One day

For most forms of epilepsy the earlier in life the seizures begin the greater the chance that the child will grow out of it. Boys are more likely to have epilepsy than girls. Approximately three-fourths of children with epilepsy can completely control their seizures with medication and 70% of children who have been free of seizures for two years will remain seizure free without medication for the rest of their lives. We're looking forward to just one day without seizures.

We never lose hope because miracles do happen. We've seen it with our very eyes. We've seen Damonito recover when even the doctors have given up. He's been comatose and resuscitated, we've seen the forlorned looks of the hospital staff, they've even called in the chaplan. Somehow he's managed to find his way back.

Nothing out of the ordinary

Damonito has two types of seizures. He has grand mal seizures, which are the biggies but are basically under control with medication. When he's sick or tired he'll still have grand mals. The other type of seizure he has are atonic or drop seizures. These are small seizures that range from the drop of his head to a "full out crash and burn across the living room floor" seizure. They last only seconds but they can be alarming. These drop seizures are not as intense as they used to be nor are they nearly as frequent. Last year before surgery he was having well over 100 per day.

Damonito has an older brother, Joe. Joe knows that Damonito has seizures. He is often protective but on occasion he's used it to sneak a favorite toy from Damonito. "It's giving him seizures, Mom."

YOINK!

It's rare for the family to go out together. It's just hard because anything can trigger the drop seizures. But we decided to go out for lunch one day. We walked into an Indian restaurant, sat down at a large table in the middle of the room. Secured Damonito in the high chair and he had a drop seizure and just planted his forehead on the table with a loud THUD. Everyone in the restaurant looked up and Joe, without missing a beat, held his arms out straight as if to hold back the crowd and said loud enough for everyone to hear,

"It's ok, he just had a seizure. He's ok."

No words are necessary

There is a link between epilepsy and autism. Damonito doesn't have autism but he has autistic tendencies. He has repetitive behavior (he loves to slam drawers and cupboards over and over) and he doesn't talk. However, he's a cuddle bug and he gives great hugs and kisses. When he hugs you he gives you this comforting pat on the back as if to say everything will be alright. Right now he has about a five word vocabulary. He clearly says "up" and "uh-oh" and at the appropriate time without being prompted. He's learning sign language too. He has about five signs: want, more, eat and two others he made up. We're not sure what they mean but he seems to use them at a time that makes us feel like he's swearing at us.

10 fingers and 10 toes

The first thing you do when you have a baby is you count their fingers and toes. I don't know when and where that started but I know I did it when my kids were born and I counted my grandkids fingers and toes when they were born. I'm sure my mom counted mine when I was born. It's just what you do.

Damonito has tried every anti-seizure medication approved for epilepsy by the FDA. And then some. He was on the ketogenic diet, he has a VNS chip, and last summer he had brain surgery, a corpus-colostomy. Two thirds of the membrane that connects the two halves of his brain was severed.

He has 10 fingers and 10 toes.

Beautiful Boy

Damonito has a rare form of epilepsy called Doose Syndrome, which is a form of Lennox Gastaut Syndrome. There is no known cause and the seizures are whole brain, or generalized, seizures as opposed to being focalized in one area of the brain. What makes it severe is that it's difficult to treat because it's resistant to medication and treatment.
Some days are good. Some days are bad. We never know.

Meet Damonito

Damonito is four years old. I call him Damonito because his dad's name is Damon. It's my way of keeping them straight. Damonito is epileptic. He's had seizures since he was 4 months old. His seizures are a daily part of his life. This is his story.