Archive for January, 2012

Recently I saw commercial advertising Oprah’s show Master Class where Ted Turner tells stories of how his principles of honor, integrity and hard work have shaped his achievements.  The show is scheduled for January 29th.  In this advertisement a couple of the quotes from Turner caught my attention, including his statement, “You really want to be careful when you’re dealing with billions and billions of dollars.”  Later in the commercial it quotes him as saying, I lost my job and was divorced from Jane Fonda.  “I just gritted my teeth and said I’m going to come out of this,” which is his reference to his empire that had crumbled, which is most likely the biggest failure in business history.

Ted Turner is known as an American media mogul and philanthropist.  He was the founder of the cable news network CNN, which was the first dedicated 24 hour news channel.   He was the largest private landowner in the United States until John C. Malone surpassed him in 2011.  Turner has also been known to say some controversial things which has caused a stir around him, such as he advocated for American to only have two children, which sounds a little bit like the communist country China.  He also joked about banning men from public office: “Men should be barred from public office for 100 years in every part of the world… The men have had millions of years where we’ve been running things. We’ve screwed it up hopelessly. Let’s give it to the women.”  Now thinking about it, this may not be such a bad idea.  Turner’s empire continued to grow until things turned bad for Time Warner.  At the time Turner owned the majority of the shares of Time Warner’s stocks and it is rumored that he lost $7 billion when the stocks crashed.

The commercial is praising Turner’s come back and his contributions to various charities.  It was also said that he lost 80% of his assets in the Time Warner debacle.  This started me thinking about why Oprah and others were applauding his accomplishments. I don’t find his accomplishments that amazing.  First of all, he lost $7 billion dollars, which is nothing to be proud about.  So, is he being honored for his accomplishment of landing back on his feet?  Probably so.  But then I thought, is that really an accomplishment.  He said he had lost a job.  He was Ted Turner!  How hard was it going to be for him to get a new job.  He was close to the richest people of the world.  He had access to pretty much anyone he wanted.

Instead, I find the average American much more amazing because they don’t have access to the money, the people and the opportunities that Ted Turner has. Turner says, You really want to be careful when you’re dealing with billions and billions of dollars.” Well how would you like to deal with only $42,000, which is the average yearly salary in America.  It is those people who really have a talent for using their money appropriately and surviving in this country.  What if he was laid off like many of us America’s?  A real marvel is trying to live on $363 a week, which is the most amount of money that one can get from unemployment.  That is a real accomplishment. How would he like to have to make decision like whether to buy groceries or to pay the utility bill?  He said he lost 80% of his wealth.  That still left him with almost $1.8 billion dollar!.  I wish I had an opportunity to suffer with only $1.8 billion dollars.  A loss 80% of $7  billion is nothing compared to losing 80% of $42,000.

I was just thinking.  Sometimes you have to put things in perspective and come down to reality with the rest of us.

I don’t mean to totally slam Ted Turner or Oprah Winfrey.  In fact Turner’s 11 rules to live by are pretty good:

1. I promise to care for planet earth and all living things thereon, especially my fellow human beings
2. I promise to treat all persons everywhere with dignity, respect and friendliness
3. I promise to have no more than one or two children
4. I promise to use my best efforts to help save what is left of our natural world in its undisturbed state and to restore degraded areas
5. I promise to use as little of our non-renewable resources as possible
6. I promise to minimize my use of toxic chemicals, pesticides and other poisons and to encourage others to do the same
7. I promise to contribute to those less fortunate, to help them become self-sufficient and enjoy the benefits of a decent life including clean air, and water, adequate food, health care, housing, education and individual rights
8. I reject the use of force, in particular military force, and I support United Nations arbitration of international disputes
9. I support doing everything we can to reduce the dangers from nuclear biological or chemical weapons and ultimately the elimination of all weapons of mass destruction
10. I support the United Nations and its efforts to improve the conditions of the planet

11. I support clean renewable energy and a rapid move to eliminate carbon emissions

Engage Me!

Posted: January 25, 2012 in Education

This is a great video from YouTube which was created by a class who demonstrates how they would like to be taught.

When my son was in third grade he started to have these unusual movements, which later also included vocalizations.  The movements became so severe that my son was not able to go to school because the incidents would continue for hours and hours.  Typically they occurred in the night, which in turn deprived him of sleep.

My son also has myoclonic epilepsy, occurring in the frontal lobe, and upon observing and conducting an EEG, the neurologist indicated that the movements did not have the characteristics of epileptic seizures.  He concluded that they were non epileptic seizures.  We then began work with a neuropsychologist regarding how to deal with this unusual activity.

After I got the medical community working on the seizures, I also had to deal with my son’s school  My concerns with school was that I didn’t think they would be able to deal with these events while providing a safe environment to continue his education. Eventually, I took my son to school.  They were shocked about what was happening.  My son went to class while I talked with the principal, nurse and school psychologist.  My son walked into the school as he was having these movements and continued to have them in the classroom.

I told the principal that they were not prepared to have my son in school. My son’s movements were extreme and he could potentially hurt himself while being at a desk.  Who was watching him as he walked in the hall and prevent him from hurting himself if the events should cause him to fall down?  Who is making sure he doesn’t poke himself with a pencil?  What are you going to do about the loudness of his yells?  How are you going to give him some privacy?  How are you going to handle the other students when these events happen?  My son’s vocalizations sounded like yells of pain?  Who is going to differentiate these movements from his actual epileptic seizures?  Soon, here came my son’s teacher along with my son.  She said that he could not be in class yet until they got a little more organized.  In the end I told the school I would obtain from our neuropsychologist recommendations for accommodation.  Once those items were in place we would re-convene coming to school.  Then we left.  The second reason for this decision was the school could not accommodate his ability to learn when he would have these non epileptic seizures for hours in the night, causing loss of sleep.  I needed to be able to teach him when he was capable of being taught.  The school did not understand that a young man can not learn while his body is jerking and he is uncontrollable yelling.  Or, he is not able to learn when he has only had two or three hours of sleep.

