After I posted last night post things went downhill.
Emily had 5 spasms/seizures all day yesterday and just this morning from midnight to 9am she had 7. (9 total so far) The longest one was over 50 minutes long.
I gave her all the medicine I could give her and she just passed out eventually.
I called the neuro as soon as they opened at 8:30 and they said to up her klonopin back to three times/day and increase the dose. So far so good.
She doesn't usually start having increased or longer spasms until around midnight so we will see if the med increase helps.
He also said we don't have many other options, which was hard to hear. Our next step is the ketogenic diet and a g-tube.
I am going to give her through the weekend to see if the sabril will help or not. If on Monday we decide to start the diet she will be admitted again to start the diet to make sure her body can handle it and I am sure they will go ahead and do the g-tube placement while we are there.
She is super smiley today too! It's so cute, she can hardly keep her pacifier in her mouth because she keeps smiling so much.
I got this picture earlier on my cell phone.