The Basic instinct

The basic instinct of most parents are to protect their children. When something happens that is out of your control, it rips at your soul. It tears at the very fabric of your being, making you question everything.

If you haven't guessed by now this isn't going to be one of my upbeat posts. And quite honestly that makes me mad. I hate self pity when I am doing it to myself. But I have to get this out or I feel like I will burn from the inside out.

SO Lily's EEG results were not what I was hoping for. But none of these medical tests have been so I guess I should have seen it coming, but I am most of the time the eternal optimistic.

So the EEG revealed that her brain is misfiring almost constantly in her sleep. Which of course explains why she has her seizures in her sleep and why they don't stop without Diastat or something stronger. I was expecting misfiring when she was going to sleep and where she was waking up but not through almost all her sleep. That has thrown me for a loop.

Also back when she had her EEG in Feb '10 the misfiring was only coming fro one area of the brain. Now it is coming from all over. Which means that a grand mal is a major possibility. They are not necessarily any more dangerous than what she has already had but they are damn sure more scary to see. Keep your fingers crossed that it doesn't happen please!!

Also she is still having misfiring while she is awake. Now it is no where near what she is having during the night, but it is still happening which means there is a possibility for a awake seizure. This crushed me because I was hoping that the Keppra was at least taking full care of those, but that is not the case.

So they are going to put her on Lamictal as well as the Keppra. They are pretty optimistic that it will take care of things. If this doesn't work, there are still 17 other meds that we can try as well as VNS and the Keto diet but the last two are just of nothing else works.

The whole meds thing scares me. I worry about long term effects and side effects.

And above all else I am just plain scared. Scared that she will suffer brain damage or worse.

AND I HATE NO BEING ABLE TO PROTECT MY CHILD.

So now comes my quest and if you are reading this, you can help me out. I am looking for a family that has a child that has seizures like Lily's. The families I know with children with Epilepsy, their children's seizures are different. So please, please, please repost this blog and maybe someone, somewhere will read it and say hey that's my kid almost to a T. And if you are that person, contact me please at hollie@lilysfight.org.

I will post more later this week.I have more to say but right now I am just spent and my head is killing me!

Oh and yes Lily is ok. She woke up Saturday at 4pm and has been back to her normal self ever since. Yay! Here is a pic I will leave you with. I had my makeup with me so I let her put some on in her hospital bed.

As always thank you so much for reading!