2004-07-02 Emily Part 2

It has been a very emotional and trying few days so please forgive me if I ramble a bit.

On Tuesday morning, she again awoke in the throws of another seizure. This one was about the same as the last one...the only difference being that she came back out of it a little quicker. Last time it took her a good half of an hour to come back, this time she was back within a minute. The ambulance came, took us back to Morton and conferred with her pediatrician. The decision was made for her to be transferred to Children's Hospital in Boston for further evaluation.

We went by ambulance, with my mother following. Because she was ok, I told Ryun not to meet us and just to hang in Boston (where he was working) and that I would call him when we had information.

We got to Children's where they performed a full battery of neurological and strength testing, all of which she passed with flying colors, and, typical Emily style, a little humor.

After a bit of a wait, a neuro consult came down, reviewed the information, and upon discussing this with his attending, decided that she could come home and scheduled an EEG for Friday. At this point, they still felt that the seizures could be related to the pneumonia and ear infection. He did however say, that if it happened again, we should call him and most likely, go right back in.

The next morning, it happened again. I called, we came back and he decided that she should spend the night and be hooked up to the EEG.

She was such a good girl. For an active little girl to basically spend three days in a hospital bed without complaint in my opinion shows what a trooper she really is...never mind all of the bloodwork and tests they had to perform.

At about 6:30 or so that night, they connected the electrodes to her head and as soon as she was admitted to her own room, they connected the machine. She had a bit of trouble getting to sleep(imagine having wires all over your head and chest...they were monitoring her heartrate as well) but she finally fell asleep about 9:00 or so.

My mother and I basically did not sleep at all...between being nervous and uncomfortable, it was next to impossible.

She woke a few times during the night when the nurses came in to check on her, but other than that it was an uneventful night, which was good.

At about 11:00 in the morning, the EEG tech came in and disconnected the machine...leaving the leads on her though in case they needed to do get any more readings.

It took about 3 hours or so, but the neurologist finally came back and said that she did in fact have a seizure disorder, affecting mostly the right side or her brain but that he saw various other places as well.

Despite the diagnosis, I did feel some relief in the knowledge that we did have a reason for the past few days.

She has been prescribed Depakote, which the doctor fetl was the most appropriate medicine to treat her particular type of condition. He also prescribed her an valium that is injected if she were to have a seizure that lasted for longer than five minutes or had one right on top of the other.

She has to have her blood drawn in one week to test her levels, and had an MRI scheduled for July 7, just to make sure that there is no "other" cause for her siezures. Right now, the neurologist seems to think that she is one of the many people who just has this disorder, with no identifiable reason.

After these initial few months(and once we are sure that her medicine works etc.) she will have to have her blood drawn every 6 months to make sure that her levels are ok and that the medicine is still the right one for her condition.

I have been reading as much as I can about this and am trying to keep informed about all the different aspects...how it will affect her everyday life etc.

It's all a bit overwhelming but both Ryun and I feel we need/want to do as much as we can to help her lead as normal a life as possible. Most people with a seizure disorder have no problem doing anything really so it is our hope that she will be the same.