KarenB
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:woot::banana:
Jon's last "big" seizure was one year ago today! (He had a couple episodes that may have been absence seizures when coming out of anesthesia in September, which is why the 99.5%). But we've waved goodbye to the tonics and tonic-clonics!
Next week will also be the 3 year anniversary of being on the Ketogenic diet. We had 1 year of being seizure free (after the first 6 weeks on the diet), and then the train derailed after an intestinal flu and change to diet (increased calories and carbs -- now we know that has to be done more gradually), he started to have multiple tonic-clonics and tonics every day, and it took 10 months to get back on track! But thanks to to encouragement and shared research of the great people here, we've regained seizure freedom.
We're back in the U.S. again -- in NY now, and Jon sees the wonderful docs at U. of Rochester (Strong Hospital) - -they are absolutely fabulous. He had some other medical issues that cropped up this summer, but has been doing great with regard to seizures.
Here's his regime:
1) Ketogenic diet with ratio of 3.5:1 (fat to carbs/protein)
2) Zonegran (Zonisamide) currently at 175 mg/day. He was at a high of 250 mg/day a year ago, and has been weaned down to this in past 6 months. This is his only seizure med. It's tricky using this med w/ the diet because of acidosis -- Jon has to drink 8 cups of an electrolyte solution (8 cups water mixed with Cytra-K, baking soda, lime juice, Stevia) every day and have his bicarb levels checked regularly.
3) MCT oil - 7 grams per meal
4) Supplements: multi-vitamin, calcium powder, zinc, fish oil, magnesium
Jon's last "big" seizure was one year ago today! (He had a couple episodes that may have been absence seizures when coming out of anesthesia in September, which is why the 99.5%). But we've waved goodbye to the tonics and tonic-clonics!
Next week will also be the 3 year anniversary of being on the Ketogenic diet. We had 1 year of being seizure free (after the first 6 weeks on the diet), and then the train derailed after an intestinal flu and change to diet (increased calories and carbs -- now we know that has to be done more gradually), he started to have multiple tonic-clonics and tonics every day, and it took 10 months to get back on track! But thanks to to encouragement and shared research of the great people here, we've regained seizure freedom.
We're back in the U.S. again -- in NY now, and Jon sees the wonderful docs at U. of Rochester (Strong Hospital) - -they are absolutely fabulous. He had some other medical issues that cropped up this summer, but has been doing great with regard to seizures.
Here's his regime:
1) Ketogenic diet with ratio of 3.5:1 (fat to carbs/protein)
2) Zonegran (Zonisamide) currently at 175 mg/day. He was at a high of 250 mg/day a year ago, and has been weaned down to this in past 6 months. This is his only seizure med. It's tricky using this med w/ the diet because of acidosis -- Jon has to drink 8 cups of an electrolyte solution (8 cups water mixed with Cytra-K, baking soda, lime juice, Stevia) every day and have his bicarb levels checked regularly.
3) MCT oil - 7 grams per meal
4) Supplements: multi-vitamin, calcium powder, zinc, fish oil, magnesium
