Major Med Change

Giovanni has been on a drug called Topiramate for more than 2 years. We considered it his base drug - we thought it was working because it limited seizures and whenever we added new ones, nothing changed. Gio has always been on 2 to 3 seizure drugs at a time...it's the way doctors try to battle the Lennox-Gastaut. But, none of the combinations have worked, obviously. So, now that Gio is only having the large tonic seizures, the doctors have decided to change to a new drug and remove Topiramate.

We are waiting to see a change.

While the small, constant myoclonic seizures are gone, the tonic seizures are getting longer. He's not breathing sometimes for more than 45 seconds. He still has these about 4 times a day...mostly when he's sleeping or about to wake-up.

It's good and bad at the same time. He's not having the seizures that left him unable to walk last year...but he's still having the seizures we believe are affecting his development.

One good thing...and most parents might not find this good...Gio is trying to bother his little brother...a lot. He's also trying to take bites out of him. Unfortunately, when Gio is very excited or frustrated, he chooses to use his teeth to remind people he's there. Ask John, a schoolmate in Gio's early-childhood class. Gio's teacher this week has to stick her fingers into Gio's cheek to pry his mouth off John's arm. Luckily, Gio didn't break skin, but John had great dental imprints a dentist could use to make a retainer from. While we are pleased to see Gio interacting with other kids...this might not be the best way.

This is the only time Gio isn't running around...while sleeping.