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.
Laura harmon said:
Soo soo happy for you!! Praise the lord!
Jerri Stafford Lange said:
Today, science is far better than 30-50 years ago. My brother was an epileptic since he was born in 1928. Nothing could be done for him until some hard drugs came along. Prayers have been sent to God from here in Ohio, not only me, but our church and friends. Thanking God for where you live and the progress medicine has made. Prayers continue.
I’m so glad that you guys finally seem to be “figuring it out”. I hope things continue to improve for Gabriel.
So glad he’s been seizure free for this long! I pray the medicine continues to work!
Anna Grabrian said:
Awesome news!!!! Praying that this third drug does the trick. Hope is a wonderful thing. Love you guys.
I’m just now getting caught up here. Glad for the mostly good news. Thanks tons for keeping us all updated so well. I’m continuing to pray with you.
Becky Franklin said:
Just now seeing all you guys have been going through. I love you Amy and send hugs to little G. I will be joining you in praying for healing and peace throughout this journey. I am glad you and Chuck can lean on each other through this scary time. If you feel up to a get together, I would love to see you.