Epilepsy Awareness Month 2013

The time is drawing closer and closer to the month of November and Epilepsy Awareness Month. Epilepsy is a debilitating disease the medical definition for it is as follows:

Epilepsy is a Neurological Disorder that produces sudden brief surges of electrical energy in the brain. These episodes called seizures, may alter a persons awareness, movements, or actions for a few seconds or minutes. Anyone can have a seizure if the brain is stressed by infection, fever, injury, lack of oxygen or poisoning. Seizures that happen more than once for no apparent reason are defined as EPILEPSY. Epilepsy is sometimes called a seizure disorder.

Ask any parent what their definition of epilepsy is they will most likely tell you it’s their worst nightmare and then some! Epilepsy is 365 days a year 24/7 not just once a month but we take the time to have a month such as November to bring about awareness and help educate and share the facts of what this disease is really like and how it affects each family, child and individuals oh so differently. Epilepsy can strike at anytime, anyplace, anywhere. Epilepsy is not gender discriminatory and its not just a local or an American disease it’s GLOBAL!

Here are a few facts that you can read, learn and share about epilepsy and at the bottom I will list some other resources of other organizations worth looking into and supporting as well as the Epilepsy Warriors Foundation. We are all in this as organizations for the greater good of the cause, if your in an organization or run one with the sole purpose of competing with others then perhaps it’s time to take a look in the mirror and see why you have lost your vision, or the mission of why you are in this job because it should not be about competing with anyone it’s not about you it’s about the families, children, those with epilepsy, and or special needs.

More than 3 million people in the United States suffer from epilepsy at an estimated cost of 15.5 billion annually. In the US more than 300,000 people with epilepsy are under the age of 14 and ore than 500,000 are over the age of 65.

Epilepsy gets little funding for research in comparison to Autism, Parkinson’s, MS, Alzheimer’s, though more people are diagnosed with epilepsy than any of these other illnesses. Research funding for epilepsy is about $35.00 per patient compared to $200-400 for the other illnesses.

Sudden Unexplained Death Due to Epilepsy (SUDEP) accounts for 10% of all EPILEPSY related deaths; 85% of these fatalities occur between the ages of 20 t0 50. SUDEP incidence is approximately 1 in 1000 people with epilepsy annually more than 10 times the sudden death rate found in the general population.

When does epilepsy usually begin?

Epilepsy can begin at anytime or life but most often under the age of 17 or over 65.

What causes epilepsy?

More than half the time, no cause can be found. Known causes include severe head injury, stroke, brain tumor, genetic conditions, lead poisoning, problems in brain development before birth, illnesses that affect the brain, like meningitis, or encephalitis or even severe cases of measles.

Is Epilepsy Inherited?

Sometimes. Epilepsy-related genes have been identified for some types of epilepsy, As research in this area continues, new ones are likely to be discovered. However, seizures may also begin when there’s no family history of the condition at all.

Is Epilepsy Contagious?

No. Epilepsy is NOT contagious.

Does it get worse over time?

In most cases, epilepsy does not get worse over time, unless there’s a change in the underlying condition that is causing the seizures. Some children with epilepsy grow out of the tendency to have seizures. Some people find that their seizures go into remission after a period of time. Others may experience periods of sharp changes in how often their seizures occur.

What makes a seizure happen?

Stress and lack of sleep may trigger seizures in people with epilepsy. Certain types of strobes, flashing lights or images may produce seizures in photosensitive people, including some who do not have epilepsy. The most common seizure trigger is missing doses of the medications that treat epilepsy. Often, seizures happen for no apparent reason.

What kind of seizures do people have?

The best known type is a convulsion, also known as grand mal or a generalized tonic clonic seizure. Other seizures produce brief staring, loss of awareness, blackouts, uncontrolled shaking muscle jerks, changes in feeling. The most common type of seizure makes a person lose awareness of where he or she is or what they are doing. Someone having this type of seizure can’t control actions, speech, or movement until it is over.

Do seizures injure the brain?

The average seizure, which lasts only a few seconds or a couple of minutes, does not seem to injure the brain, although many such seizures over a lifetime may have some negative effects. Seizures which last a long time (over 30 minutes to hours) may produce brain damage.

Can people die during a seizure?

It is possible, although fortunately it does not happen very often. Still, there are some serious risks associated with having epilepsy. A seizure while swimming, or climbing, or driving a car could cause serious injury or death. Occasionally someone having a seizure may fall in such a way that breathing is blocked. In rare cases, breathing may not start again after a convulsion ends, in which case CPR should be given. Non-Stop seizures are a medical emergency and may also be deadly if they continue long enough. Also, there is a rare condition called sudden unexplained death in epilepsy (SUDEP), in which the person typically a young adult with hard to control seizures, dies for no apparent reason.

