Monday, May 4

Monday, May 4

The quick version:

  • The steroids worked. The events that we’ve seen over the past two weeks are not seizures. The best news we could have gotten today.
  • No ACTH. No hospital stay to start ACTH. Weaning off steroids. Starting Topamax.
  • We got our third “I don’t think it’s tuberous sclerosis” opinion, this one from Dr. Shiloh. Still waiting on the genetic testing that will be definitive, but still good to hear.


The more detailed version:

At 8 this morning, our EEG tech Helen started to put on Nora’s third “wire ponytail”, but this time was much easier – no paste, just tape. The EEG was ready to start recording right around 9:15 and Nora had an episode at the same time. This episode was a bit more intense; she was tired and pissed, paste or not. We got the episode on the EEG recording, thankfully.

An hour or so later, Dr. Shiloh came in to say hello, and wanted to capture a few more ’episodes’ on EEG. We decided to extend the scheduled one-hour EEG as long as necessary to capture more episodes. Her preliminary opinion was that the episode at 9:15 was not a seizure.

Jackie and I fist-bumped.

Dr. Shiloh also reiterated what we’d heard at Duke regarding tuberous sclerosis: she didn’t think that Nora’s MRI showed the typical TS presentation.

I cried.

We kept Nora on the EEG until 2:00 or so and captured two more events. We shuffled down to the clinic to see Dr. Shiloh who confirmed that the other episodes that we captured on the EEG were not seizures.

We’re now going to wean off of the steroid and ramp up on Topamax, an anti-epileptic drug.

Though tuberous sclerosis doesn’t seem likely, it’s still a possibility. The test results should be back in the next week or two, and Dr. Shiloh promised to call as soon as they’re in. The full test results will come back in twelve weeks; those results might help us better determine a long-term treatment plan and / or prognosis.

Our more immediate concern is that seizures don’t return when the steroids go away, so we have a follow-up visit for another EEG on the May 21 which will be two days after the steroids are completely gone and Nora is on her full-time Topamax dose.

There’s still a cortical dysplasia – an area of Nora’s brain that simply didn’t develop correctly – in the part of her brain is very important for visual processing. Dr. Shiloh told us today that because Nora’s brain is still so young and has high plasticity, it’s possible that her brain will move that visual processing job to another part of her brain.

Nora could still have some developmental delays; it’s just hard to know when she’s so young. The likelihood that Nora will deal with seizures / epilepsy for the rest of her life is high. She’s got a good team, though.