Hi, I’m Lucy R. of Virginia. I’m three, almost four, and I have Dravet Syndrome. I’m sweet and gentle and loving – I like to make sure everybody has a toy when we’re playing, and I don’t like it when anybody is sad. I go give them hugs, even if they’re strangers. (Because I’m at the doctor or hospital a lot, my mommy and daddy frequently have to explain to me that sometimes it’s not okay to walk through a closed door to give a crying kid a hug.) I don’t go anywhere without my stuffed cat Furgus in tow. He’s really special – my daddy gave him to me after a few back-to-back episodes of status when I was having trouble saying what was then my favorite word: “cat.”
I’m kind of a moving target in terms of Dravet. Sometimes things look okay, and sometimes things look really really bad. A few times I almost d-i-e-d. Things are different by day or by hour – I know I keep everyone on my toes. Everybody has to learn how to be really flexible. My doctors and therapists are really wonderful at learning how to deal with me.
Medical cannabis will really help me a lot. It can help me control my seizures without getting me high. I think I won’t need as much medicine, which will be AWESOME. I won’t have to go get monthly labs drawn anymore, which I really hate. But I have to do it because the Depakote I have to take might be damaging my liver and we have to check. I also take Zonegran, and it’s really bitter. I don’t like it at all. I fight Mommy and Daddy when it’s time to take it. It also makes me not want to eat, and that’s a problem. I take these two medicines to control my seizures, and I also have a medical device, a Vagus Nerve Stimulator. They’re a little nervous because we’ve used up five of our “okay” pharmaceutical drugs,* and I’m only three. There’s only a few more left.
I’m so glad I got to meet all of you, and I can’t wait to come give you a big hug in person.
Thanks for letting me play with all of these cool kids on your site, Aunt Nichole.
*Mom’s note: Many pharmaceutical drugs for epilepsy (almost half) are contraindicated for Dravet Syndrome because they will not work or will make the seizures worse.