A couple of weeks later the school contacted me to review their plan and accommodations that they had in place for my son.  It included gradually getting him back into the routine of coming to school, starting out with an hour and slowly working up to full-time.  To compensate for the abbreviated school day they provided him with a tutor, which is where I made one of my mistakes.  The tutor they selected was his actual third grade teacher.  Later I found out that she was one of the reasons that was causing my son’s anxieties, which then triggered the non epileptic seizures.  They created a screened off area of the classroom where my son could go while he was having one of these events.  It gave him privacy and it contained a bean bag to provide some safety.  Finally they provided an aid that would accompany my son wherever he went.  This also turned out to be a big mistake.  The aid would say things implying my son was faking these seizures, which in turn triggered non epileptic seizures.  It was a vicious cycle.

In the end, my son finished the school year, but this event was the beginning of a continuous decline in his ability to learn in the public school setting.  My son is now in 7th grade and this year we decided to do homeschooling because the school could not accommodate for his needs and continue providing him a “productive” education.  The trigger that made me make this decision was that in 7th grade he was working on the same math that he had been working on in the 3rd grade.  They were not making any progress.  Meanwhile, I knew my son was a bright individual, especially toward math.  Before he even went to kindergarten he had figured out on his own the concept of addition and subtraction.

It is now 4 years later and my son is still having these events, but they have drastically decreased as a result of taking him out of school.  We have worked with neuropsychologist for the last 4 years with the goals of 1) identifying triggers for the events, 2)what to do when he has an event and 3)general lesson on how to reduce his anxiety.  This also included learning bio-feedback. While seeing this neuropsychologist, we identified the fact that my son was having a combination of epileptic seizures, non epileptic seizures and Tourette Syndrome.

One other topic that you may run into is P.A.N.D.A.S., which is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. When my son was young, from the ages of one to two, he had severe ear infections, which eventually led us to have tubes put in his ears, which completely eliminated the ear infections.  Later, I found out that when there were outbreaks of strep throat at school he didn’t get sick himself, but was a carrier of it which usually caused me to get strep throat.  Of course this is all theory on my part, but it is interesting that my son may have a relationship to P.A.N.D.A.S.

Hopefully this post helps with your understanding of non epileptic seizures.  I am including below some definitions of some of the term you may hear about with non epileptic seizures or with Tourette Syndrome.

Psychogenic non-epileptic seizures (PNES):  , also known as Non-Epileptic Attack Disorders, are events superficially resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. Thus, PNES are regarded psychological in origin, and may be thought of as similar to conversion disorder. It is estimated that 20% of seizure patients seen at specialist epilepsy clinics have PNES.  The differential diagnosis of PNES firstly involves ruling out epilepsy as the cause of the seizure episodes, along with other organic causes of non-epileptic seizures, such as syncope, migraine, vertigo, and stroke, for example. However, it is important to note that between 10-30% of patients with PNES also have epilepsy. Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep.  The condition may also be referred to as non-epileptic attack disorder, functional seizures, or psychogenic non-epileptic seizures. Within DSM IV the attacks are classified as a somatoform disorder, whilst in ICD 10 the term dissociative convulsions, is used, classed as a conversion disorder.

Pseudoseizures or Hysterical Seizures:  While it is correct that a non-epileptic seizure may resemble an epileptic seizure, pseudo can also connote “false, fraudulent, or pretending to be something that it is not.” Non-epileptic seizures are not false, fraudulent, or produced under any sort of pretense.

Conversion disorder:  1.  A type of somatoform disorder in which unconscious psychological conflicts or other factors take the form of physical symptoms that are produced unintentionally.  2.  Somatoform disorder in which an individual presents sensory or motor symptoms that do not have a medical explanation

Somatoform disorder:  a mental disorder characterized by physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition, direct effect of a substance, or attributable to another mental disorder (e.g. panic disorder). The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person’s symptoms. Patients with this disorder often become worried about their health because the doctors are unable to find a cause for their health problems. This causes severe stress, due to preoccupations with the disorder that portrays an exaggerated belief about the severity of the disorder.  Symptoms are sometimes similar to those of other illnesses and may last for several years. Usually, the symptoms begin appearing during adolescence, and patients are diagnosed before the age of 25 years.  Somatoform disorders are not the result of conscious malingering (fabricating or exaggerating symptoms for secondary motives) or factitious disorders (deliberately producing, feigning, or exaggerating symptoms) – sufferers perceive their plight as real. Additionally, a somatoform disorder should not be confused with the more specific diagnosis of a somatization disorder. Mental disorders are treated separately from physiological or neurological disorders. Somatoform disorder is difficult to diagnose and treat since doing so requires psychiatrists to work with neurologists on patients with this disorder.  (Wikipedia)

P.A.N.D.A.S.:  an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever. The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection. What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.  (information provided for by http://intramural.nimh.nih.gov/pdn/web.htm )

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,  http://en.wikipedia.org/wiki/Conversion_disorder

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 http://www.jaylenschallenge.org/how-can-you-help,  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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Tourette Syndrome and my son
Tourette Syndrome, school and despair