Posts Tagged ‘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 . . .

Since I have had some time on my hands and have had the opportunity to spend some time with my son, I have learned a little bit more about my son’s medical conditions.

My son has not had any seizures for over six months or longer. Up to now it has been difficult to tell because sometimes his non-epileptic seizures look like seizures. I am now pretty confident that the seizures he was having when he was younger are no longer happening. In those days his seizures always started with his eyes and head, and sometimes traveling on to other parts of his body.

Since I was going to be home with him full-time for awhile, I decided to slowly reduce his epilepsy medications. He was on depakote and tranxene. He has now been off both of these medications and has had no seizures. This is big for him. Eliminating these medications removed at least one ball and chain from around his neck.

He still has his VNS, which may be still providing some control over the seizures. We are approaching the time where we will need to change the battery in the VNS. He has had it since 2004 and it is about due for the battery to be dead. It will be a big decision to decide what to do. At times my son wants the VNS out. He doesn’t like the look of it in his chest and at times it will hurt him,which I suspect is from scar tissue. The last time he saw his neurologist he asked if it could be taken out. The doctor said we would talk about that when the time came.

My son also has this concern about having it in his body and that it prevents him from being “normal.” A year ago his someone made a stupid joke that he should be careful before the doctors turn him into a robot. Dumb joke. My son took it very seriously.

On the other hand, my son has mentioned that his VNS has always been with him. He is thirteen now. He questions whether to remove it because it is a part of who he is.

Decisions, decisions. We will see what happens next. It is wonderful having him off the medications. It will be interesting to see if there are improvements in his life as a result of getting away from the side affects of the medications. No more drowsiness. I wonderful how this will impact his learning. He is way behind in most of his classes. Is it possible that some of his learning disabilities were caused by his medications, or at least contributed to his learning difficulties? I guess we will see.

So now what’s next? The neurologist doesn’t know we did this. I am not sure what his reaction will be. I am also curious what my son’s epilepsy status will be labeled. Does he still have epilepsy? Is there a period of time when one is seizure free and one is no longer considered to have epilepsy?

This is a big change for us. When he was younger he was having cluster seizures twenty or more times a day. His seizures were sometimes triggered by bright lights. It had a big impact on all of our lives. And now, it appears to be over. I wonder for how long will I have my guard up? I am always watching, looking for that unusual eye blinking which indicated the start of a seizure. It’s an odd feeling. Waiting. Hoping nothing happens. Watching for any sign. I want to celebrate the moment, but am afraid to, in case it sneaks up on us again. Perhaps with more time this anxiety will go away. Lucky for my son he usually isn’t even thinking about it. Good for him. It s my job as his mom to carry that burden of concern. This way he can just live his life. I am so happy for him. We have plenty of time to celebrate.

It’s one of those times of the year that I share facts about epilepsy.  My family is impacted by epilepsy and that is why I am passionate about raising awareness.  Take a moment to read them, and share them with your friends.

  • Epilepsy is the 3rd most common neurological disorder in the US after Alzheimer’s & stroke according to the Epilepsy Foundation of America.
  •  In America, Epilepsy is as common as Breast Cancer, and takes as many lives.
  • Epilepsy and seizures affects 3 million Americans of all ages. That’s more than the entire population of most large cities including Philadelphia or even Chicago and DOUBLE the number of people known to be affected by autism.
  • Epilepsy affects 50 million people worldwide. That’s more people than were living with HIV/AIDS in 2008 according to UNAIDS.
  • 200,000 cases are diagnosed in the US each year. More than 20 percent are children under the age of 15.
  • Three percent will develop epilepsy by age 75.
  • In 70 percent of the cases diagnosed, no known cause is found
  • There are over 40 different types of seizures. Not all of them involve convulsions.
  • The mortality rate is 2 to 3 times higher among people with epilepsy and the risk of sudden death is  24 times greater.
  • In two-thirds of patients diagnosed with Epilepsy, the cause is unknown.
  • In over 30% of patients, seizures cannot be controlled with treatment.
  • Uncontrolled seizures may lead to brain damage and death.
  • According to the Epilepsy Foundation of America, about the same number of people die each year from seizures as die from either breast cancer or traffic accidents.
  • Historically, epilepsy research has been under-funded.  Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.

With these statistics how can you ignore the subject.  Join the cause and help us find a cure for epilepsy.

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.

The information provided here is from the Epilepsy Foundation.  November is a month an awareness month for epilepsy.  We need your help.  Check the Epilepsy Foundation’s website for more information and following them on Twitter.

Ignorance about epilepsy should not be acceptable in this day and age.  It is 2010, but take a look at some of the myths that exist about epilepsy.

Myth:  Epileptic seizure comes as a result of the body being possessed by and evil spirit and it is a curse of god. Reaction to myth:  The “evil spirit”  must be addressed via “black magic” or the individuals that have epilepsy become outcasts in society.  In parts of Kutch, India villagers have adopted a discriminating practice of branding the patient by forcing a permanent mark on his/her forehead.

