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the adventures of a MAD mom

Omega 3, Coconut Oil, Krill Oil, Walnut Oil for the Modified Atkins for Seizures Diet

Not great news.  After some recent lab work, we received word from our nurse last week that Casey’s cholesterol has shot up sky-high since the Modified Atkins Diet (MAD) diet began  (not surprising given a diet of 60% fat!).  But that is not the worst of it.  Calcium crystals are present in his urine, which means he may be forming kidney stones.  He will now have to visit nephrology for further testing to see if he can continue on the diet with some modifications.

The good news?  We can work on this at home, having Casey drink a LOT more fluid –  at least 75 oz. per day – and by transitioning to more unsaturated fats.  (darn, he was so loving his whipping cream and butter). We will add some fish oil to his diet, in addition to the krill oil he is already taking.

Unfortunately, in trying the additional fluids over the last several days, his ketones are now too low.  It seems the large increase in fluids can reduce the state of ketosis.  So, we have to play with the fat ratio, and let his body get used to the huge amount of fluids he now needs to consume.   (I knew this was all going along too smoothly).

Before starting the diet, we had a long meeting with the nutritionist.  She told Casey he could eat all the bacon and cream and butter he liked.  I think this is what they must promise in order to get an 11-year-old who loves food into the program.  He was so excited, since his bacon was currently limited to a “serving” size of only 2 slices.  This, because he had gained a lot of weight over the course of the past year from the various different drugs.  For the first several weeks on the Modified Atkins Diet Casey had been eating as much bacon, sausage, modified ice cream and custard as he could get into his system.  And the butter – we used it for everything.  Frying eggs, baking, drizzling, you name it, we put butter in it. 

Slowly, and over the course of the past few weeks we have had to reduce so many of these foods he loves. We had found hidden carbs in his bacon,  whole cream, and many of the items he had been eating for “free”.  We are learning to either make these foods from scratch at home, assuring there are no carbs, or to adjust our cooking to take into account all the hidden carbs. But in the mean time, it is getting more difficult to make each meal stay within the 15 carbs per day limit.  Casey remains a great sport about it all – even though I can see his disappointment as we further reduce his very limited selection of food.

On a bright note, Casey’s seizures remain pretty steady at just a few in the morning, and occasionally one or two in the evenings, but vastly reduced since starting the diet.  Some days are better than others.  So, we work our way through this maze of information, learn as we go, and hope that in the end it will all be worth the effort.

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