5 thoughts on “Current Therapy”

1. Hello,

   I stumbled across your site, while looking for resources for my 2 year old who has just been diagnosed with intractable epilepsy. Boo… We are starting the ketogenic diet soon, and have already been doing a keto lite, as you did on our own now for a few weeks. It has already made a huge difference! One question that I have that you may alraedy know…We are thinking of adding probiotics as a supplement to her diet. Do you use those? Do you know any that would be compatible with the diet ( low carb). We are just starting on this journey, and was wondering if I can can pick the brains of more seasoned keto parents!
   Again, thanks for the blog- so glad to have some online resources!
   Sharmila

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   • Sharmila,

     Sorry to hear about the diagnosis. But happy to hear the diet has shown some promise.

     I don’t know much about probiotics. We do not give Nora a supplement specifically for this. However, she does take about 1 tablespoon of Greek yogurt each day, so that will have some probiotic content. The yogurt is mixed with double cream. We use that mixture to mix in her Depakote and give that to her in the morning and evening.

     Best of luck! Check in later and let us know how it is going.

     Reply ↓

   • Hi Sharmila,

     Boo indeed. But it’s so fantastic to have a tool like the diet that works! And it’s so tangible that it is self motivating; the results are so thrilling after seeing medication fail. Although we have a few “what the heck happened?” events in the past months, they are becoming less frequent (knock on wood). I am so happy to be making connections with other parents too. Please feel free to ask us anything about our experience.

     On supplements, we have had a hard time even finding prescription supplements that fit the diet’s requirements. I have a post about finding the right formulation for the blood acid treatment (see “the blood acid chronicles”). Look at all ingredients and question every one of them, even if your doctor’s office prescribed the medication. It seems that they don’t always look at the inactive ingredients when writing the prescription. You are the last line of defense against carbs! 🙂

     I am very wary of any supplementation unless it seems absolutely necessary. And a lot is already necessary. I don’t know much about probiotics, but I don’t have any indication that they would provide a clear benefit to Nora. I don’t know your daughter’s situation, so I would ask your dietician.

     Christy

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2. Thanks a lot!
   Maya was eating a lot of yogurt pre- diet, and that helped her stay regular. She gets more seizures when constipated, I realize, and hence the supplement.Well, I will ask the dietician when we are formally admitted on Monday, whether she really needs these.
   Thanks again- it is so encouraging to see stories of success like yours- makes this incredibly tough process a little easier!

   Sharmila

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   • We definitely observed a correlation between constipation and myoclonic seizures for Nora. Our doctor also mentioned that many of his other patients report the same.

     We control her constipation with 0.5 tsp of Miralax daily, and 8 to 12 g of fiber daily. A good deal of her dietary fiber comes from flax crackers (Flackers), high-fiber tortillas, flax meal, and avocados. She also occasionally gets 1 tsp or so of the CALM magnesium supplement in the form of popsicles.

     We had to adjust the regimen a few times, but this combination seems to be working well.

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