clonidine, which is a medication usually used to control blood pressure, but can also be used to control tics disorders.  After trying it for several months we also tried liquid Valium (diazepam), which also did not give him any relief from the eye movements.

Over time the neurologist prescribed many types of antiepileptic medications.  In four years my son had been on:  Clonidine, Valium, Tegretol, Depakote, Lamictal, Keppra, Topomax, and Clorazepate.  Some of the side affects of these drugs include (

  • Clonidine:  Constipation; dizziness; drowsiness; dry mouth; headache; nausea; tiredness; trouble sleeping.
  • Valium:  Drowsiness; incoordination; muscle weakness; tiredness.
  •  Tegretol:  GI upset, weight gain, blurred vision, low blood counts, low blood sodium (hyponatremia). Carbamazepine causes a rash rate of a few percent, sometimes even the dangerous rash called Stevens-Johnson syndrome
  • Depakote:  weight gain, tremor, hair loss, GI upset, blood count decreases, hepatic or pancreatic injury, bone weakness over time (osteoporosis)
  • Lamictal:  dizziness, double vision, headaches, coordination problems, blurred vision,  nausea, vomiting
  • Keppra:   dizziness, fatigue, insomnia, but the more troublesome problem can be irritability and mood changes
  • Topomax:   thinking and memory problems, renal stone,  glaucoma (increased eye pressure) and weight loss
  • Clorazepate:  Blurred vision; clumsiness; confusion; dizziness; drowsiness; dry mouth; headache; lightheadedness; nervousness; stomach upset; unsteadiness; unusual weakness.

The routines for going on a new medication and coming off a medication is exasperating.  Each drug requires that you slowly bring up the dosage over time.  In fact one of the drugs had a rash side effect which could lead to death if administered too fast.  At the time many of these drugs had not been tested for children, nor were approved for children.  In addition, most of these drugs did not have a liquid form.  We then had to cut and crush the tablets and put them into something that you could get your child to eat.  One time I asked the pharmacist what he would recommend that I use to mix the drug with, and he would not recommend anything, because the drug was not meant for kids.  So I was on my own, and we used strawberry pancake syrup.  Later on yogurt worked really well.

So for every drug change it meant weeks to slowly decrease his current medication and then slowly increase the dosage for the new medication.  It was tedious.  In the end, most of it did not work.  At one point one of the neurologists thought maybe the seizures were being precipitated by the medications themselves.  So we took my son off all medications for about nine months.  No change.  The seizures did not decrease, nor did they increase.

For over three years my son had every test the neurologist could think of.  We were no closer to a diagnosis than we were the first day he had a seizure.  More than $200,000  in medical bills and we still did not have any answers, and my son was still having seizures.

To Be Continued . . .