I think Jon is absorbing the potassium well from the potassium cytrate, because his potassium levels (his electrolytes are usually checked once a month or more) have been good until the last reading -- in the 2 weeks prior to that blood draw, I had not given him the Cytra-K because he was recovering from the stomach virus, and, as you mentioned, the potassium cytrate can irritate the intestinal walls and cause diarrhea. So, at the last blood draw, his potassium levels were normal, but on the low side of normal.
I went back and checked his (seizure/food/meds/kitchen sink)log, and the lowered potassium levels did not seem to enhance seizure control -- in fact, the opposite seemed to be true, and he had better seizure control when Cytra-K gradually reintroduced (however, at the same time we had just added in the pancreatic enzymes and zinc).
Since there's mixed messages about the implications of potassium and seizures, it would perhaps be wise at this point to opt for a moderate potassium intake -- neither high nor low. Since the baking soda regime seemed (inexplicably) more effective than the Cytra-K for managing acidosis, we're doing a trial with a reduced dose of Cytra-K and 1/8 tsp of baking soda in water twice a day. He'll get his levels checked again in a week, so we'll see how that works with the acidosis.
After a quiet 5 days with only 1 seizure, and several days with normal BMs, we introduced 1 dose of probiotics yesterday. Wow! 3 seizures in 24 hours. The last one (this morning) was
definitely photosensitive (he was fixated on the Christmas tree -- even though the lights are the very muted fiber-optic, I had only 1 lamp on in the sitting room, so it was in a bit of a dark corner).
So...probiotics and seizures...if anyone doubts the gut-brain link, I would like them to explain how introducing "good" bacteria into the gut can trigger seizures. I remember you mentioning the same experience with your dog, and have read numerous anecdotal reports on the forums -- especially with kids. Even Jon's GI doc indicated that probiotics could trigger seizures in someone with epilepsy.
So...the question is WHY do probiotics trigger seizures? Apparently, the "die-off" of the "bad" bacteria, and
especially fungi (Candida, among others), release toxins that can impact the central nervous system. I was a bit surprised to see such an immediate effect -- thinking that it would be around the 3rd day that we'd see the reaction.
As I was doing some more research on this, I came across this article in the Epilepsy Therapy Project
http://professionals.epilepsy.com/page/infectious_fungal.html
According to this article, various fungal infections (and they have a list of which ones) are implicated in epilepsy!! Has this come up yet in discussions? I don't remember, but it may have been that I was sleep deprived or in the midst of a crisis with Jon and missed it.
The article lists which individuals might be especially at risk, including premature birth and compromised immune system. Jon was born prematurely and most children with Down Syndrome have compromised immune systems. The article also mentioned "chronic meningitus"-- of which I have never heard.
So...definitely food for further thought and research.
1) Implications of fungal infections on photosensitive seizures (as well as other types)
2) Implications of fungal "die-off" due to probiotics and/or anti-fungal meds on photosensitive and other seizures
3) Implications of fungal infections on chronic diarrhea
At any rate, what we're going to do with the probiotics is let the present "toxin release" from bacteria/fungal die off work it's course, and then when things go quiet again (seizure wise), we'll introduce the probiotic again.