A year ago we started the Ketogenic Diet at Hopkins in Baltimore. Ngaire was starved for 24 hours then slowly had food high in fat introduced over the remaining 3 days in hospital. It was a tough first week. She threw up a lot, wouldn't eat or drink at one point and was generally pretty miserable.
On the second day of initiation Ngaire stopped having seizures. She had 25 seizures the day before. It was a miracle. No other treatment had we'd tried (and we've tried a lot) has been that effective, that quickly. We had three glorious months without a seizure and were beginning to wonder if we were one of the very lucky families who start the diet and never have a seizure again. Sadly the seizures returned at the end of May (Memorial Day Weekend).
The seizures got quickly worse. She was having over a hundred a day again by the end of June. It was a horrible time. We kind of worked with a very difficult neurologist trying to figure it out. Actually he just told us random things to do with no explanation. We tried a few things and asked lots of questions, but the more we asked the more he became frustrated and, in my opinion, disinterested (we were probably a bit spoilt to have such a responsive and caring neuro at Children's Hospital in DC previously). In the end I turned to the Doose list on yahoo groups. It was a pivotal moment in my opinion. There I found many people struggling everyday with the sorts of things we were and much worse. I found a lot of people with expertise in the diet from the trenches. The number one thing that a wonderful person on the group said to me was, "The main thing to remember is that she is a keto responder, and all these other parts that can take some time to work through, will be resolved eventually, hopefully sooner rather than later...". This gave me the hope I needed to carry on. We have kept tweaking, slowly removed a med altogether (which seems to have made all the difference - I need to write about this more) and we've gone back to our old neurologist who treats us like we're part of the team.
Today, Ngaire is in her 8th week of being seizure free since completely removing Depakote. In the last 4 months she's probably had 3 months total without a seizure, which is incredible considering where we were. I know the struggle is not over by any means and it weighs on me heavily. I now have some grays in my beard! However, it's been so worth it to see her able to ride a bike, talk without losing her thought, do puzzles...
Ngaire on day 1 of the diet with her pal Fifi the sheep.