 Myth:  If a woman has epilepsy her child will have epilepsy.  Reaction to the myth:  women with epilepsy should not marry and should not have children.  In some cultures the women were sterilized.

Myth:  If a person is having a seizure you should put something hard in their mouth to prevent them from swallowing their tongue.  Reaction to the myth:  In some culture they place onions, footwear etc. in the mouth of the individual having a seizure.

In certain parts of Nigeria methods which are used to resuscitate a person who is experiencing an epileptic fit include forcing the unconscious person to drink a mixture made of cow urine (which can lead to further complications), thrusting their limbs into a fire, and rubbing pepper into their eyes and face.

Malayalam films have given rise to many characters with epilepsy in lead roles. Most of these films show the person having a seizure being calmed down by a metal key-chain thrust strongly into the person’s palm.

In Cameroon the Bamileke of Maham believe that epilepsy is contagious. Treatment generally consists of a healer and undergoing dietary restrictions to help prevent the production of foam in the stomach. They believe that excess foam in the stomach rises to the head ultimately resulting in seizures.

In Malawi it is also thought that seizures are the result of an abnormality in the stomach that consists of moving insects which have somehow ended up there. To cure epilepsy, a traditional healer will mix herbs and roots and upon ingestion the person will vomit out the insects. 

In Swaziland and Ethiopia the therapies are based on the idea of purification and include enemas, vomiting, inhaling medicinal substances, and even exorcism.

Ayurvedic medicine has long been a popular treatment method for different illnesses in India. This type of treatment focuses on opening the heart and the mind and relieving the stresses and negative energies which are causing the seizures. This is done with enemas and purgatives, as well as ingesting purified butters (ghees) and oils cooked with drugs. Certain methods involve drugs being applied through the eyes and nose. More conventional remedies include massages and baths. Less typical remedies include cauterization of the parietal bones with needles and blood-letting or venesection (Siravedha).

Chinese folk medicine is a fairly common practice, also known as Dan Fang. Some of the remedies which it suggests are drinking a young girl’s urine, and eating fresh human brain or goat’s heart. Chinese folk medicine also recommends other forms of healing, such as herbal remedies and therapies in which needles are inserted into the skin.

In Nepal, epilepsy is associated with weakness, possession by an evil spirit or the reflection of a red colour. Bystanders who witness a seizure will often spray water on the forehead of the person experiencing the seizure of make him or her smell a leather shoe.

In 1976 in Germany, Anneliese Michel, a 23-year-old student had temporal lob epilepsy died from starvation when she stopped eating during a period of several exorcisms conducted by two priests who believed she was possessed by devils.

 In the Netherlands in 1996, a person was whipped and put into isolation because her seizures were thought to result from magic.

The Hmong of Laos believe that seizures are evidence that the person has power to perceive things that other people cannot see and can conduct trances.

 Other remedies for epilepsy tied to myths

Here are some other remedies used around the world to “cure” epilepsy:

  • Take nine pieces of young elder twig; run a thread of silk of three strands through the pieces, each piece being an inch long. Tie this round the patient’s neck next the skin. Should the thread break and the amulet fall, it must be buried deep in the earth and another amulet made like the first, for if once it touches the ground the charm is lost.
  • Take nine pieces of a dead man’s skull, grind them to powder, and then mix with a decoction of wall rue. Give the patient a spoonful of this mixture every morning fasting, till the whole potion is swallowed. None must be left, or the dead man would come to look for the pieces of his skull.
  • The dried body of a frog worn in a silk bag around the neck averted epilepsy and other fits.
  •  As reflected in the story of the boy with epilepsy in the synoptic gospels which was to be expelled by Christ and later by his representatives, the priests who conducted an exorcism.

Laws affecting people with epilepsy

In many countries legislation affecting people with epilepsy has reflected centuries of suspicion and misunderstanding about epilepsy. For example, people with epilepsy are often prevented from marrying or having children.  Here are some laws that victimized people with epilepsy:

  • In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.
  • In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970.
  • In the United States of America (USA), many individual States prohibited people with epilepsy from marrying. The last State to repeal this law did so in 1980.
  • In the In the United States of America (USA), 18 States provided eugenic sterilisation of people with epilepsy until 1956. Until the 1970s, it was also legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.

As you can see we have a long way to go in regard to raising awareness about epilepsy worldwide.  Some of this information was shocking to me.  Some of the treatment methods are horrific.  It is also shocking that some of these activities are not exclusive to “undeveloped countries.”  It is shocking that as late as 1980 there was a state in the United States with a law prohibiting people with epilepsy to marry.

This is one of the biggest reasons the epilepsy awareness campaigns are so important.  If we can’t eliminate these myths or the stigma surrounding epilepsy, how can we get to the next step which is to get people involved with assisting or funding research for the cure.

I encourage everyone to take the time to learn about epilepsy and join the campaign to raise awareness.

  Most information provided by:

 Ignorance is not Bliss: Epilepsy in Third World Countries
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Epilepsy+in+Third+World+Countries
By Anna Press