Tuesday, November 01, 2005

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.


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:


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


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.


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.”


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 (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!


Anonymous said...

Hi, I found your blog through another blog when you wrote about how Jenelle's epilepsy has changed your life. I just wanted to write to say that my fiancee and my best friend both have epilepsy. My fiancee's epilepsy is completely controlled, but my friend's is not, and never will be. She will never drive a car.

I think it is great that you keep this site so other people whose children have the same disability as Jenelle can find it and take hope. I wish you all the best, and just wanted to let you know that I appreciate the sentiment that awareness of epilepsy should be spread.

Anonymous said...

Hi Kelly!
I found your site when looking for some information on LGS for my daughter's teacher. I wanted to share my daughter's story and would love to talk/email you!! Haily is going to be 11 in June and doing so well!! Here is her story:
Haily Jo Krause was born on June 28, 1995 at a whopping 7 pounds 10 ounces. Despite a little jaundice, she was the picture of health. She was also the happiest baby, always smiling. She slept very well, loved everyone and everything and was content in any situation. She was more than a mother could ask for.

However, the joyful times would soon come to an end. At the very young age of 6 months old, Haily suffered her first absence seizure. Though, at that time, Doctors thought it might be simply infantile spasms that she would outgrow. This, for quite a few months, seemed to be the case. All the tests that were completed came back normal and long term monitoring was the same. It appeared it was just “One of those things”.

However, by the time Haily reached 15 months old, the seizures had returned, and it seemed they were making up for lost time. She began having 2 to 5 Tonic-Clonic seizures daily, not too mention that the absence seizures were also back. This tiny little body was being controlled by seizures, and there didn’t seem to be anything we could do.

After the first initial Emergency Room visits to Children’s Hospital, it was suggested that Haily begin seeing a neurologist. We scheduled the first appointment immediately and Haily was put on Phenobarbital, after unsuccessful use of Dylantin.

For a while the Phenobarbital seemed to work. Every once and a while Haily would have an absence seizure, but it never seemed to debilitate her. She was functioning at a normal 1-½ -2 year-old level and was the happy child that she had always been. Yet again, things seemed to looking up.

Unfortunately, that was not the case. By the age of 2, Haily’s seizures had returned once again and this time, more severe, more frequent, and more seizure variances. She was now suffering with not only the Tonic-Clonic and Absence seizures, but now she was experiencing Myoclonic, A-Tonic, Simple Partial, Complex Partial and on and on. She was seizing anywhere from 4 to 400 seizures a day in various forms and severity. Her breathing would stop, her muscles would give out, and she would be in a comatose state almost all the time. It was back to the Neurology clinic for some help.

It was at that time that we were told that Haily had what was called Intractable Epilepsy. Furthermore, Haily was also diagnosed with Lennox Gastaut Syndrome, which, upon research, gave us little hope that she would ever have a “normal” life. What’s more, Haily was no longer progressing developmentally. Between the seizures and the many, many, medications, her poor little brain just could not keep up. She had taken one medication after another, tried a steroidal injection, got the Vagal Nerve Stimulator implanted-twice (due to a defective device the first time), and then repeated medications once again.

This was a cycle that was repeated for the next four and a half years. Her developmental level remained at the 2-year mark, though physically she was 6. I wracked my brain trying to think what could help my little girl. I came across the drug Lamictal, one that was tried before, but Haily developed an allergic reaction to. It turned out that pushing the medication too fast caused the reaction. It was a risk to try it again, but with all the findings on its effect with Lennox Gastaut, I felt it was our only option.

It was in 2002, when Haily was about to turn seven, when we met Dr. Mary Zupanc, the Doctor that would change Haily’s life. Upon our meeting her she asked what we would like to do to treat the seizures. I told her all I wanted was Haily to have a quality of life that she had not ever had before and with the many medications, that didn’t seem to be an option. I wanted to strip the 3 medications that Haily was currently taking and start from scratch with Lamictal. Surprisingly, Dr. Zupanc agreed and in August 2002, Haily was admitted to Children’s Hospital for long term monitoring and removal of medications.

That was a little more than 3 1/2 years ago and now and I am proud to report that Haily has not suffered any seizures, except A-Tonic, which is a vast improvement. Additionally, Haily has gained enormous strides in her development and is currently at a 4 year old level developmentally, further in such areas as social development.

Someone once said to me, after hearing Haily’s story, that she felt so bad for me. “Me” I asked. “Don’t feel bad for me, I am not fighting seizures off daily or traveling this horribly painful journey”. I have been blessed with an angel who came into this world with a smile and never questions why children don’t want to play with her or curse the world for her struggles. I have a child who loves life and all people in it and that is what a true miracle is, My Haily Jo”.

Though Haily is doing much better than she is suppose to be doing...much like you..we'll take it!! She is now reading some words and working on math!! Miracles DO happen!!
I'd love to hear from you!!

Anonymous said...

Hi janelle's mommy. I'm joshua's mommy. And a quick look tells me that we have some things in common. Joshua too started with IS and I think he now has LGS (his Dr isn't sure what he has). I hope Janelle is healthy and happy. I hope you are too. Too often we forget to take care of ourselves in this crazy world.