Day 1 in St. Paul

We traveled up to Fairbault, MN on Wednesday night. We were constrained for time with Grace's medication/feeding schedule (mostly overnight feedings though her feeding tube) so we decided to spilt the trip up and make our Thursday morning drive short. We arrived at Children's Hospital in St. Paul and saw Dr. Frost, one of the Epileptologists from the Minnesota Epilepsy Group. There are some additional drug therapies that we can try, I can't remember the exact names right now and probably couldn't spell them if I tried.

Wednesday was the last day of Keppra; they checked her dosages of Keppra while she was on it and we may have been in the therapeutic range it is pushed significantly higher and does have some results, we may go back to Keppra in the future if other treatments don't work.

There is one drug that has not been approved by the FDA as of yet, possibly might be approved next year. It is the preferred treatment in Europe over ACTH which was the steroid we tried originally. The drug I believe is called Vigabitrin, and is not a steroid; currently it is available in Canada by prescription or over the counter in Mexico and very very pricey.

Another option that may be an option is the Ketogenic Diet. The diet is a very very very strict diet that consists of about 90% fat. It would be easier to try it now versus later as she gets older as we would be formula based to start plus since she hasn't started food she essentially would not know any different. This treatment has been around for at least 80 years, instead of providing glucose for energy the body gains it's energy by burning fat. The diet is similar to Atkins but much more strict, virtually no carbs and the slightest deviation from the diet could could completely negate everything in the past. Needless to say Chocolate Chip Cookies would not be in Grace's future.

If we decided to try the Ketogenic Diet, Grace would have to have a G-tube put in; she currently has a NG-tube through her nose this would be a tube surgically put into her stomach and I believe a port would be in her belly. We would have to commit to try this for 3 months and if it worked we would be on it for apx the next 2 to 5 years. The benefits of this are that the diet can actually change the way the brain functions and could make Grace seizure free in the future or at least reduced even when she goes off of it. She would also be able to continue on drug therapies and once we reach a point in which seizures are stopping we would then reduce levels of the medicines to determine in the drugs or the diet are working or if it's a combination of the two. This would be a "natural" treatment option which is intriguing. We would be in close consultation with a Ketogenic Dietician here at Children's and working with an Epileptologist. We are going to meet with the dietician again today and most likely a GI specialist; if we go forward we would have to be in the hospital for a minimum of 5 days after the tube in put in. We will post more when we know more.