Sarah and I met with a dietitian (and Mira's former neuro's nurse) through the neurology clinic at Children's Mercy to initiate a modified Atkins Diet with Mira. We have been discussing the Ketogenic Diet for quite some time, but have been very reluctant to start her on it, for a host of reasons. What we have discovered, through some research, is that Johns Hopkins has been performing some trial studies with a 'modified' Atkins diet, citing similar results to the classic Ketogenic Diet, without the fasting/hospitalization requirement (see this link for more details). Recently other hospitals, including Children's Mercy, have been adopting the modified Atkins as a treatment for epilepsy.
The process of starting her on the diet is fairly easy, unlike the Ketogenic Diet. Again, there is no hospitalization, no fasting period, and no fluid intake (or calorie) restriction, unlike the Ketogenic. She will have to be monitored twice daily with a glucometer one that will also measure her ketones, to ensure that she is in ketosis. She also had to have multiple labs (done this morning at CMH) to get baselines, including an EKG. We will be really watching her weight as well.
The 'typical' Atkins allowance for daily carbohydrate intake is 20 grams. Mira will be at 10 grams or less. We have been slowly weaning her off of carbohydrates over the past few weeks, yet she isn't quite down near the 10 gram limit yet. Unlike the traditional Atkins Diet, the goal is to NOT lose weight, but rather to keep her in ketosis. Therefore, she will be eating foods that are high in fat and calories, including cream, butter, eggs, and getting lots of protein from meat, fish, chicken, etc. to keep her calorie intake up.
The plan is to try the diet for at least three or four months. If it is successful, we can hopefully start reducing her medications. The ultimate goal on the diet is to of course get her seizures under control (or least reduce them) and in an ideal world, we could eliminate (or reduce) her medications soon thereafter. We are supposed to get her labs back toward the end of the week, to make sure there aren't any potential complications in starting the diet.
So far, everything is looking good.