Jenelle's Journey

November is Epilepsy Awareness Month!

The chosen color to represent the fight to find a cure for Epilepsy is purple. We encourage you to wear a purple ribbon, a lavender awareness band, or Jenelle’s bracelet during this month to help increase awareness against this condition that affects so many lives including ours. And if you have the means, we encourage you to make monetary donations to an organization called the Epilepsy Alliance of Orange County, (please send an email to JannaEpilepsyOC at aol dot com if the link is not working) the organization that directly supports our family and Jenelle. If not a donation to the EAOC, please donate to the Epilepsy Foundation or your local Epilepsy support group.

Here is some information that I shamelessly stole from the Epilepsy Foundation website to help further educate everyone about Epilepsy, and about Jenelle’s specific type of Epilepsy.

WHAT IS A SEIZURE?:

A seizure happens when the electrical system of the brain malfunctions. Instead
of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and massive contractions of the muscles. But if only part of the brain is affected, it may cloud awareness, block normal communication, and produce a variety of undirected, uncontrolled, unorganized movements. Most seizures last only a minute or two, although confusion afterwards may last longer. An epilepsy syndrome is defined by a collection of similar factors, such as type of seizure, when they developed in life, and response to treatment.

From this mixture of sources, leading experts in the field have arrived at the following estimates of the incidence and prevalence of seizures and epilepsy in the United States:

THE STATISTICS:

Incidence -- Seizures:

300,000 people have a first convulsion each year.
120,000 of them are under the age of 18.
Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

Incidence -- Epilepsy:

200,000 new cases of epilepsy are diagnosed each year.
Incidence is highest under the age of 2 and over 65.
45,000 children under the age of 15 develop epilepsy each year.
Males are slightly more likely to develop epilepsy than females.
Incidence is greater in African American and socially disadvantaged populations.
Trend shows decreased incidence in children; increased incidence in the elderly.
In 70 percent of new cases, no cause is apparent.
50 percent of people with new cases of epilepsy will have generalized onset seizures.
Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.

Prevalence -- Epilepsy:

Prevalence of active epilepsy (history of the disorder plus a seizure or use of antiepileptic medicine within the past 5 years) is estimated as approximately 2.7 million in the United States. Prevalence tends to increase with age.

326,000 school children through age 14 have epilepsy.
570,000 persons over the age of 65 have epilepsy.
Higher among racial minorities than among Caucasians.

Cumulative incidence (risk of developing epilepsy):

By 20 years of age, one percent of the population can be expected to have developed epilepsy.
By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.

Epilepsy risk in special populations:

The basic, underlying risk of developing epilepsy is about one percent. Individuals in certain populations are at higher risk. For example, it is estimated that epilepsy can be expected to develop in:

10 percent of children with mental retardation
10 percent of children with cerebral palsy
50 percent of children with both disabilities
10 percent of Alzheimer patients
22 percent of stroke patients
8.7 percent of children of mothers with epilepsy
2.4 percent of children of fathers with epilepsy
33 percent of people who have had a single, unprovoked seizure

Remission:

70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.

35 percent of people with mental retardation, cerebral palsy, or other neurological condition will enter remission.

75 percent of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication.

10 percent of new patients fail to gain control of seizures despite optimal medical management.


How Epilespy affects our daughter Jenelle:

Jenelle’s type of Epilepsy is considered to be in the category of “Devastated” Epilepsy.

DEVASTATED:

Children and adults whose lives are devastated by epilepsy are likely to have epilepsy as a result of brain disease or injury that also impairs learning, memory, attention, and motor and emotional function. Their seizures probably started early in life and may never have been controlled despite the use of multiple medications and combinations of medications. They are likely to be heavily medicated; they may experience some retardation or slowing; have difficulty in maintaining family support and social relationships; require help in everyday living; and may be more susceptible to bouts of continuous seizure activity (flurries) and status epilepticus. People of all ages in this category have a lifelong need for services and are substantially limited in their ability to function independently.

