Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, April 9, 2010

We're home from the hospital. We met with a new doctor, an eptologist, who specializes in seizure disorders. He seems familiar with Rett and was pretty knowledgable. The eeg last night did not show any seizures, which is good. It was an abnormal eeg, but that is Abby's norm, if that makes any sense. This doctor seems sure that what she was having in January and February were true seizures. It can be difficult to tell the difference between the shaking/staring spells common with Rett and true seizure activity. Even though a seizure was not caught on the EEG, we are assuming they were seizure because they stopped when we gave her Keppra, and they were observed by a couple neuro's, all who said they were definitely seizures.

Ideally, she would have had the 24 hr EEG when she was having days where she had multiple seizures, but they couldn't schedule it until yesterday. It is still unclear if the staring/blinking spells that she had a while back in her sleep were seizures or not. Either way, it doesn't seem too significant since it isn't happening frequently.

Long story short:
Abby was having general seizures a few months ago.
She's not having general seizures now that she on Keppra.
She may or may not have had a few different type of seizures at night over the past few months where here eyes flutter.
She didn't have any seizures last night.

Did we need the prolonged EEG to tell us this? Probably not.

1 comment:

  1. I hope it wasn't too painful (mentally, emotionally) for you guys. It is good to know that she doesn't seem to be having seizures now. Thinking of you guys!