Seizure Disorders, Connecting, and TalkAboutIt.org

I have not mentioned that in addition to Ella's Apergers and Sensory Processing related diagnoses, she also has an "unspecified seizure disorder" that started in toddler hood. She has been seizure free for about 4 years, which is AWESOME, but by no means do I assume that her seizures will never return. She had fewer than 10 total in the course of 3 years. Three were simple partial with secondary generalization seizures, 2 were complex partials, 2 were grand mal/tonic clonic, and 1 was a series of myoclonic seizures. Because her EEGs and MRIs (even 24 hr video EEG and 48 hr take home EEG) never showed any activity, they told us that her seizure activity must be too deep in the brain for them to pick up. It was very disconcerting. Through all that testing, we found that she had a myelin deficiency, which may or may not contribute to her sensory issues and her being on/near the autism spectrum.

It is an unspeakably frightening thing to watch your child having a seizure. You never know how long it will last, sometimes they cannot tell you afterward how they are feeling because of garbled nonsense speech or lack of ability to speak, and many times there is no memory at all of events leading up to the seizure or of the seizure itself. It is one of those totally powerless parent moments where you watch and pray. I was blessed to have majored in Special Education and Psychology in college, and had some familiarity with seizure types when Ella started at 14 months. It did not make it less scary, but having that knowledge from school did make it less intimidating.

Last night, I had a friend on twitter whose child had a seizure. Her daughter had been diagnosed as having absence seizures already, but this was a new kind of seizure and it terrified her mom. I knew about these different types, and was able to explain and reassure to her that the kind her daughter had experienced was a complex partial seizure, and describe the impaired consciousness that my daughter had experienced when she had hers as a preschooler. It reinvigorated my desire to research and help others connect on the subject of epilepsy.

Which, very happily, leads me to talk to you about Greg Grunberg, one of my favorite celebrities. Greg has done work on movies as well as tv shows, but I first discovered him in Alias. I was thrilled when he showed up in Heroes, which is probably my favorite tv show. Greg is also in a really AWESOME band called Band from TV . The lineup is mindblowing: Hugh Laurie from House on piano, Greg on drums, Teri Hatcher on vocals, Bob Guiney from the Bachelor on vocals, Jesse Spencer from House on violin... The band plays gigs to raise money for charities, and Greg's charity of choice is one close to his heart, The Epilepsy Foundation . Greg's son Jake has epilepsy, and he has further created this fabulous website called Talk About It . While its focus is definitely epilepsy, the encouragement is there to talk about special needs. Talk about disability/different ability. Take away the fear and normalize these conditions so there is less misinformation, less looking out of the corner of the eye, less whispering while staring. I would encourage you to check out Band from TV and Greg's website. He is a multi-talented guy with a huge heart, and is working so hard to make the world a more accepting place for his son.

My daughter, Ella, would recommend two books on the subject of normalizing special needs: Don't Call Me Special and All Cats Have Asperger Syndrome

I would love to hear from you, and please pass my post and its information on to anyone you know who has a child with epilepsy!