Posts Tagged ‘EEG’

Our new school appeared to be very nice.  The principal immediately set up a meeting to discuss my son.  Besides himself, the school nurse, a counselor, and a couple of different teachers attended.  I explained to the group that we were originally in Ohio, temporarily transferred to a Wisconsin school for about three weeks and were now living in this school district.  I explained to him that my son’s kindergarten teacher had already recognized that my son had learning disabilities and that they were just starting the process of getting my son some support when we had to move.

It was during this meeting that the principal indicated that they only request records from my son’s previous school, which was the three week school.  In the end it was obvious to me that the three week school had not received any records from Ohio yet and as a result of this had no indication regarding arrangements to be made. 

The remainder of the meeting that day consisted of a discussion about my son’s epilepsy and we watched a video, where his seizures had been captured on tape.  I wanted to make sure that the school could recognize the seizures, because my son’s seizures did not present themselves in a typical, grand mal-like fashion.  I also wanted them to understand what the vagal nerve stimulator was, which my son had, and what to do with it if a seizure should occur.  In the end a health plan was put into place to cover how to deal with the seizures.  At that time, no more discussion occurred about learning disabilities.

It took me about a year to find a good neurologist to take my son’s case.  Originally we went to Mayo Clinic, which was one of the reasons we chose this area to live.  After about three appointments at Mayo, it was obvious I was getting nowhere with them.  Meanwhile my son was having seizures twenty or more times a day.  I finally found a neurologist in a nearby city.  He did a short-term EEG, followed by a stay in the hospital for a long-term video EEG and a MRI.  In the end the neurologist confirmed that my son’s seizures originated in the front left lobe of the brain, with a tendency to spread to other parts of the brain (this is sometimes referred to as the Jacksonian Spread).  He then prescribed two medications.  After about four weeks we still had no relief and he changed one of the two seizure medications.  Within about two weeks my son’s seizures had drastically reduced.

This neurologist also spent time explaining that other things can come with seizures, such as learning disabilities, ADHD, and other things.  He then scheduled my son to be tested by a neuropsychologist.  She would do extensive testing, and provide recommendations for accommodations for school.

By this time, my son was approaching the end of first grade.  The school finally recognized that my son needed an IEP, which was classified as Other Health Impairment, due to the epilepsy.  They told me that they would do some testing to determine my son’s needs.  I shared with them that my son was being tested by a neuropsychologist.  The school sounded grateful when I told them I would share the findings with them as soon as I got the results. I think in the end there was only one additional test the school ran that was not covered by the neuropsychologist.  Thankfully the neuropsychologist gave us detailed recommendations for services or accommodations needed for my son.

Once the school drafted the first IEP they were pretty diligent in including the recommendations from the neuropsychologist.  Besides day to day accommodations, they included access to a reading specialist, a language specialist, and an occupational therapist.  My reaction to this was:  so far, so good.

Soon my son was in second grade and was still having a few small seizures each day, but non as drastic as they were in kindergarten.  By the end of second grade his teacher talked to me privately and said that my son was also struggling with math, especially with the topics being learned at the end of the year.  I asked her for her opinion about shifting my son out of the main stream class and into special education.  She thought it was a good idea and came to my next IEP meeting, which occurred at the end of second grade.

From this IEP meeting, I started catching onto the games played with the “IEP.”  In our experience more time was spent figuring out how to fund accommodations rather than identifying the needs for my son.  The  IEP carry over process from year to year was done in a nonchalant manner and became more watered down as time went by.  I was new to all of this and did not know what to do.  At that time, I thought my son’s education was in the hands of experts who should know what needs to be done.  The big catch was they appeared to be so nice and caring, but in reality they were trying to just “deal” with me, and then do their own thing. 

I was very concerned for my son and knew how critical reading and math were.  I knew that if you successfully learned how to read and do math you could be successful in life.  So I took the matter into my own hands and that summer hired a tutor to work with my son.  The tutor happened to be my son’s second grade teacher. She was successful of getting my son to advance by two reading levels.

Third grade became a pivotal year for us.  A lot happened and the real nature of  the broken school system began to show its under-belly.

Continued . . .

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My son has been living with epilepsy for the last nine years.  When it started the whole experience was frightening.  Dealing with neurologists was always a challenge.  And it was torture putting my son through all of the tests.  There is not a day that we are not reminded about his seizures.  We desperately need a cure and the only way to do it is to get more people supporting the research.

Check out these statistics that were provided by Jessica from Living Well With Epilepsy.  She also has other great information available on her site.

NIH Data
The NIH releases a report each February which provides detailed information on which diseases and conditions would receive how many millions of dollars in research funding. This information is available to the public and easily searched.

You can check out the full report here or you can take a look at the excerpted information below. As I did last year, I’ve pulled together information on research dollars allocated, prevalence, and new cases below so you can see the comparison to epilepsy.

