A Christmas Miracle

Believe it or not, Kate fans... New Years Day will be 3 weeks since we've seen a seizure. It is a Christmas miracle, for sure!

I appologize for my lack of posting the past week, but we've been a bit busy with the holidays and getting into a routine with Kate's new diet. Obviously, our efforts with the diet are more than worth the better than expected result of NO SEIZURES!!!

We were told that there was generally a 1/3 rule with the diet's effectiveness. 1/3 of patients unfortunately see no benefit of the diet, 1/3 see some control (but it's usually not worth the challenges of the diet), and the remaining 1/3 see a significant increase in seizure control (> 80% decrease in seizures). As usual, Kate's the outlier - so far a 100% decrease!

We had a Keto diet follow-up at Stanford yesterday. Kate has gained 3 ounces since leaving the hospital, which apparently is appropriate gain. Since her seizure control is so good, the doctor feels comfortable being 'aggressive' with weaning some of Kate's medications early. (We were told initially that we'd only consider weaning after 4-6 weeks of improvement.) We've already started weaning the phenobarbital. If all goes well (no seizure still) in 2 weeks, we'll stop the phenobarb all together.

It is with excitement and reservation that we start saying goodbye to phenobarb. Two of the four times Kate was in the hospital for seizures was as a result of taking her off phenobarb. We also believe that some of Kate's developmental delay is due to the effects of this drug. Let's just hope the diet is doing the work of the phenobarb and we'll have no hospital excitement!

A Happy and Healthy 2009 to everyone from the Mackuras!!!