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the adventures of a MAD mom

Casey with Greg Grunberg at the Epilepsy Walk LA October 2010

Casey with Greg Grunberg at the Epilepsy Walk Los Angeles 2010

The reason you are probably following this blog is to find out “does the MAD diet work?”. Well, that’s a long story. I went into this really hoping it would work, given that we didn’t have many other options. After exhausting 9 medications, we were up for trying anything. After all, who wants to watch your child have seizure after seizure day after day? So, we went into it hoping, but not exactly believing that eating large quantities of fat could stop the seizures that giant pharmaceutical firms could not.

However, when the doctor presented us with the percentages: less than single digits that another drug would work, vs. 30+% that the diet might at least lessen the seizures, we were more than willing to try. I was also very happy to take Casey off the meds given the terrible side effects he had experienced from most. He had gone from crazy-hyper to catatonic, and everywhere in between during the previous year.

Maybe because we had done so much research and pre-shopping/cooking, the diet kicked off much easier than expected. Casey actually enjoyed trying the new foods. He liked shopping with me, reading the labels, finding items that I might not have – he was going to be the one eating these things, so he had a high motivation. We perused The Charlie Foundation website, Atkins books, and just generally surfed the internet for recipe ideas. It was all just a bit too easy – other than the extra time to prepare the meals.

So, no one was more surprised than I when within a week the seizures decreased from 50+/- per day down to just a few in the mornings. It was unbelievable. A miracle, really. After a year and a half of battling this, just a week of changing his diet could make such an impact. I was sold. Whatever we had to do we would make this work. We began serving Casey on fine china, letting him use a fancy champagne glass to drink from, whatever he needed as motivation, it was his. And he remained motivated. His energy level came back. He was more focused. The seizures had really taken a toll, and he could see that he was feeling more like his old self. His teachers reported that they were not seeing seizures in class. His friends did not see them on the PE field. The few seizures he did have in the mornings were so subtle that my husband and I could barely determine if they were actually seizures at all.

Then, suddenly, just 3 weeks into the diet, the seizures started coming back. A bit longer in the morning, one here and there in the afternoon, and a couple more in the evenings. One morning he had 25 before he left for school. We fortunately had our first follow up appointment scheduled at the 4 week mark, so we were able to discuss this with our MAD team. They assured us that this was normal. Everyone reacts differently to the diet, and they were highly encouraged that we had seen such great progress so early on. We had committed to trying the diet for 3 months before making any decisions, and the reason for this they assured us, was because there was some fluctuation during this time while the body was getting used to a new way of eating.

Our dietitian reviewed our food diary, and had a few ideas on why we might be experiencing some changes in the seizure activity. We had not been counting the carbs in the cream we were using, and Casey had recently started using a lot of it in the form of whipped cream. The label stated that there were 0 carbs, when in actuality there might be as many as 1 per tablespoon. When you only get 15 carbs a day, that is high. So, just when we thought we were getting it down, we are basically starting over on our daily carb counts and food diary and we will see what happens. He is still experiencing fewer seizures each day than before the diet, and fewer than while on any of the drugs, so we remain encouraged.

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