Wednesday was a really horrible day. Lila started off the morning with a seizure. This seizure was different than Friday's seizure activity. She was catatonic, unresponsive to her name/ my voice, and her limbs were limp like a rag-doll. It lasted about 45 seconds. I called the pediatrician to tell her about the new seizure. I told her that Lila didn't lose any oxygen and she remained conscious after her seizure. She asked me to go get labs drawn on Lila to see what her Phenobarbital level was--in the event that they needed to tweak her dosage. After we had the labs drawn, Lila had another catatonic type seizure. This one was brief and lasted only 15 seconds. We went home and Lila had two more seizures. I called the pediatrician again and she told me to go to the UCLA Emergency Room and demand to be admitted. She didn't want us going to Cedars again to see the horrible neurologist that they have on staff. When we arrived at the Emergency Room at UCLA Lila had another seizure in front of the nursing staff. They observed the seizure, took her vitals, made sure she wasn't losing any oxygen and then told us to go to the waiting room. We waited for 3 1/2 hours to be seen by a doctor. Lila had a series of several more seizures in front of the doctors. Hey, at least she has good timing. After 9 1/2 hours in the ER and a measly 12 seizures later they sent us home. They told us that because she wasn't losing oxygen, her demeanor immediately following the seizure's was normal, and the fact that we had an appointment with a neurologist in the morning-we were in pretty good shape to go home. The highlight of our ER visit was the deranged fellow in the room next to us. Here's a re-cap of his conversation with the ER Nurse
Nurse: Sir, why are you here?
Deranged Fellow: I crushed up a CD and swallowed it.
Nurse: What!?! That's crazy!
Deranged Fellow: Mumbles something
Nurse: You also ate two toothbrushes! Uh, why do you have an IV in your arm?
Deranged Fellow: They discharged me with it from the other hospital.
Thursday morning we went to meet with our new Pediatric Neurologist. She is terrific. She assessed Lila to be developmentally on track and with her age group. She is weaning Lila off of the Phenobarbital and is putting her on a new anti-seizure med called Keppra. She said that it may take a little tweaking to find the appropriate dosage to control the seizure activity. The Neurologist is starting Lila off on a very low dosage. Hopefully it works. She also said that she believes that Lila's seizure's can be controlled with medication and Lila will eventually outgrow the seizure's without any developmental delays. I hope and pray that is true. She re-scheduled us for an EEG for this Tuesday. Yay! She is hoping to get us an MRI soon too. Lila rounded out the day with five brief seizures. Not so terrific.
Today was an ordinary seizure filled day. Nine seizures. All brief. Each time Lila returned to her normal self. The only thing to be noted about today was that Lila is more tired than usual which is most likely because of her meds.
I think that this past week has finally caught up to us. We want answers. We want the seizure's to stop or at the very least be under control. We're tired of watching our beautiful little girl go through this. We had the whole "Why Us" conversation with a rundown on what a difficult journey we have already been through to have Lila. It sucks. I wouldn't wish this on anyone. We're coping as best we can with this hand that has been dealt (more like bitch-slapped) to us.