Well, it has been a really long time since I've even looked at this page. Now, it appears that the title is completely inaccurate.
James stopped the Ketogenic Diet back in the fall of 2012 due to the inability to handle the side effects. He was in the hospital every 4 weeks due to acidosis. They'd fix him up with IV fluids, get his Ph back in check, and he'd finally start eating and drinking again. Then they'd send him home where he'd slowly deteriorate and we'd have to return again. He was also jaundice and found to have a fatty liver. The most concerning effect was his cholesterol levels which had gone from the 150 range up to 378. During a seizure, his heart rate would increase to 180-200BPM. Even though we were trying to prevent a fatal seizure we had increased his risk of clot or stroke times 10. There's no difference in fearing your child dying from a seizure versus a stroke. Either option would be utterly devastating.
Since weening from the diet, James has done well. His seizure activity has waxed and waned. The 30-50 daytime seizures fortunately never returned and we typically only see nocturnal seizures. We've kept his diet gluten and dairy free. It is also high in good fats, like avocado and coconut oil, and low in carbs. Unsweetened almond milk is his beverage of choice. Organic is the way to go to avoid any exito-toxins from triggering seizures unnecessarily.
We're doing the best we can with what we can.
I'll hopefully be posting more often since I'm trying to weed out the un-needed time/emotional drain in my life. Too much clutter and drama can wear you at as much as the real life strain can.
Until next time...
