Posts Tagged ‘Non Epileptic Seizures’

As I indicated in my earlier blog, third grade was a significant year for my son.  It is then that he started to exhibit some medical unusual symptoms. During the second half of the year my son was experiencing extreme body movements along with pain-sounding yelling.  The neurologist and neuropsychologist debated if these were non epileptic seizures or Tourette Syndrome or a combination of both.  What we did know is the EEG of these events did not have the pattern of an epileptic seizure.  We worked closely with the neuropyschologist to provide a plan for the school with direction about how to deal with these events.  In addition we set up a plan for my son to see the neuropsychologist on a frequent basis.

Keep in mind, my son’s first kindergarten teacher recognized he had learning disabilities.  By the time he was in first grade that got him reading and language support.  In second grade the school added some occupational therapy support.  Then his second grade teacher had reported that at the end of the year my son was having difficulty with math.  Even though I brought his second grade teacher to my next IEP, no actions were taken. 

During the second half of third grade the topic for math that was being covered in the classroom was learning addition and subtraction facts.  In my opinion this is what triggered the movement and vocal tics that my son was experiencing.  The way the students were being taught the math facts was via one minute timed test on a specific set of math facts, which progressively got harder as you worked your way through the sets.  Each student had a goal of how many correct math facts they could do in one minute, which included taking into consideration their writing speed.  As time went on, I finally figured out that it was these tests that were causing my son anxiety and the result was these extreme movement tics and vocal tics.  Just bringing out the green piece of  paper that the tests were given on would cause a round of these tics.

When this first started my son missed quite a lot of school because he had these movements at night for hours at a time and he had a difficult time functioning the next day due to lack of sleep.  The other big issue was his safety.  There was no way to truly predict when he would have a bout of these movements.  He would fall down or have his arms jerk.  The potential for him to harm himself was high.  Eventually the school understood there were certain things needed to be in place before he went back to school. 

My son needed a private place in the class room that was safe and provided privacy when he was having a round of tics.  They placed a bean bag behind a screened area. This really didn’t give him privacy.  The whole class knew he was having problems when he went behind the screen.  They could also hear his screams.  You can imagine the embarrassment he felt.  Just another thing raising his anxiety.

 They also provided an aide to be there for him so that he did not harm himself.  This turned out to be a big mistake.  She made him anxious and was very judgemental without having any experience with either non epileptic seizures or Tourette Syndrome.  She would constantly tell me son while he was having a bout of tics that he was okay.  To my son, he didn’t feel okay.  The movements were drastic and very real to him.  Telling him he was okay was like accusing him of faking his condition.

My son returned to school slowly, increasing the number of hours as time went by.  While he was in this part-time mode the school provided a tutor for him.  Unfortunately the tutor was his third grade teacher.  At the time I didn’t realize she was part of the problem.  During these tutoring sessions they required me to be present.  The only subject she worked on was Math.  She kept pulling out the green paper timed tests and my son would immediately begin to have these tics.  I finally asked her if she could teach this math without the timed test.  In my opinion, there had to be a way to teach him the math facts without doing these stressful timed tests.  She absolutely refused to adjust her teaching method, and obviously my son continued to have bouts of tics.

Here was an example of a very obvious problem and our school failed to adapt to the situation.  These math facts become a repeating theme in the next couple of years.  The unfortunate thing is my son had figured out addition and subtraction on his own before he even went to pre-school.  As a result of this situation in third grade he started to fall behind in math.  The school had all the information to take action as a response to intervention and instead failed.  The weight of that failure is now on my son’s shoulders.  The math story does not end here.

Continued . . .

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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

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.

Seizures are a symptom of epilepsy.  Seizures happen when the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled manner, during a seizure a strong surge of electrical activity affects part or all of the brain.  One in 10 adults will have a seizure sometime during their life.

Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.

Having a single seizure does not necessarily mean a person has epilepsy. High fever, severe head injury, lack of oxygen are a number of factors that can affect the brain enough to cause a single seizure. Epilepsy, on the other hand, is an underlying condition (or permanent brain injury) that affects the delicate systems which govern how electrical energy behaves in the brain, making it susceptible to recurring seizures.

Most of the information provided here is from the Epilepsy Foundation.  November is National Epilepsy Awareness Month.  The Epilepsy Foundation is launching a nationwide campaign to make 1 million Americans seizure smart this November.  We need you to help us spread the word!  The campaign is called “Get Seizure Smart.”  More information can be found at http://www.epilepsyfoundation.org/neam/ Take the quiz and see how much you know about epilepsy.

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
B-Complex
Probiotics
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 . . .