If some of you are on my facebook, I'm basically copying and pasting this so forgive me
OK, so after the last 10 days of hell, we were able to get into the most wonderful ped. neurologist yesterday. She took a ton of time with us, nearly 2 hours! She looked over every test, talked to us and actually listened. Ordered a new EEG and a new MRI for sometime this month that will have to be done at St. Francis, but best of all, she gave us the first good news we've heard since this all began.
She's not certain Isabelle is having seizures at all. She thinks the other docs saw some abnormal brain patterns and assumed seizures, but she doesn't think so. There are still some little spikes and drops on her EEG that she's not sure about and the memory loss we're having she said wouldn't be the petit mal seizures anyway, it's too long of a lapse. It's concerning, but right now, they don't know what to be concerned about as far as that goes.
We're off the seizure meds for now, watch and wait and see what the next two tests show. If she does have a seizure at any time, we'll have to call and she'll have to start on some med, but at least there is a better option than what they put her on at first. It won't be damaging to her little liver.
They are also sending us to see a different specialist that works with neurological memory issues in kids with cysts/tumors, but it's likely to be about 8 months before we can get in to see her.
The doc we saw yesterday was amazing, Children's Hospital is, as always, amazing, and she told us if we had any concerns to call and she'd note our chart that she'd call us back personally.
I feel like a huge weight has been lifted. We know we still have a lot to worry about, but right now, things seem much more optimistic. Maybe we can get back to a regular life now, I sure hope so! Thanks for all the wonderful messages and good thoughts! xxx
I'll keep you all posted if anything changes.