2011 Numbers
Research dollars in millions
Epilepsy 
Estimated in 2011: $134
Estimated in 2012: $137
Prevalence: 3 million in US (50 million worldwide)
New Cases: 200,000 new cases each year in US
Deaths: 45,000 in US each year

Breast Cancer
Estimated in 2011: $763
Estimated in 2012: $778
Prevalence: 2.6 million in US
New Cases: 200,000 new cases
Deaths: 45,000 in US each year

Autism 
Estimated in 2011: $160
Estimated in 2012: $163
Prevalence: 1 in 110 children age 8 (no total number has been confirmed)
New Cases: 40,000 new cases each year in US

Stroke
Estimated in 2011: $337
Estimated in 2012: $343
Prevalence: 5.8 million in US
New Cases: 500,000 new cases each year in US

Alzheimers
Estimated in 2011: $450
Estimated in 2012: $458
Prevalence: 5.3 million in US
New Cases: 500,000 new cases each year in US


Sources for prevalence information: NINDS, CDC, NIH
Source for funding information: NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) published February 14, 2011.

There are many ways you can make a difference in the fight against epilepsy:

SHARE  Share your story with friends and raise dollars for research by creating your own page on our website.

DONATE  Make a contribution. Every single dollar counts, and brings us closer to a cure!

HOST  Plan an event to raise dollars for research such as joining the National Walk  for Epilepsy.  If walking is not your thing how about volunteer some of your time.

With your help, we will raise awareness and much-needed research dollars, moving us one step closer to a future without epilepsy and seizures.  The statistics don’t lie, helping is the right thing to do.

The journey began . . .
Emergency rooms
Children’s Hospital
Daily Multiple Seizures
Benign Rolandic Epilepsy
Doctors
Blood Tests
Short term EEG’s
Long term video EEG’s
Change in medication
Electrodes
Glue
Itching
Tears
Begging to go home
Daily Multiple Seizures
MRI’s
Cleveland Clinic
Another long-term video EEG
Research
More tears
And more research
EMG
Another change in medication
Daily Multiple Seizures
Pain
And more tears
Bravery
Specialists
This diagnosis
Daily Multiple Seizures
Another change in medication
And this diagnosis
Another change in medication
Specialist in movement disorders
Another long-term video EEG
More Medications
Side effects
Daily Multiple Seizures
Epitologist
Left Frontal Lobe Epilepsy
Fencing stance
Jacksonian marching seizures
Fear
Stress
Anxiety
IEP
And even more tears
Desperation
Daily Multiple Seizures
VNS
Mayo Clinic
Another short-term EEG
More medications
Eye blinking speed test
Involuntary movements
Frustration
Learning Disabilities
This neurologist
And then that neurologist
Children’s Hospital
Daily Multiple Seizures
And more medications
Epilepsy Center
Several short-term EEG’s
Daily Multiple Seizures
Several long-term video EEG’s
Myoclonic epilepsy
And more medications
Cluster Seizures
And more combinations of medications
Non Epileptic Seizures
Still researching

And the journey continues . . .

November is Epilepsy Awareness Month:  Join the Cause
and Become More Aware
November is Epilepsy Awareness Month.

In 2002 I found our 3 ½ year old son having a seizure and not breathing. Then we were off to the Emergency Room. This is how our struggle with Epilepsy began. And since then we have seen many neurologists, endured numerous neurological tests, been on multiple types of seizure medications, had surgery to implant the Vagal Nerve Stimulator device to prevent or reduce the intensity of his seizures.  And now my son still has seizures and is facing serious issues at school as a result of the seizures and the learning disabilities that go along with the disease. 

Unfortunately this is a common scenario for many parents. Epilepsy has little warning. Suddenly a perfectly healthy child is stricken with seizures.  My wish is for a national effort to spread understanding and support for those with this heartbreaking disease and their families.  Before you presume that Epilepsy has not touched your life please consider this:

  • As many as 1 in 100 people have a form of Epilepsy
  • Epilepsy is a neurological disorder
  • Epilepsy effects all ages, races, and countries equally
  • Epilepsy can be caused by strokes, brain trauma, brain tumors or scarring, and infections like meningitis or encephalitis.
  • But more often there will be no clear cause or reason for the patient to be afflicted.

Most people are afraid to talk about their disease due to the stigma of epilepsy.  When most think of a seizure they picture a “Grand Mal” type event. The terminology grand mal is not even used any more.  Often a person with Epilepsy will suffer from other types of seizures. They can range from brief absence seizues which are moments of “blanking out.” Or they could have drop seizures that cause a person to fall violently to the ground. Or they could have myoclonic seizures which are quick muscle jerks.

In most cases epilepsy can be controlled with appropriate medications. When medications fail some will have to resort to surgery. Specially designed diets have also been successful in treating difficult cases.

 Despite how advanced the world has become the stigma of epilepsy still exists. People still have old world ideas about epilepsy. It is my hope that when you think of epilepsy you can imagine the person, not the disease. Let’s change the face of epilepsy.  My son is a  child who struggles every day to overcome a disease that can rob him of his basic ability to learn and thrive. 

Please visit http://epilepsyfoundation.org/ for more information and provide support.

Related Articles

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.