[This is a reproduction of an email update that I sent to friends and family on December 11, 2011. For more previous history, see Nora’s Epilepsy Story and posts tagged “Nora’s History.”]
We are happy to report that Nora has not had a seizure since Friday morning! Not only has she been seizure free for over 2 days, but she is full of energy and sharp as a tack. She has not napped, gone to bed later than usual, gets up at her regular time, tries to read to all of us almost constantly, and wants to eat (usually). This has been like a magical transformation!
She has consistently been getting ~10 g carbs per day, 30-40 g of protein, and 120-130 g of fat. She is adjusting well to the diet, not just in her behavior and seizures but in her tastes. Although I have to say that I’ve done a pretty good job of providing palatable foods. Anders eats almost all of the same things, just a little less cheese and eggs (and his hot chocolate is not made out of heavy cream), and many more apples (I think he ate at least 4 today).
People say that when they adjust to this diet, they feel more energetic than ever and mentally sharper, so I suspect that is the effect that we are seeing. Now how will we ever keep up with her?!?
We had a good weekend. Grandma Margie and Grandpa Cliff were here to visit and poured on the love and attention. We went to see The Nutcracker ballet, a local production with some special professional guests from Eugene. It was great and the kids loved it. Nora talked almost constantly, including “I wish I had a dress like that. Oh wait, I do! … Look at them wiggle!” Then we went to have gelato downtown. I had arranged for the gelato store to make a sugar-free version for Nora (although not carb free, but I had to figure that out as best I could). They don’t normally make it because it doesn’t sell, but will make it on request with sufficient notice. I knew the basic recipe for the fruit flavor and knew a small cup would fit into her diet for the day, but when we got there they had screwed up the fruit recipe. They had also made a sugar-free chocolate as an alternative, which was delicious but it was much more difficult to quantify the carbs (it was made with a mix which included skim milk powder, full of carbs). She had a small amount and I made an estimate on the carbs, but was very nervous about it. It is also sweetened with sugar alcohols which just pass out of the body, but can affect some people’s seizures (although it is fine for diabetics because it does not affect blood sugar). I was nervous and her ketosis level was lower last night, but she did just fine.
Every time we check the ketones in her urine, she is at the high range, with the exception of the evening after the gelato (and then it was moderate). I think that we can now be confident that she is constantly in ketosis (although I can’t smell it on her breath, but I can smell it in her urine. Ewww, sorry).
As for the mundane but important issues, she is dehydrated overall and we keep trying to remind her to drink all the time. Pooping has been a little difficult, but we’ve been using a magnesium supplement that should help over time, and I gave her a gentle laxative today in her fabulous hot choco-cream (helps the medicine go down, right?)
It is so hard to believe that the diet is the medicine that we have been searching for. Some people report that it works like this, so I am hoping that Nora is one of those lucky ones who get total control so fast. If this goes on, we can increase her carbs to 20 g in 3 more weeks. Then we could probably wean her off Depokote in 3-6 months. Normally people stay on the diet for 2 years at 20 g of carbs, then slowly increase the carbs until they are off the diet if the seizures do not come back. It is still hard to think 2 years out. We hardly dare to hope that this is the ticket.
Thanks again for all of the support and love. I’m glad that I have some good news to report.