Ellie had an appointment with her neurologist, Dr. Dulce, on Monday, April 1st, and a 24 hour EEG on Tuesday and Wednesday.  We had a very good meeting on Monday, and I was quite pleased with the things being put in place. Ellie was hooked up for a 24 hour EEG on Tuesday morning.  Before we went to the EEG appointment, we stopped by the lab at Children's for blood work to test the level of her seizure medicine, Trileptal, to see how it compares to the test they took the day of the seizure. This will be a factor on whether or not they change her dosage.  Per her doctor's request, Stuart and I had Ellie stay up until about 11:00 pm both Tuesday and Wednesday night to see if anything shows up on the EEG from fatigue. Things the doctors are looking for on this EEG are any changes in the brain/brain waves from the last time she had an EEG, background activity, and sub clinical seizures that Ellie may not even know are happening.  Ellie has been experiencing “dyslexia” type symptoms in both her reading and writing since the March 10th tonic-clonic seizure. When we told Dr. Dulce about that, she ordered an all day neuro-psych evaluation which is an in depth assessment of skills and abilities linked to brain function (attention, problem solving, memory, language, I.Q., visual-spatial skills, etc...).  She had one of these done when she finished chemo, and it was super helpful, so I am very happy that the doctor ordered this.

We also set up an appointment with the neurology psychologist, Dr. Thomas.  The doctor thought that Ellie would benefit from sessions with Dr. Thomas to help her develop coping mechanisms when she feels the “brain fog” seizures coming on due to stressful situations.   We totally agree!

Dr. Dulce will be reading the EEG and will call us to let us know the results sometime in the next 5-10 business days.  She said depending on what she sees, she may order an MRI.

I asked the doctor about limitations and soccer, and she said she did not recommend limiting anything at the moment. Which made Ellie (and us) super happy!

That is it for now. I will update when we know more. As always, we appreciate your thoughts, prayers, and words of encouragement.