- Share This Post
- submit
- 0
-
Sparkle (0)
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.
In the last three years, I have posted about the significance of National Epilepsy Awareness Month at my daughter's website. 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, and in particular, take time to view the videos of my daughter's seizures from last year.
“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 ...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 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. While the war is hard, there is no time for self pity as every parent needs to keep up the good fight. 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 my Jenelle was having seizures. I thought to myself, "It's so obvious, 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. The most difficult to control seizures for my Jenelle, who literally has each and every type of seizure there is, are the absence seizures, often called staring seizures. I am always more than happy to let a nurse or doctor know when Jenelle is having an absence 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 because they can cluster one after another, giving a child's brain little time to recover. These seizures can also be difficult to recoginze if a parent is frightened by the stigma of epilepsy, and in deep denial.
It took me a long time to finally recognize the subtle ones. 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 an epilepsy diagnosis, 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.
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
