Wednesday, November 01, 2006

November is National Epilepsy Awareness Month!

November is National Epilepsy Awareness Month. Purple is the designated color for Epilpesy Awareness Month.

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:

  • Childhood epilepsy currently affects more than 300,000 American children under the age of 14.
  • Epilepsy may be time limited or long term. Early recognition and treatment are keys to the best possible outcome.
  • The epilepsy may be associated with serious, difficult-to-treat syndromes, including infantile spasms, Lennox-Gastaut syndrome, genetically related conditions, and developmental disorders.
  • Social impact in childhood is often severe, producing isolation and loss of self esteem.

Our Jenelle:

Well, this blog will tell you everything you need to know about our girl. I know many of you know and love her as much as we do. 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 was long and had many ups and downs... and it continues.

Jenelle just turned 4 a week ago, and is doing better than we ever imagined after gaining significant seizure control in July 2005. She still has daily seizures, but not as many as before (20 or so a day instead of 100 or more a day.) 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:

  • Keep calm and reassure other people who may be nearby.
  • Don't hold the person down or try to stop his movements.
  • Time the seizure with your watch.
  • Clear the area around the person of anything hard or sharp.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

Links for more information:

Our Local Support Group - The Epilepsy Alliance of Orange County

National Epilepsy Foundation

More about November as National Epilepsy Awareness Month

More about our Jenelle's diagnosis - Lennox Gastaut Syndrome

Thank you for all your prayers and support for our family. I am quite passionate about educating others about epilepsy because I think talking about it will only create a better world for Jenelle as she gets older. Thank you for listening!

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