Resources / Education

Demographics

 

Incidence*

  • Each year, approximately 150,000 or 48 out of 100,000 people will develop epilepsy.
  • The incidence of epilepsy is higher in young children and older adults. This means that epilepsy starts more often in these age groups.
  • 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.

 Prevalence*

There are many different estimates of the prevalence of epilepsy. These numbers vary depending on when the studies were done, who was included and a host of other factors.

  • The number of people with epilepsy ranges from 1.3 million to 2.8 million or 5 to 8.4 for every 1,000 people.
  • The estimate currently thought to be most accurate is 2.2 million people or 1 for every 1,000 people.
  • However, higher numbers of people report that they have active epilepsy, 4 out of 1,000 people.

Florida

  • It is estimated about 400,000 persons in Florida have epilepsy.
  • It is estimated about 60,000 persons with epilepsy live in West Central Florida and 16,000 of these individuals are children, teens and young adults.

What is Epilepsy?

Epilepsy (seizure disorder) is a neurological condition which affects the nervous system.  It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition.

What are Seizures?

Seizures seen in epilepsy are caused by disturbances in the electrical activity of the brain. The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown.

Local

ESF Caring For Families Resource Guide –  Crisis Center of Tampa Bay Community Resource Guide
Pediatric Epileptologist

Pediatric Epilepsy and Neurology Specialists
Florida Comprehensive Epilepsy & Seizure Disorders Center
Maria Gieron, M.D.
Daniel Cabello, M.D.
Eric Vernier, M.D.

Pediatric Neurologist
Jose Foradada, M.D.
Sergio Jacinto, M.D.
Richard Gunderman, M.D.
Ernesto Millan, M.D.
Radhakrishna Rao, M.D.
Raymond Fernandez, M.D.
Joseph Casadonte, M.D.
Ena Andrews, M.D.
Musarrat Qureshi, M.D.
Eberto Pineiro, M.D.
Robert Eanett, M.D
Terry Hostler, M.D.

 

813.903.9200      Tampa – Directions
813.259.8717      Tampa – Directions
813.259.8717      Tampa – Directions
727.443.3295      Clearwater – Directions
727.767.8181      St. Petersburg – Directions

813.874.2000      Tampa
813.876.4100      Tampa
813.879.7816      Tampa
813.448.6755      Tampa
813.876.3783      Tampa
813.878.2191      Tampa
727.892.4149      St. Petersburg
727.498.8994      St. Petersburg
863.687.1600      Lakeland
863.680.7300      Lakeland
863.647.8012      Lakeland
863.293.2107      Winter Haven

 

The Parker Lee Project

ESF Recommended Project: Here is a resource some parents may need for some supplies not necessarily covered by insurance.

The Parker Lee Project knows how hard it is to get all the supplies and equipment you need for a special needs child, especially the ones insurance deems a ‘luxury,’ although actually essential. The Parker Lee Project also knows the struggle it is to find agencies to help get these items or the therapies needed for your child. The Parker Lee Project has learned more than our fair share through diligent research, caring for Parker and being a support to friends and their children as well as their support of us. The Parker Lee Project wants to help as many families and children as possible. The life of a special needs parent is already hard enough. It’s a constant fight and battle for survival and to get the things your child needs and deserves. The Parker Lee Project wants to help make it a little easier.

Supplies Offered:

Enteral Supplies (feeding bags, extenders)

* Trach Supplies (care kits, ties, cleaning supplies, HMEs); * Incontinence Supplies (different size diapers and briefs)

* Oxygen tubing and cannulas; * IV tubing and care supplies; * Formula

* General Supplies (Gloves, Alcohol Prep Pads, Medical Tape, 2×2 and 4×4 Gauze Pads)

* Diabetic Supplies; * Suction Catheters (ALL different styles and frenchs)

* Mouth Care (toothettes, oral swabs)

Transportation Options

In addition to using a car, bus, train or bicycle, there are other transportation options for persons with epilepsy in the West Central Florida area.

Uber has a rideshare app.  There is a low cost: about $5-7 to ride almost 3 miles. Ask you doctor if they offer UberHealth.

