PHOTO: Meghan Wilson and her daughter, Vivian, who suffers from Dravet Syndrome.
“A little less panicky, but more tired than ever before. So violent with biting, hitting and scratching, ripping the leads off, and just wanting to crawl out of his skin with not being able to sit still…. No sleep for either Jaxs or I. Every time he fell asleep, then 20 minutes later a seizure. So, he fought sleep and had that panicked ‘I am dying’ fear in his eyes that expressed so much confusion and loss at what was happening. Most helpless I have felt so far in 14 years.”
-From the journal of Jennie Stormes
The words are chilling, heartbreaking, every parent’s worst nightmare. Jaxs has Dravet Syndrome, a rare, incurable form of severe childhood epilepsy.
But the symptoms Jennie describes are not from Dravet Syndrome itself – they are symptoms of withdrawals from one of the dozens of drugs her son Jaxs has been prescribed over the past 14 years to treat Dravet.