KarenB
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OK, so we're meeting with the neurology team today, and sort of hit a brick wall, because we've pretty much worked out way through all the meds out there -- right now he's on Zonegran and Diazepam, and can't go any higher on either of those. He's at maximum ketosis on Ketogenic diet -- can't go any higher without going into metabolic acidosis (on the verge of that right now).
We have seen some improvement -- maybe about 50% -- with the meds and tweaking the diet, but he's still have about 1 tonic seizure a day.
So...we start discussing supplements...doctor approved our addition of magnesium, and said he often finds that helpful with migraines. Cautioned about fish oil because it can cause blood thinning, as can the Zonegran, so 2 together may not be safe. But Jon can just eat fatty fish several times a week.
Anyway, the pediatric neurologist mentioned that he had a patient -- like Jon, they'd been through EVERYTHING they could do medically, to no avail, and they were about to do surgery, when the Mom came across some research on GABA rice, and they decided to give that a whirl, and wouldn't you know it, the child's seizures stopped overnight, and my doctor said that patient -- who had intractible seizures -- hasn't had a seizure since, and it's now been 11 months.
GABA rice is rice that has been sprouted, and apparently it's all the rage here in Asia -- the Japanese have been doing a lot with it, and I have no idea if any studies have been done on it and epilepsy, and if so, they may not be published in English, and I'm not even sure if it's an option for us, because I don't know what the carb content is, and Jon's on the Keto diet.
But anyway, I'm throwing it out there for the rest of you guys -- yes, it's one anecdotal report -- BUT -- a report from a neurologist who has been treating this child for years.
I guess you can buy the GABA rice from health food stores (for a pretty penny), but apparently you can also grow your own at home from whole grain rice.
If anyone decides to give it a try, I'd love to hear a report.
We have seen some improvement -- maybe about 50% -- with the meds and tweaking the diet, but he's still have about 1 tonic seizure a day.
So...we start discussing supplements...doctor approved our addition of magnesium, and said he often finds that helpful with migraines. Cautioned about fish oil because it can cause blood thinning, as can the Zonegran, so 2 together may not be safe. But Jon can just eat fatty fish several times a week.
Anyway, the pediatric neurologist mentioned that he had a patient -- like Jon, they'd been through EVERYTHING they could do medically, to no avail, and they were about to do surgery, when the Mom came across some research on GABA rice, and they decided to give that a whirl, and wouldn't you know it, the child's seizures stopped overnight, and my doctor said that patient -- who had intractible seizures -- hasn't had a seizure since, and it's now been 11 months.
GABA rice is rice that has been sprouted, and apparently it's all the rage here in Asia -- the Japanese have been doing a lot with it, and I have no idea if any studies have been done on it and epilepsy, and if so, they may not be published in English, and I'm not even sure if it's an option for us, because I don't know what the carb content is, and Jon's on the Keto diet.
But anyway, I'm throwing it out there for the rest of you guys -- yes, it's one anecdotal report -- BUT -- a report from a neurologist who has been treating this child for years.
I guess you can buy the GABA rice from health food stores (for a pretty penny), but apparently you can also grow your own at home from whole grain rice.
If anyone decides to give it a try, I'd love to hear a report.
