Today we had a chance to meet with U of Iowa's top pediatric neurologist. At our last eye appointment, our specialist, Dr. Drack, recommended that we get a fresh perspective from Dr. Matthews. Jude last saw Dr. Matthews when he was 18 months old and admitted for a video EEG. Since then, we focused on his seizure control and have not had a seizure in four years and been off anti-seizure meds for 2 years. Dr. Drack thought it was time for a recheck.
Jude is doing so well. He is in a regular kindergarten class, and with accommodations/modifications for his vision impairment, he is on-track developmentally with his peers. He knows all his colors, numbers and letters by symbol and word. He is learning to write and read. So on this trip, we found ourselves in the exact exam room from 4 1/2 years ago when this journey started. There was a child size chalk board on the wall, and Jude just started writing out numbers 1-20. Then he wrote out to 100 by 10s. He was writing names and drawing stick people and a whale :-) We have come so far since the first time we were in this room.
Dr. Matthews came in and talked to Jude. I love when doctors talk to the kids and not just the parents. Jude answered all her questions and really wanted to talk about his new baby sister, Anna. She had him do some physical tests including some with balance and coordination. She remarked at how well he was doing. She asked our reason for coming. Sarah said, "We wanted to see if there wasn't something obvious we were overlooking that could cause more health problems later...you know, obvious to a pediatric neurologist." She smiled and said there was nothing obvious to do further neurological tests on Jude. I told her how a lot of his progress happened when we weaned him off his anti-seizure medicine called Keppra. She said, "That's not suppose to happen..." She also said they give children Keppra because it's not suppose to interfere with cognitive ability. She then followed up with a somewhat shocking side note that the type of seizures Jude had (myoclonic seizures) typically don't just get outgrown. But they have stopped. She then said the only two things we know for sure is that Jude's vision is impaired because of his optic nerve and that he has a history of seizures. She rounded it out by stating he's doing "too well" for her to think anything else is wrong neurologically. She doesn't believe Jude has any cognitive deficits and she won't need to see us again unless things significantly change.
Chris and I thanked her over and over--and got right out of there before anyone changed their minds and wanted to poke, prod and x-ray Jude. Back in the car, we counted, and today was our 44th trip to the University of Iowa Hospitals & Clinics for Jude in 4 1/2 years. We go back next month to see Dr. Drack and we are anxious to hear what she thinks during this visit.
Thank you all for your prayers, love and concern for Jude.