November is National Epilepsy Awareness Month. People with epilepsy suffer from seizures, stigma and side effects. Parents of children with epilepsy have to endure frightening seizures, and watch as these thieves steal moments of development from their child. It is a hell no one should have to live through.
This year, I want to talk about the parents role in fighting epilepsy. Please take some time to read my previous posts about epilepsy in honor of National Epilepsy Awareness Month, particularly last year's videos.200720062005
“As parents it was very difficult emotionally to see Jake struggle with epileptic seizures. On top of that, we struggled to find the right treatment for Jake because of concerns about side effects. We knew we needed to do everything we could to find the right medical advice and a treatment that would work for Jake,” said Grunberg. “My wife and I created Hollywood’s Helping Hands because we felt compelled to raise awareness of epilepsy and help other families going through the same thing.”
~Greg Grunberg, actor
These words from actor Greg Grunberg, who is also a parent familiar with epilepsy, ring true to me. Epilepsy is a frightening, emotional, never ending struggle. Parents go through a range of emotions starting with doubt. "Did my child just have a seizure?", "What if the doctor thinks I'm over-reacting?", "What do we do next if this drug fails?", "What have these seizures taken from my child developmentally?", "Will there ever be a day that I don't think of seizures?"
For young infants and children with epilepsy, the parents are their only warriors. Sometimes the parents need to face their own fears in order to help their child. If you lose the parent, you lose the child. Epilepsy plays hard, and often learning about it is a trial by fire. Every moment lost to seizures, is a moment lost in development. There is no time for fear.
When most people think of epilepsy or seizures, they think of "tonic/clonic seizures" aka "generalized seizures" aka "grand mal seizures." These are the scary ones. Where the child is convulsing, shaking and often screaming or making strange sounds uncontrollably. Witnessing this type of seizure is truly frightening. Unfortunately, most of the general public feel that this is the only type of seizure. I myself thought that long ago when our good friend first suggested Jenelle was having seizures. I would know when I see it, right? Not necessarily.
It usually takes a long time for most individuals and even some doctors to learn to recognize the other seizure types. I am always more than happy to let a nurse or doctor know when Jenelle is having a seizure. And many times, that doctor or nurse will admit they had never seen that type of seizure in person. These difficult to recognize seizures are the most damaging. Especially if a parent is frightened by the stigma of epilepsy, and in deep denial.
There are many seizure types. Some that are subtle and some that are quite obvious. Our Jenelle has had each and every type of seizure there is. From the stares to the convulsions. It took me a long time to recognize the subtle ones. And looking back at her older EEG videos that I am preparing to upload, I see now how they were so obvious. Sadly, some parents are so fearful of the scary seizures, they don't want to acknowledge the possibility of other seizure types. These subtle seizures are silent thieves, stealing precious moments of development. We can't let our fear, and the stigma of epilepsy keep us from fighting for our children, like Greg Grunberg, and us.
Briefly, let's look at the Statistics:
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.
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.
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.
326,000 school children through age 14 have epilepsy.
570,000 persons over the age of 65 have 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.Who is most likely to develop epilepsy?
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
These statistics are very real. As parents we need to educate ourselves about seizures, and we need to advocate and fight for our children passionately. And if these words aren't enough, listen to one of the world's top experts in Pediatric Neurology;
"... early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development. Thus, there is the opportunity to have an important impact in the lives of these unfortunate children and their families."
~ W. Donald Shields, David Geffen School of Medicine, UCLA, Head of Pediatric Epilepsy Department at UCLA
Taken from Dr. Shields fascinating article on Infantile Spasms entitled, "Infantile Spasms: Little Seizures, Big Consequences" that
can be found in full here.
If you suspect that your child, or a child you know is having seizures, I urge you to seek out the best doctors in your area. For a child, especially a child with development delays or other issues, moments in development are far too precious to waste. Spread the word.