Common Types of Seizure Symptoms

  • Jamais vu (familiar things suddenly seem unfamiliar)
  • Trembling that moves up one side of the body
  • Deja vu (unfamiliar things seem familiar)
  • Smells that are not there
  • People talking, music or sounds when there are none
  • Taste suddenly occurring within the mouth
  • Vortex (Being sucked into a Vacuum or Spinning/Dizzy feeling)
  • Lightheaded
  • Upset Stomach (Turning of the Stomach)
  • Sudden Shifts in Mood
  • Unexplained Anger or fear
  • Disturbed speech
  • Picking at clothes
  • Wandering
  • Lip Smacking
  • Facial Droop
  • Eyes Glazed
  • Eyes Rolling
  • Lack of response to others
  • Repeated phrases
  • Senseless, clumsy movements
  • Lost time
  • Disrobing
  • Being briefly unaware of danger or pain
  • Loss of bowel and bladder control

Do you know what to do if someone is having a seizure?

  • First remain calm and ask others around to do the same. People who are having a seizure can often hear what is happening around them. It can be comforting to hear that  they are ok, and that they are not alone.
  • Look for any identification tags such as an ID bracelet or necklace showing you whether the person has Epilepsy. If they don’t have one and you are not aware that the individual has Epilepsy, call 911.
  • Do not restrain the person, and never put anything inside their mouth. This can actually do more harm than good.
  • Lay the individual on their side so that it helps to clear their airways.
  • Put something soft between their head and the floor so that they don’t bang their head.
  •  Try to time the length of the seizure. This is important information for the Doctors to know.
  •  If someone can video the seizure, this can be very helpful for the Doctor.
  • When they come out of the seizure be comforting and supportive to the individual.
If your new to this epilepsy journey due to being newly diagnosed here are some questions you can ask your Doctor/Neurologist Epileptologist on your first appointment following diagnosis you will also find them on our website so don’t panic if you misplace or lose this post.
Questions For Your Doctor:
The following need to be answered:
  • What kind of Epilepsy is it?
  • Where in the Brain are the Seizures coming from?
  • What can we Expect as far as Seizures?
  • Are their changing types of Seizures based on Diagnosis?
  • What is the outlook for my child?
  • Can or Will my Child Outgrow this Epilepsy?
  • What kind of Outcomes have you seen with my Child’s Type of Epilepsy?
  • Does my Child need to be in an Epilepsy Monitoring Unit?
  • Can you Recommend a Good and Reputable Epilepsy Monitoring Unit if needed?

Questions Regarding Diagnostic/Laboratory Testing

What exactly did the EEG show?

How often should my child have an EEG?

Is anymore Diagnostic Testing such as an MRI or VEEG required?

How often should we have Blood Work done if we are on Medications to check our Child’s liver
and or kidney function?

What is an EEG and What does it tell us?

What is a VEEG and what does it tell us? What are you specifically looking for and expect it to tell us?

What Other Testing is useful? Sleep Studies to check for Seizures while Sleeping?

Questions Regarding Medications

What Medications will my Child be on?
How do these Drugs Interact with one another?
What if any are the Side Effects of these Drugs?
What is the next step if the Medications do NOT control the Seizures?
Will the Medications affect my Child’s Development?
Will the Medications affect my Child’s School Performance?

Questions Regarding Daily Living

Do you recommend a Dietary Vitamin Regimen?
Will my Child be able to continue their currant lifestyle?
Are their any Activities that need to be avoided?
Is their anything that needs to be Modified?
Can you recommend any Parent Support Groups in the Area?
Are their any Child friendly books that can explain to Siblings what is going on?

Questions Regarding Emergencies

What should be done in an Emergency if my Child’s Seizures do NOT stop?
Do I need Emergency Medications on hand?
In an Emergency, What is the Chain of Command? Who do I call first after 911, Pediatrician, Neurologist/Epileptologist?
How do I REACH YOU in an Emergency?

PARENTS I HIGHLY RECOMMEND THAT ALL AND ANY PEOPLE YOU USE OR HIRE FOR BABYSITTERS/CAREGIVERS ARE CERTIFIED AND UP TO DATE IN CPR-MAKE IT MANDATORY!

These are just a few of the many different resources you will find on our website so please if you are not familiar with epilepsy take the time to educate yourself on it and share as you never know whose life one day you may save because you did. Help us advocate be a voice for our children and families TALK ABOUT IT!!!! EPILEPSY does not DEFINE who we are nor does disability mean inability! Remember “Your NOT alone”

For more information and resources on Epilepsy, SUDEP please go to our website www.epilepsywarriors.org

These are a few of  many other amazing organizations available to help you :

http://www.chelseahutchisonfoundation.org/

http://www.dannydid.org/

http://lgsfoundation.org/

http://www.dravetfoundation.org/

http://www.epilepsyfoundation.org/

http://www.sudepaware.org/

http://askdrstein.com/

 https://www.facebook.com/TurningTheWorldPurple

 

 

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