November is National Epilepsy Awareness Month!
My daughter Jenelle has many different special needs, the cause of which remains undiagnosed. She also suffers from uncontrolled seizures in the form of Lennox Gastaut Syndrome.
Facts about epilepsy:
- Epilepsy is one of the most common disorders of the nervous system.
- It affects people of all ages, races, and ethnic backgrounds.
- More than 2.7 million Americans of all ages are living with epilepsy.
- Every year, 181,000 Americans will develop seizures and epilepsy for the first time.
- Epilepsy can develop at any time of life, especially in early childhood and old age.
Facts about epilepsy in Children:
Well, I have a whole blog about my special girl so I'll be brief. Three years ago, we were told that if we could not control Jenelle's seizures, she would not live past age 5. Like any parent, we vowed that day to fight this monster that threatened to take our child. The fight has been long and has had many ups and downs, and it continues today.
Jenelle just turned 4 a few weeks ago, and she is doing better than we ever imagined after gaining significant seizure control in July 2005. In fact, last weekend she pulled herself up to stand! She still has daily seizures, but not as many as before. We are very hopeful that Jenelle will have a long and active life, and we are hopeful that she will overcome this devastating condition.
Recently I read an article at the National Epilepsy Foundation website about actor Greg Grunberg (Alias and Heroes) and how his son suffers from epilepsy. The article is very interesting, and Greg really makes you understand what it is like to be a parent to a child with epilepsy. I highly recommend reading the article for a better idea on how epilepsy can affect the whole family. You can find it here.
Seizure First Aid:
Witnessing a seizure is frightening. Witnessing your child seizing is indescribable. Prior to our learning that Jenelle was having seizures, we had absolutely no experience with seizures or first aid for seizures. Now we are old pros and it is really something you just learn by fire so to speak. Often one of the common things I'm asked by many people is "What do I do if I see someone having a seizure?" The hardest thing to do is remain calm, but it is the best and first thing you should do. Make sure the person seizing is comfortable and not hurting themselves (i.e. if they are repeatedly hitting their head on concrete - move them!) Start timing the seizure and wait it out until the seizure stops naturally on its own. If the seizure goes longer than 5 minutes, call 911. And its is just as simple as that!
Here are some "Grand Mal First Aid" seizure things to do:
Links for more information:
National Epilepsy Foundation
More about my Daughter's Epilepsy - Lennox Gastaut Syndrome
I think in order to get rid of the stigma associated with seizures, we need to advocate more about Epilepsy. Thank you for listening and letting me share this information with you!