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the adventures of a MAD mom

modified mom, epilepsy, seizures, ketogenic diet, modified atkins diet for seizures, MAD, I’ve started to write so many times over the past few weeks, but I could never get  down on paper fast enough such a whirlwind of change.  It started with our last MAD team appointment.  As we discussed the progress that Casey had made, our nurse turned to Casey and asked if he was OK with the way things were going.  If he was OK having a few seizures a day, or if he might want to take the next step, and try the Ketogenic Diet to see if we could get the seizures under control 100%.  She explained some of the changes he could expect: smaller “looking” plates of food, weighing and measuring everything, a little more restriction on his food choices, and having to finish everything on his plate – even if he were not hungry. Oh, and a few days in the hospital to kick it all off.    You can imagine how much fun this sounded to Casey.

We all tried to explain the benefits – if it worked we would probably know within a month or two.  If not, he could go back to the MAD and the way things were.  If the Keto worked, he would have a better chance of weaning off the diet sooner rather than later.  And, we could start from a whole new list of recipes to try (ok – I get that I was grasping at straws here).  I could see he was not buying it.

So, I asked the Team – what if we started back on the MAD from scratch, using Keto as a guideline.  In other words, we would measure and weigh everything and more closely follow a ratio based diet, but incorporate some of the flexibility of MAD.  Our team agreed to let us try this – but if it did not work asked that we consider beginning the Ketogenic Diet early next year.

I bought a scale, received a crash course in Keto and started working with some of Casey’s existing meals. As soon as I began calculating, the realization that we were grossly underestimating carbs became apparent.  Little by little since starting MAD we had found new products to incorporate into the diet that had made it much more palatable for Casey to follow.  We always took care to carefully read ingredient labels and calculate out the nutritional data, but when they calc’d out correctly we stuck by them even when there was a nagging suspicion that they did not make sense. By working with our dietitian,  I quickly found that two particular products we were using daily had underestimated their carb listings by enough to double Casey’s daily carb limit.  And that wasn’t all.  There were several foods for which we were not counting – like eggs and cream, which were contributing several carbs to each meal.

For the past two weeks we have weighed and measured everything that enters Casey’s mouth.  Though we are not on Keto 100% , within a day of starting to measure more precisely we could see no sign of seizures in Casey.  This went on for several days, and I was sure my little experiment, straddling between MAD and Keto, had worked.  But sure enough, the seizures slowly came back.  Just a few, but enough to show that living on the edge of both diets is not going to be the answer.  We now enter the holidays, and the weeks leading up to our one year anniversary on MAD, contemplating our next step.  And perhaps coming up with a new name for my blog?

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