Dravet Syndrome Stories From Those Who Know

Jarod was only 4 months old when we became aware of his seizures, he must have been having little jerks called myoclonic seizures for a while before that but we happily dismissed them for the normal strange baby movements that occur in most infants. There was certainly nothing normal about his first big seizure however and it was far less subtle.

In my notes I describe the first big seizure as punching out movements but just down one side, then the other side and so on. This lasted for at least 20mins, I'm not sure I was as scared as I should have been, I think I was in shock. The little monkey must have been concious for at least some of it because he would look up at me whilst these punching movements where happening and smile. All I could think about is how in this world could you still be smiling, but that's pretty much the sort of kid he is. Even amongst all the termoil he could manage to make me feel better. It surely couldn't be that bad.

After it was dismissed as a likely one off event we were sent home. He would have another big seizure a few months later and many many more over the coming years. Seizures by the dozens and almost every seizure type imaginable. Shortly after his first big seizure the myoclonic seizures started to come on thick and fast and by his 5th month he was on Epilim and has been taking anti-epileptic drugs of various kinds ever since.

It took some 5 or so years to finally get the diagnosis of Dravet Syndrome, after much research and self diagnosis the doctors finally came around to the same conclusion I (Jarod's mum) did. It was a good time to be more knowledgable on the topic of Dravet's as the SCN1A testing was in research phase and luckily Jarod was included and found to have a mutation. You know as hard as it is to have a diagnosis, it's so much worse not knowing. Both his mum and dad are negative for the SCN1A mutation.

Updated (2016):

After a fantastic 17 months seizure freedom the drought broke on October 2008, likely due to reducing his drugs in the hope of improving his appetite. Eight years on we see about 3 nocturnal seizures a week. Development remains the same (assessed at about 15 months globally), somewhat short of his 18 year old body, but he's a happy soul and after all isn't that all we want for our kids.

Jarod's story can be found on their website: Shazza's: Dealing with Dravet Syndrome