Long overdue update!

Sorry that I have been slacking on Lily's blog again. Things have been busy and a bit crazy here or there.

So on July 3rd Lily had yet another seizure. Yup 3 in 2 months. Totally not how she usually rolls but Epilepsy is unpredictable. The countdown is on till we get her dog and we REALLY can't wait now!

The seizure on the 3rd was at 7 pm, at the tail end of a much needed nap. She has never, ever had a seizure during a nap before, so things are really changing. And the seizure presented as an absence seizure (staring, no movement at all) so our nerves are very frazzled right now. If she were to have one of those while we were all asleep and it turned into a Status seizure......well it would be all bad, like really bad! So mama here has been averaging 3-4 hours of sleep a night. Tracy let's me roll with it (those of you who know me know that as I am soooooo stubborn, he really has little choice) but when it all catches up with me and my body and mind can't take it anymore he makes me get a good nights rest and he takes over the seizure watch for that night.

Lily's Keppra has been upped again and she is almost at a max dose. Once she hits that they will have to try her on something else. This scares the crap out of me because they have no idea how she is going to react to the meds until she is on them. Could make the seizures stop or it could do nothing at all or it could make the seizures more frequent and worse. So when that time comes I am going to be seriously holding my breath.

Also with each increase of Keppra she has been getting harder and harder to control. I recently read that vitamin b6 can relieve that side effect when taking Keppra, so Lily's Neuro put her on b6. HUGE difference!! So if you have a child on Keppra and they are having some behavioral issues, look into the b6! Also I have read that it may decrease seizure activity, so we are all about it.

Since the 3rd Lily has been doing fine. Well she was peeing the bed at night for about a week afterward but she has since stopped. That happens sometimes with her after a seizure. We are never sure if it's due to the seizure and her brain trying to reset itself or if its due to the increase of Keppra. Either way it always makes me nervous since she has been night potty trained for well over a year.

As always thank you for reading! I will try to keep up with the blog better!