It's been awhile since I've posted. Damonito is doing as well as can be expected of a kid who has Lennox-Gastaut. He's 11 years old now and while this past year has been a bit rough, he's happy. Damonito had another surgery to replace a dead battery in his VNS. When the VNS was originally placed at the base of his brain, the doctors said the battery would last 10 years. This is the third battery in under 6 years but they estimate it's because it's at the maximum output so it wears down sooner. The VNS is an important part of his seizure control.
The bad news about this past year is that D'ito has developed migraine
headaches. It's not hard to determine when a kid, who is normally very
active, is suffering. And then of course there was the vomiting. He's
taking a migraine medication, amitriptyline, however it's made his grand
mal seizures worse. It's tough. It's all about the side effects.
Everything that is done for him centers around the side effects. So
having a couple of grand mals each week is better than him suffering
from debilitating migraines.
D'ito is finally off Kepra, something they've been trying to do for some time. He still takes Onfi, Topamax, Neurontin, Fycompa, and Lamictal. If it sounds like a lot, it is. His doctors think he's taking too much medication but it's what keeps him from daily seizures.
D'ito celebrated his 11th birthday in July. We had a party delay because he had a long grand mal seizure so we postponed the party to the next night when he was feeling better. You never know what will trigger a seizure, it could be the wrapping paper, it could be he missed a nap but it takes awhile to recover so it's best to let him rest. But he loves opening presents. It's such joy to see his face light up. And of course, there's that laugh. It's so great to hear him laugh.
