Since my last post, I have been to Vancouver and back again. The trip was quite a whirlwind. We found out about two weeks ago that the epileptologist at BC Kids (a pediatric neurologist who specializes in epilepsy) would be able to squeeze us in for a visit this past Friday. She wanted both Michael and me to be there, since we were going to discuss the possibility of doing the ketogenic diet. In some ways, it was meant as an orientation for us, and in some ways it was an opportunity for her to assess whether we’d be a good fit for the dramatic lifestyle change that goes along with the diet.
Yukon Health usually will pay for just one parent to travel with a child as a “companion” for medical appointments Outside (i.e. anywhere not in the Yukon). However, they will cover the cost of both parents travelling if it is deemed medically necessary. I was on pins and needles waiting to find out whether they would agree that it was medically necessary for us both to be there, and thank goodness they did.
The three of us left on Thursday morning, and so theoretically had a whole day of “free time” in Vancouver. But we’d been up since about 5 a.m. because Jade had had a series of seizures that required emergency medication. This was the fourth morning in a row that we had to use her rescue meds, so we were physically and emotionally spent by the time we arrived in Vancouver, got to our lodgings, and had lunch. It was definitely time for a nap. We did get to see my sister for supper that night, which was wonderful; the last time I’d seen her was at her wedding in Mexico last year.
Jade’s new neurologist, Dr. Huh, is great. I arrived at the appointment clutching a notebook filled with little coloured tabs; I had a tonne of questions and I didn’t want to forget any of them. The doctor chuckled when she saw the notebook and she said she knew she liked us already. We spent a bit of time talking about the history of Jade’s case and then she spent a bit of time examining her.
I’ve never gotten to see Jade at her previous neurology appointments, so it was fun watching Dr. Huh interacting with Jade, seeing how she used different kinds of toys for her tests. We already knew that Jade is right-handed, but didn’t realize just how strong her preference is until we watched the doctor doing some of her tests. When it came to testing for reflexes, she took out her little hammer-thing (wonder what it’s officially called?) and told Jade, “This is my booper!” Every time she’d hit a spot on Jade’s body, she’d say, “Boop!” Jade was fascinated, and I was highly amused. When she looked into Jade’s ears, she said she was looking for puppies in there; tell me you’d keep a straight face at that line.
Jade had a number of seizures while we in Dr. Huh’s office; in fact, Dr. Huh observed more seizures than we did, which was both surprising and a little distressing, given that we think we’ve gotten pretty good at watching for them. She also observed a slight tremor in Jade’s hands and a slight lack of balance, probably from fatigue and the number of seizures she was having. (She’d had another series of early-morning seizures, although this time they hadn’t required the rescue meds. But they really tired her out.)
Based on the last EEG, our recent observations of Jade’s seizures, and her examination that morning, Dr. Huh concluded that Jade’s anti-seizure medications really aren’t working. Since Jade has now failed three medications (Clobazam, Valproic Acid, and Clonazapam) there’s a less than 10% chance that any other anti-seizure medication will work. The longer the seizures go uncontrolled, the worse it looks for Jade’s development. We’ve already had confirmation that she is slightly speech-delayed (though we believe that started even before the seizures; the more seizures she has, the harder it becomes for her to catch up. Given her age, her type of epilepsy (Myoclonic Astatic Epilepsy, we were told for the first time), and the fact that we’re pretty proactive and organized parents, it seems Jade is an excellent candidate for the ketogenic diet. We were told that Jade’s type of case is one they want to treat aggressively because right now she functions at a good cognitive level, so she really has something to lose.
BC Kids has a special kitchen for training parents who have a child starting the ketogenic diet. Besides the doctor, a nutritionist and a nurse are dedicated to the program. It is such an intensive use of resources, they can only start two kids on the diet every month. I am really grateful that they told us they can probably fit her in toward at the end of November. I expect that Nugget will have arrived by then, and although it means I’ll miss a week of my mom’s visit (boo!) as far as we’re all concerned, the sooner Jade can start the diet, the better.
In the meantime, despite the low probability of success, Jade is starting a new drug called Keppra. This is the anti-seizure drug they usually try first at most US hospitals; we’ll see if it does anything for Jade. I expect we’ll see at least a short-term improvement; maybe that will tide us over until we can get her started on the diet.
