Posts Tagged ‘Neurological Disorders’

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.

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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.

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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.

November is Epilepsy Awareness Month.  The goal this year is “Get Seizure Smart.”  In support of this effort the following is some information about epilepsy and some personal experiences with my son.

There are many types of seizures which are symptoms of epilepsy  Not everyone’s seizures are the same.  It was just recently that I realized that the different forms of seizures could be completely different things.  The best analogy is cancer; different types of cancer can be completely different from each other.  For example, breast cancer has completely different characteristics as lung cancer.  Well epilepsy is the same way.  I suspect this is why it is so hard to treat. 

 The international classification* of seizures is:

 Generalized Seizures

  • Absence seizures (formerly called petit mal)
  • Myoclonic seizures
  • Clonic seizures
  • Tonic seizures
  • Tonic clonic seizures (formerly called grand mal)
  • Atonic seizures (drop attacks)

Partial Seizures

A. Simple partial seizures (consciousness not impaired)

  • With motor symptoms
  • With sensory symptoms
  • With autonomic symptoms
  • With psychic symptoms

B. Complex partial seizures (with impaired consciousness)

  • Simple partial seizures followed by impairment of consciousness
  • With impairment of consciousness at seizure onset

C. Partial seizures evolving to secondarily generalized seizures

  • Simple partial secondarily generalized
  • Complex partial secondarily generalized
  • Simple partial evolving to complex partial evolving to generalized

 

For example, my son has several forms of seizures.  They include Simple Partial Seizures where he is totally aware of his surroundings as the seizures are occurring.  He has had Complex Partial Seizures where he was not conscious of what is happening.  Some of his seizures have been referred to as myoclonic seizures, which are generalized seizures with brief jerks of a part of the whole body.  His seizures have also been described as Jacksonian March seizures, which are seizures that start in one area, involving one specific muscle group, and then expanding (marching) to additional muscle groups.   These seizures can also be seen as normal movements.   They can occur at no particular moment and last only briefly. In my son’s case the seizures would begin with an eye blinking movement, which turned into head jerks, which turned into full body jerks.  We have also been told his seizures occur in his left frontal lobe.  These seizures would come in clusters which would consist of movements that would happen for brief seconds, pause, and then recur over and over again.  This could go on for 20 minutes and the time period between movements would increase as time went by.  The neurologist also indicated that some of my son’s seizures presented themselves with a fencing posture, which is common with frontal lobe epilepsy. Frontal lobe seizures are frequently mistaken for nonepileptic seizures as they do not necessarily impair consciousness.  Nonepileptic seizures are seizures that are not caused by abnormal brain electrical discharges.  We also have been told that my son has nonepileptic seizures. 

[Take a deep breath.]  The reason I am sharing this information with you  is so you can see how complicated epilepsy can be.  The terminology is confusing and it has changed over time.  A person can also have multiple forms of seizures.  Based on tests, neurologist see and conclude different things at different times.  This whole situation with my son gave me a different perspective of the medical community and how much they do know and how much they don’t know about the brain.  It is a big mystery.  As a result of this, treating epilepsy is a huge trial and error process.  Patients become guinea pigs.

My son’s seizures started when he was 3 ½ years old.  Arriving at a diagnosis took years.  His epilepsy was very unusual and we saw many, many different specialists for about four years.  His case had been presented at neurological conferences for the purpose of obtaining opinions. Over that period of time, my son was on numerous types of antiepileptic drugs, which were really scary drugs – drugs that potentially could have serious, permanent side affects.  In 2004, when my son was 6 years old he had a VNS (vagal nerve stimulator) implanted, which resulted in eliminating his most severe type of seizures.  It was not until 2006 that the neurologist ( this was clinic number four and neurologist number seven) tried a combination of medications that reduced the majority of my son’s remaining seizures.  So now instead of 10 times a day of having seizures, he may only have one or two seizures a month.

Epilepsy is a really tough condition.  Both the patient and their caretakers go through a roller coaster of emotions.  We have to invest the time to educate ourselves.  We invest the time to educate the individuals that interact with our child, such as teachers and school nurses.  We document every little thing that occurs, hoping that it will provide a clue.  We invest time. constantly looking for the next new treatment option or new medical discovery.  We wait, and wait for a cure.  Until then we are at the mercy of the condition, the pharmaceuticals, and the medical community.  It is very frustrating.

*Portions of this blog regarding the types of seizures is from the Epilepsy Foundation of America

 

 

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