Lyft has a rideshare app.    The cost: $0.90/mile plus a service fee of $1.90.  Minimum fare is $3.50. Ask your doctor if they offer Lyft Concierge.

TBARTA is a carpooling service.  This ride sharing company is only for persons employed and who need transportation to and from work.  A person receives a personalized computer match-list of persons who live and work near the person needing this service.  Cost is determined by the company.  You register on-line: www.tbarta.com/en/carpooling/commuter/carpool  You can also call TBARTA for information at 1.800.998.7433.

Carpool World is another carpooling service.  It is similar to TBARTA except that the cost is decided between the persons and not the company.  You register on-line: https://www.carpoolworld.com

What is Epilepsy? What are Seizures?

Epilepsy (seizure disorder) is a neurological condition which affects the nervous system.  It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition.  Epilepsy affects every person differently depending on age, types of seizures, response to treatment and whether or not the person has other health issues, etc.    Epilepsy affects persons from all communities, many of whom do not have any family history of seizures.

Seizures seen in epilepsy are caused by disturbances in the electrical activity of the brain. The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown.

Diagnosis & Treatment

While the diagnostic process will vary for each person, the major steps in the process should include:

  • Detailed medical history – may include questions regarding the mother’s pregnancy and delivery, any relatives with epilepsy, and whether the person had a high fever, serious head injury and/or periods of staring, inattention or breath-holding.
  • Detailed account of seizure – the person(s) who was present at the time of the individual’s seizure is advised to communicate what (s)he saw with the doctor.
  • Physical examination – the exam may include assessment of cardiac, neurological and mental status.
  • Blood test – a blood test(s) may be ordered to identify potential causes and/or identify other significant illness(es).
  • CAT (Computerized Axial Tomography) or CT Scan – may be ordered to determine whether a seizure has been caused by an acute neurological lesion or illness.
  • EEG (Electroencephalogram) – shows the brain wave activity that can be used to assess the risk of seizure recurrence, and it may also help determine seizure type.
  • MRI (Magnetic Resonance Imaging) – a preferred brain picture when evaluating persons with new onset seizures or seizures that may have started in a particular area of the brain.

There is not one best treatment for epilepsy. There are, however, a number of treatment options available:

  • Medications – the most common treatment option. There are more than 30 medications used to treat generalized and partial seizures. Doctors will work with their patients to determine the best medication option(s).
  • Ketogenic Diet – a strict diet that helps stop or control seizures for some persons (usually children under the age of six). This diet must be closely supervised.
  • Vagus Nerve Stimulation (VNS) – a small battery implanted under the skin in the chest wall that sends small, regular bursts of electrical energy to the vagus nerve, a large nerve in the neck that leads directly to the brain.
  • Surgery – this option is most commonly used when the brain tissue causing seizures is confined to a small focal area of the brain, which can be safely removed without damaging function.
  • Biofeedback – is used to help modify seizures by slowing one type of brain activity, while increasing another.

The goal of all epilepsy treatments is to STOP THE SEIZURES with as few side effects as possible.

Types

Generalised Onset seizures

In these seizures abnormal electrical activity affects both sides of the person’s brain and they may lose consciousness, sometimes so briefly that no one may notice. What symptoms are seen depend on whether it is a generalised non motor or generalised motor seizure.

  • Generalised Non Motor Seizures include typical and atypical absences.
  • Generalised Motor Seizures include tonic-clonic, tonic, clonic, atonic, and myoclonic.
  • Absences are staring spells lasting only seconds but consciousness is lost briefly.
  • Tonic-clonic seizures have loss of consciousness and convulsive movements of the limbs. This is the type of seizure that most people think of when they think of epilepsy.
  • Myoclonic seizures involve brief jerking of the whole body, or more often the arms or legs, but not always loss of consciousness.
  • Atonic seizures are also known as drop attacks where the body suddenly loses tone, goes limp and falls to the ground.
  • Tonic seizures involve stiffening of the whole body and the person will fall if not supported.
  • Clonic seizures involve the jerking phase of a seizure by itself where the limbs may jerk without the tonic or stiffening phase happening first

  Focal Onset

  Focal (formerly partial) seizures start in one part of the brain. Focal seizures divide into:

  • Focal Aware (formerly Simple Partial) – the person may experience a range of symptoms including déjà vu, jerking movements, a taste or smell.
  • Focal Impaired (formerly Complex Partial) – awareness is affected to some extent, symptoms vary. There may be confused behaviour and wandering.
  • Focal to Bilateral Tonic Clonic (formerly Secondary Generalised) – seizures start in one part of the brain and spread to affect both sides to become a full tonic clonic seizure.
  • Focal seizures may or may not affect consciousness (aware or impaired) and may or may not affect movement (motor or non motor).

