More neurology....

So after Livi's THIRD seizure this past week on vaca (while on the PA turnpike....and it was a bad one...) we scheduled a face-to-face meeting with Dr. Hershkowicz today at 2:15. Mike and I have heavily discussed this past week about putting Livi on some meds since they are still happening, and was prepared for Dr. H suggesting them at the appt today....and were totally shocked when she thought that it was better to hold off on them. After going into every seizure episode again, and exploring all of the different reasons that could be behind them, she is thinking that she has a disorder (sorry, can't remember the name of it for the life of me!) where basically she'll 'outgrow' them by age 5. It's something in 1-5 yr olds where they are extremely sensitive to changes and their brain will just freeze up and seize. And since Livi doesn't display any signs or symptoms of having seizures during the day, the Dr. is pretty much ruling out epilepsy. Yay! BUT if she hits age 5 and is still having them, then it's time to put her on Keppra (sp?) since it will most likely indicate that she has a seizure disorder. :( So it looks like we continue on with no sleep at night, and Livi still in our bed. We explained our theory on why they happen to her, and she tends to agree that it could be the cause.....that Livi just overheats. So we have to get her a spritzer bottle and everytime it's hot out, or she's getting really warm, we have to spritz her body down with the cold water so the heat dissapates from her body.
The second set of great news ::insert sarcasm:: is that Dr. H is leaving August 31 to Seattle Washington :( So for now we are sticking with her nurse practioner, Kim, who has been with her for the past 10 years. We have a follow up with her in December, and I pray that we don't have to go in before then.
It weighs so heavily on my heart that this is happening to my sweet Angel. It feels like everytime I close my eyes I can picture her seizing and I start crying. I can't sleep at night, I can't relax during the day, and I can never let her out of my sight when her eyes are closed. The stress of something happening is a constant pressure that I feel is getting so heavy. I don't think I have slept more then an hour at a time since this past seizure, and I don't see anymore sleep in my near future. I drag all day at work, and all night at home. I can't focus on anything anymore out of pure exhaustion, and have become more lightheaded and sick because of it.
::sigh::