Tomorrow we are taking Abe to Egleston to meet about the Keto diet. I am nervous about starting it but feel good that this may be Abe's miracle. That's really what he needs right now.
His phenobarbital level is way too high so we have started decreasing that. Not a good thing for Abe because his body seems to really like the phenobarb and seems to help his seizures. I started decreasing his Vigabatrin on the 14th and not long after that the seizures started getting really bad. This happened the one other time we tried to decrease it. So now we think it is doing more than we thought. I increased it this morning and after discussion with neuro I gave him another 250 mg. I also gave him extra Topomax and we will keep both of those increases. Tonight I will start decreasing Orapred.
OK on to tomorrow. We will go to Egleston to Keto clinic. I am typing this as I think it through so bare with me. Typically the child is hospitalized to do a rapid induction phase with fasting. Because of Abe's panhypopituartarism and hypoglycemia we will not be doing the fasting or the rapid induction. We have chosen to do this outpatient also. One of the reasons we wanted the muscle biopsy results is so it would help us make the decision on whether to try the Keto diet. For mitochondrial patients the diet can be very dangerous. I feel like we will be aware and watch for signs of it making him sick. Hopefully we will catch it before it sends his mito out of wack too bad and makes him regress even more. This has been very sad for me to watch.
This will be a gradual thing that we will let his body kind of get into ketosis on it's own time. Please pray that we will have a better understanding of the risk involved and a clear direction for him.