Unknown Onset

Where the area the seizure starts in is unknown. These may either have Motor or Non Motor symptoms.

Key Points about Seizures

  • A single seizure may not be epilepsy.
  • In seizures consciousness may be lost fully, partly or not at all.
  • Seizures vary greatly between people.
  • Most major seizures last from 1-3 minutes.
  • Triggers include excess alcohol, skipped meals and missed sleep.
  • Absences are staring spells often mistaken for daydreams.
  • Some seizures feature wandering, confusion or agitation.
  • Prolonged seizures are treatable with emergency medication.
  • Seizures occur when normal brain activity is briefly disrupted.
  • Our brains work on electrical impulses.
  • Too much electricity can lead to seizures.
  • Seizures are short and usually stop naturally.
  • Not all seizures are the same.
  • Not all seizures are due to epilepsy.

Seizures+Triggers

Service Dogs & Devices

Epilepsy Service Dogs and Training

          • Canines 4 Hope – Palm City, Florida
            1.855.885.6262
            Provides dog and dog training Cost: $10,000
            Family must fundraise the money or pay the money



          • 4 Paws for Ability – Xenia, Ohio
            Process: Apply and interview, enter a contract, fundraise to pay for dog, class placement and service dog training, uniting client and service dog

          • Pendragon Acres – 15006 Eckerley Drive, Brooksville, FL. 34614
            Process: Call 352.596.3414.  Pendragon trains German Shepherds as service dogs.  They match the dog to your needs.  Please let owners know you were referred by Amanda & Joey Vega.
            Cost: Unknown


          • Inghram’s Sit ‘N Stay Dog Academy – 10401 Wilsky Boulevard, Tampa FL. 33625
            Process: Call 813.961.0052.  Inghram’s trains service dogs. The academy is APDT certified and associated with Paws for Hope, a program that trains dogs for disabled veterans.
            Cost: Unknown


          • Kids and Canines – Dorothy Thomas Center – Tampa FL. 33618
            Process: Call 813.558.5406.  This is an assistance dog training program, gives middle school teens a new “leash” on life. Each student is paired with a dog in order to train the dog to be a helpmate to an individual with disabilities, or a child with autism.
            Cost: Unknown

Seizure Detecting DevicesEmpaticaEmpatica – The Embrace wristwatch was developed by Empatica, Inc.  The watch is able to detect seizures in persons with epilepsy and can alert a smartphone app or a “companion” watch worn by a parent, spouse, roommate, or anyone who will be close to the wearer when seizures are likely to occur.  The watch also measures stress levels which can trigger seizures.

Smart WatchSmartWatch – an easy-to-use, non-invasive wristwatch that continuously monitors movements and instantly alerts family members and caregivers upon the onset of repetitive shaking motion.  When the SmartWatch detects repetitive shaking motion, it signals the user’s Android phone to send text and phone call alerts to whomever the SmartWatch user designates.

Sami Smart Activity Monitor  –www.samialert.com  Cost: Sami Video Camera only: $399.00  Standard Sami  Kit: $899.00 includes video camera, wireless router & pre-configured 5th generation iPod with 16GB storage  JB Edition Sami Kit: $949.00 same as Standard but has 32GB storage

SeizureTracker –  seizuretracker.com Empowering people living with seizures to play an active role in their own healthcare.

Emfit Movement Monitor  www.emfitcorp.com  Cost: $600.00  Detects when a person has continuous quick-paced movements over a preset period of time.  Monitor has an optional wireless plug-in remote alarm for $40.00