We left the hospital on Tuesday still with no answers. The results of her 23h VEEG (video EEG) said that she did not have one single seizure while she was on it. We saw her have 16 episodes that looked like infantile spasms. Her legs kick up and as she lets out a small grunt while she does a little crunch. One of the reasons he believes she is not having seizures while she does this is her behavior while she is doing it. She smiles, laughs, kicks, makes eye contact, nurses and babbles.
Before she did ACTH injections her seizures were much different. She would kick her legs up but she would also flail her arms out and turn her head to the side and occasionally cry out or moan with each one. When it was over she would scream, cry, and then go to sleep. Which all are very typically responses to having a seizures.
She no longer cries or goes to sleep after her episodes.
The neuro just kept saying "Emily is a mystery". I asked him flat out is this a good thing and all he could say is her EEG is very abnormal. Every 5-10 seconds she has a firing on her eeg for a potential seizure. Due to those results we changed her meds around completely.
The change in meds have seem to have helped. We went from 15-20 seizure-like episodes in the hospital to so far at home 4-9.
We want to be happy but its just so hard to because I have heard of some seizures that don't show on eegs. We have another appt with our neuro on Tuesday and I have a lot of questions for him. We also have an appt with a ped. opthamologist to see if we can begin vigabitrin (sabril). There is a potential side effect of peripheral blindness with this medicine, so she will have to have to be followed closely by the eye dr to try and prevent that.
How do they do vision exams on babies? That seems very hard to do.
We also started Emily on melatonin at night. She is having a hard time sleeping at night and that makes for a grumpy mommy and baby. It seems to help a tiny bit. I will take a tiny bit though.
Emily has been so much happier the past couple days. We are even getting a few chuckles out of her every now and then. She smiles ALL the time now. If you knew Emily before all of this you know she never smiled. I never get tired of seeing those smiles!!