The risk of seizure-related deaths is increased among people with poor seizure control and other neurological problems; sudden unexplained death occurs across all three groups.

Jenelle's seizures are most likely caused by something metabolic in nature and/or some type of birth defect or problem (ie: loss of oxygen or infection) that occurred very early during her development in the womb. Although she looks quite "normal" in photographs, Jenelle is severely mentally retarded and will always have seizures. This is not something she will simply “grow out of.”

Jenelle’s seizures began around the age of 8 months as something called “Infantile Spasms.”

INFANTILE SPASMS:

West syndrome and infantile spasms are two conditions which occur together so
frequently that the two terms are used interchangeably. West syndrome involves
developmental arrest and possible loss of developmental milestones and has a
distinctive EEG pattern called hypsarrhythmia.

Infantile spasms are clusters of brief seizures involving various combinations of flexion and extension of the trunk and limbs, most common in the early morning or upon wakening from naps. In the most common form, the body bends as the outstretched arms jerk forward -- so called "salaam seizures. The condition is often mistaken for colic, at least initially, because the babies double up during the spasm and cry afterwards.

Eighty-five percent of children who develop infantile spasms do so before the age of 12 months; most stop having spasms by age 5. During this period, 40 percent will have other types of seizures.

The most common causes are tuberous sclerosis and perinatal asphyxia (lack of oxygen). In 40 percent of cases, there is no known cause and these children have the best prognosis; causes that are symptomatic have the worst. As many as 20 percent die before age 5; 75 percent are mentally retarded; and more than 50 percent have persistent epilepsy, half of whom develop Lennox-Gastaut syndrome.

And sometime at around age 18 months, she was diagnosed with "Lennox Gastaut Syndrome":

LENNOX GASTAUT SYNDROME:

Lennox-Gastaut syndrome (also known as myoclonic-astatic epilepsy) is a combination of seizures usually including atypical absense seizures (starting
with automatic behavior without conscious control); tonic seizures (stiffening)
atonic or astatic seizures (drop attacks); mental retardation; a distinct slow spike-and-wave EEG; and onset between 1 and 5 years of age.

Some children are developmentally normal when the syndrome begins, but then lose skills, sometimes dramatically, in association with uncontrolled seizures. By age 6 most children with Lennox-Gastaut have some degree of mental retardation.

Children with Lennox-Gastaut syndrome typically have more than one type of seizure. The atonic-astatic (drop attack) seizures are most troubling because of the injuries caused by repeated falls. Many children wear protective helmets. The tonic (stiffening) seizures are most common during sleep, including nap time, whereas generalized tonic-clonic seizures (convulsions) occur most often on awakening.

Some of these children are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness. This requires medical intervention to bring it to an end).

As children with Lennox-Gastaut syndrome grow older, the types of seizures change. In most cases, the drop seizures abate. They are replaced by partial, complex partial, and secondarily generalized convulsions. Among teenagers with Lennox-Gastaut, complex partial seizures are the most common form.

This seizure syndrome is difficult to treat and often does not respond to the usual seizure medications. Other treatment choices may include the ketogenic diet, vagus nerve stimulation therapy or occasionally corpus callosotomy surgery.

Please "Think Purple" in November and try to spread the word about Epilepsy. Our daughter's case is one of the more devastating, however there are many people who are affected by Epilepsy and still manage a fairly "normal" life. Those with the occasional seizure also deserve a cure. Many do not have the freedom to drive, teens are often teased, and students have a hard time functioning in classrooms. Independence is a very foreign concept for anyone with Epilepsy because there is always the risk that a seizure will happen.

The spectrum of individuals who are affected by Epilepsy is wide; our Jenelle just happens to be on one extreme end of the spectrum. Because of this, we feel compelled to share her story in order to increase awareness for all.

Again, we thank you for your prayers and support!