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WHAT IS PEDIATRIC EPILEPSY?


an image of Mickie and her dad

Epilepsy is a progressive disease that is catastrophic to the developing brain. It is a chronic medical condition that is marked by recurrent seizures. A seizure is an event of altered brain function which is caused by abnormal or excessive electrical discharges from brain cells.

Epilepsy is one of the most common neurological disorders, it affects up to one percent of the population in the US. More than 45,000 children are diagnosed with Epilepsy each year.

The following signs may indicate a seizure:

  • Staring and Unresponsiveness
  • Confusion
  • Jerks and Twitches
  • Wandering
  • Shaking or Falling
  • Picking or Lip Smacking

How is Epilepsy Diagnosed?

Doctors will start by asking if there is any family history of seizures or Epilepsy. They may ask some of the following questions:

  • At what age did the seizures begin?
  • What circumstances surrounded the first seizure?
  • What factors seem to bring on seizures?
  • What is felt before, during and after seizures?
  • How long do seizures last?
  • Has there been previous treatment for epilepsy?
  • Which medications have been prescribed and in what dosages?
  • Was treatment effective?
  • Are there eyewitness accounts from family or friends or video recording that can describe the seizures?

An Epilepsy diagnosis can be confirmed through an EEG. An EEG is a video monitoring of the child’s neurological activity. Electrodes are connected to the child’s head in order to get a clear picture of what is going on inside the child’s brain. The EEG allows the Pediatric Neurologist or Epileptologist to see what the seizures look like and provide the best care for your child. Long Term Video EEG Monitoring is used to evaluate a child’s brain activity and behavioral activity for an extended period of time. This long term video EEG monitoring (LTM) is essential for determining a child’s epilepsy diagnosis, finding where the seizures come from and how it affects other areas of the brain. LTM is the optimal and most comprehensive testing.

A 3 Tesla MRI and a PET Scan may also be conducted for further assessment. A 3 Tesla MRI produces exceptional anatomic detail. The increased image clarity allows for earlier diagnosis and faster and more accurate treatment. It offers an increased level of confidence in diagnosis due to its highly detailed imaging. A PET scan looks at the glucose metabolism in the brain. This allows doctors to see the area of the brain where the seizures are occurring due to the increased level of glucose use in a particular area.

Often times a genetic panel will also be taken. Many genetic disorders are linked to epilepsy. Mickie’s epilepsy is a result of her RARE genetic disease called Koolen-de Vries syndrome. Sixty percent of individuals with Koolen-de Vries syndrome have epilepsy.

Epilepsy Statistics

  • More people live with Epilepsy than Autism Spectrum Disorders, Parkinson’s disease, Multiple Sclerosis and Cerebral Palsy combined.
  • More people died from seizure related accidents last year than Breast Cancer. However, the CDC does not have an accurate mortality rate for Epilepsy related deaths as they get categorized as drowning, choking, suffocation and other.
  • November is Epilepsy Awareness month.
  • One in 26 people will develop Epilepsy in their lifetime and anyone can develop it.
  • What happens in a seizure may look different from person to person. However, each person has stereotypic seizures.
  • 65 million people in the world have Epilepsy. Of those, three million live in the United States.
  • One-third of people with Epilepsy live with uncontrollable seizures because no available treatment works for them.
  • Six out of 10 people don’t know the cause.
  • Epilepsy is the third most common neurological disorder behind Alzheimer’s and stroke.
  • Children and seniors have a higher risk of developing Epilepsy. Thirty percent of those diagnosed each year are children.
  • The Federal Government spends much less on Epilepsy compared to diseases that affect fewer people. The National Institute of Health (NIH) spends $30 billion on medical research.  Only half of one percent is spent on Epilepsy research.
  • You CAN die from Epilepsy. Up to 50,000 people die from Epilepsy each year.  There is a risk of death associated with increased frequency of convulsive seizures. People who have three or more Generalized Clonic Tonic Seizures per year have a 15 fold increased risk of Sudden Death in Epilepsy (SUDEP).

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