November

There are a lot of things that come to mind when I think of November, my birthday, Jackson's birthday, Thanksgiving, the hope of snow, to name a few. November means something else to 3 MILLION Americans, Epilepsy Awareness Month.

Just a few years ago, we never gave second thought to seizures or epilepsy. Sure, I knew a few people that had Epilepsy, but I didn't think much of it. Then came Kade. Kade was a great baby, with few issues. We noticed that he was having a hard time holding his head up on his own, but we were giving him time. We started asking his Dr about therapy to help gain some muscle strength in his neck. We even scheduled therapy sessions. On the day that he was to have his first therapy session, something happened. It started very small, and hardly noticable. My mom was watching Kade for the morning and she was getting him ready for a nap. He was just about asleep when he got a strange look on his face and his hands started to twitch. My mom couldn't make his hands stop twitching and she could get him to react to stimulus. She called me, thinking he might have had a seizure. I quickly called Kade's Dr, and he wanted to see him right away. We saw the Dr. and he told us to goto Children's hospital right away because he thought Kade did infact have a seizure.

Over the course of the next 3 weeks we were students of the human brain, genetics, and became fluent with medical terminology. None of which I wanted to do, but we were thrown into this without choice. Kade had more tests done on him in a 3 week period than most people have done in a LIFETIME. At the age of 5 months he was having a MRI, CT, and multiple EEG's done. All the while still having seizures, uncontrollable seizures, that might last 2 minutes, and the longest lasting 15 minutes.

Kade was discharged and was seizure free for several months, but the seizures returned. Again, they were uncontrollable. Medicine was add, removed, increased, and decreased desperately trying to control what was going on.

We have ups and downs as a family, and Kade has ups and downs as his Epilepsy is concerned. Epilepsy is a very cruel and mean condition. Each time I see Kade have a seizure it feels like someone has punched me in the stomach. I would never wish this condition on anyone.

People with Epilepsy can have happy, productive lives. Others have more difficulty controlling their seizures and therefore make their lives harder. Medications work well controlling seizures for some people, while others are not as lucky. Unfortunately not a lot is known about Epilepsy and the brain. Thankfully there is research happening that is leading to new medications and new treatment procedures.

On December 5th the St. Louis chapter of the Epilepsy Foundation is holding it's Epilepsy Awareness Walk. We will be walking with other St. Louisians affected by this condition. If you would like to join us please let me know. We are calling ourself's "Kade's Krewe". Also, if you are so inclined, you can make a donation to the St. Louis Epilepsy Foundation via this website.

If you would like to read my blog entries from those 3 weeks of hell go here.