Emily's neurologist came in late today with the results of her 24h video eeg.
During a video eeg they hook her up like regular except in our room, with a camera on her the whole time, and there is a button we push every time we think she is having any seizure activity. We pushed that button 16 times and one of her seizures lasted over 30 minutes. They called in the on call pediatric team because they thought she might go into to status. They gave her more meds and finally it stopped.
So the neuro doc reviewed the eeg and gave us the very confusing results. He said that out of the 16 times we pushed the button she did not have one seizure. We even sat down and reviewed the 30 minute one with him. We showed him what we saw and he showed us on the eeg that there were not seizure activity to match it.
She does have frequent potential activity that could cause seizures if she is not on seizure meds. We stopped her topamax and routine klonopin and started her on dilantin and keppra.
Just being off topamax her appetite has increased ten times and she is moving more!! Its crazy what those meds can do to them.
This is her lifting her arms up. This is a huge deal because up until now her muscles have been so tight she would scream if we lifted them and now she is doing it on her own!!
So needless to say we are so confused. We are overjoyed with the news that what we thought was up to 20 damaging seizures a day aren't.
So now we start the process of trying to figure out what she is doing. I will try to get a video of it up in the next few days.
I am so happy I could just jump out of my skin!! God is truly giving us a miracle. Thank you all so much for all the prayers and kind words!!.
Hopefully we will know more tomorrow.