Emily

This is what Emily's neurologist is pretty sure she has.

He reviewed the results of her last EEG (almost 2 years ago) and saw that the notes written by the person who interpreted the results said that ESES was a possibility (kind of like she was just below the threshold for diagnosis). Based on the obvious neuropsychological deterioration (the behaviors I have listed before...some of which are referred to in the above referenced article), the wet underwear situation, recent concerns regarding numbness in her arms, and her last EEG (which in conversation he referred to as "active"), he has all but officially said that she has it. An over night EEG is needed for actual confirmation. We will be scheduling that, as well as an MRI within the next few days (making the appointment I mean).

He is also going to touch base with Dr. S, the Dr. that heads up the TS Clinic at Children's to schedule an appointment to see him again, as well as get a referral from him for neuropsychologist that can do some neuropsychological testing with Emily. Dr. C feels that it is important to follow up with Dr. S to see if anything has changed with Emily specifically, but also to find out if, since Emily's diagnosis two years ago, he has come across anyone else with the same concerns (as in a similar MRI or genetic testing results). He also feels that the testing should be done as a basis to see if there are any other concerns we should be treating or addressing.

He upped her Lamictal to 125 mgs instead of the 100 mgs that she has been taking. He did this because, conveniently, Lamictal is also used as a mood stabilizer (which would obviously help with the various behavioral issues that have been a concern).

The treatment he talked about for the ESES if in fact the EEG confirms this diagnosis is a high does of Valium. What he said was this:

"It is treated by giving her a high dose of valium, which of course would mean we keep her in the hospital."

Um ok, does that mean that she would be in the hospital for a prolonged period of time? I need to find out about that. It doesn't sound like (from what he said and what I have read) this thing just disappears after one medical intervention (on the plus side though, it does seem to disappear in the majority of cases in the teen years).

Emily was not at all thrilled with the thought of having to stay overnight at the hospital for even one night. She didn't want them to "glue those ugly thing to her head so she looks like an alien." I tried to talk to her...told her that this was all to help her feel better and maybe, help us all get along better etc. She seemed satisfied with my various explanations and, by the time we got to the restaurant for dinner, she was fine.


So, that's where we are at. That's the bad (but not really bad) news.