Oh, Chaz, that is just such fabulous news. I am soooooooo happy for you.
Jonathan had initial improvement after adding in the magnesium and fish oil, and he is still sleeping better. But tweaking the Keto diet 2 weeks ago (to increase ketosis) seemed to have a negative effect -- his ketosis did increase, but maybe too much, because now he's back up to 2 or 3 tonics a day.
So...we have decreased his diet ratio a bit, as that seems to be putting too much stress on his system, and tilting him toward acidosis. We also decreased his fish oil to every other day, since both it and the Zonegran he's on can cause blood thinning, and we have been seeing bruises (which of course are caused by him bumping into things when he has a seizure).
We also added in a probiotic several days ago. My reasoning on this (along with Robin's admonitions on gut health) was that his relapse in seizures (following 11 months seizure free) came just after he had a bad stomach virus in March followed by a sort of gastrointeritis or something along that line -- even after he shed the virus, he still had diarrhea for 2 weeks. So...perhaps that messed up his gut health (he's had diarrhea several times a week ever since), which is affecting absorbtion of nutrients and meds. So...I'm guessing that it will take the probiotic a couple weeks to have any effect.
Another thing I'm considering is calcium. He doesn't get much calcium in his diet or in his supplements, but all the testing so far has showed that his calcium levels are at normal range (last test done March 2012). So, I haven't added in calcium supplements because the Keto diet can cause kidney stones, as can the Zonegran he's now on, and calcium can add to the trouble. But when we see his neurologist on Monday, I think I'll request a blood test for that just to be sure. If he DOES have a calcium deficiency, that could certainly contribute to seizures.
As far as neurofeedback -- have been doing some experimentation at home. When Jon has night seizures, he usually gets really restless about 10 or 15 minutes before they hit. So...when he starts getting restless at night, I tuck him into bed with me, and we do this finger thing (tapping the end of my finger on the end of his finger ==like ET -- this has been a little comfort measure for him since infancy). This seems to be helpful in heading off some of the seizures. Often, he'll go right back off to sleep. Of course, it means I have to sleep lightly so I'm aware of when he's starting to get restless. I've also discovered that I can sometimes stop a tonic mid-stream but putting my hand on his chest and speaking to him in a firm but comforting tone "It's Ok, Jon Jon, Mommy's here" -- he'll be doing this wide eyed stare and scream, and sometimes he'll just stop right in the middle of a scream and calm right down. I find this rather amazing, because I've always assumed he wasn't aware of his surroundings during a seizure (he does seem to lose vision), but apparently he can hear. The interesting thing is that I've been doing this for about a week, and the other day he had a seizure, and was in the other room, so it took me a few seconds to get to where he was, but he apparently stopped the seizure on his own -- he screamed out twice, and on the 2nd scream -- stopped mid-scream, and by time I got in there he was settling down. Maybe he's self training?
, considering his results, he was more than happy to go forward…
