We met with Gabriel’s new Neurologist Dr. Abdelmoity.  He is the medical director of the Comprehensive Epilepsy center at Children’s Mercy and he is an epileptologist (neurologist who specializes in epilepsy).  On a side note Dr. Abdelmoity played on the 1992 Egyptian National Basketball team.  Anyway he was awesome, both realistic and optimistic and we continue to feel that we are in very good hands.

The great news is that since we were in the hospital and started Depakot, Gabriel has not had any noticeable seizures.  As a result Dr. A suggested that we wait to start the ketogenic diet.  If the third drug works, we wouldn’t have to do the diet and given the nature  of it and the way it changes everything about your life (from an average of 2 hours of day in preparation, to the way that you celebrate holidays, etc), that is a good thing.

The grain of salt is this.  45 percent of all epilepsies are “refractory” to drugs.  Meaning that drugs alone do not eliminate the seizures.  Gabriel has Doose Syndrome, which is a rare form of epilepsy – Dr. A said out of 5,000 cases he has managed, he has about 35 Doose kids.  Actually from what I hear 35 is a lot, so he has good experience with Doose kids – which is encouraging.  Doose is more often resistant to drug interventions, and thus is very often a candidate for Keto.  Also he said that only about 5% of kids who initiate a third drug see seizure freedom.  Depakote was Gabriel’s 3rd after 2 failed to control them.  He also said that ultimately about 80 percent of folks with Doose end up on Keto.  The good news is that Keto tends to work very well for Doose kids, so if we have to do it, there is hope beyond pharmacology :).

What was most encouraging is that he seemed to imply that Gabriel is likely to be on the better end of the Doose spectrum as it pertains to outcomes.  Of course he didn’t come out and say that he would – the truth is its way to early to know for sure, but he was encouraged by his activity and general level of energy and engagement.

So here is the plan.  We keep going day by day hoping that Depakot was the answer and that Gabriel doesn’t see a return to multiple seizures a week/day etc.  If that happens – we would not ever go on the diet I assume.  If however we do see breakthrough seizures and a return to where we have been, then the next Monday we would start Keto.  In the mean time we will also be getting another EEG to see how the Drugs have helped.

P.S.  Children’s Mercy has the second largest Ketogenic Diet program  in the country with more than 125 kids currently on the diet.  It is also one of only a handful of level IV epilepsy centers in the United States. 

So we are moving forward with Faith, Hope, Love, and a plan.