I just left a voicemail for Eliza Hamilton, the dietitian, since we had not yet heard from her. We want to start the ketogenic diet soon because we are severely limited in seizure medications because of Bertrand's liver problems. The medications most effective at treating his types of seizures have possible liver failure as a side effect for patients with no liver problems. Not cool.
Bertrand has hundreds of seizures per day. Even on the Keppra he has one every few minutes which, while an improvement from having a seizure every few seconds, are still a great impediment to learning and development. Also, the Keppra does not work at all on his startle or drop seizures, but at least possible liver failure is not a side effect!
We understand that it is not optimal to force his body to use fat instead of glucose to run it, but otherwise he won't be able to use his little body or learn anything at all. I want my son to have a chance to live his life fully. This is one of the tough choices that parents have to make.
So, we are going to give the ketogenic diet a try--at least for two months. Realistically, we have no other choice.
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