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the adventures of a MAD mom

weekend get-away

After a few weeks off, I am returning to the blog with great news.  Casey lived to tell about our time, and his, away from home.  My husband and I had a great relaxing weekend away, as did Casey, and we all feel more relaxed about leaving again soon.

Casey is now 6 months into the diet.  It really has become a way of life.  I no longer wake up in a panic over an item I might have forgotten to purchase at a far away specialty store or website.  I have enough MAD food in the house that I can whip up something on the fly if need be.  I spend a little time each weekend making MAD food in bulk so that we are sure to have meals and snacks for the week, which cuts down on the frantic making of breakfast before school, or dinner before hockey practice.  I no longer panic when spending the day away from home with Casey.  I don’t feel the need to pack up 1/2 the fridge “just in case”, and know that we can find something to eat while away whether it be a burger, chicken, eggs, cheese or a little fruit.

We still continue to play with and tweak the diet.  Casey continues to have a few seizures, mostly in the morning.  I found this was a common problem among other kids on the plan, so we tried the recommendation of giving Casey a nighttime snack heavy in fat – hot cocoa made with whole cream, or some whipped cream.  This seems to have cut the morning seizures down to just one or two – and many days none.  And hey, who is going to complain about having a little cream before bedtime?

Most importantly, I have found that I can trust my instincts.  When something seems to be working we stick with it.   When something doesn’t feel right, we don’t. I don’t mean to say that I make any medical decisions based upon my instincts, but food-wise I am beginning to understand that it is more important to watch the daily effects of the different foods on Casey rather than follow a strict MAD guideline.  One example of this is that our MAD team counts carbs in heavy cream.  Since, in the beginning we did not know this, Casey’s diet included an abundance of cream.  Once we found out and had to pull much of the cream from the diet he began to have several more seizures a day.  After discussing this with our MAD team, they believed the increased seizures were due to the addition of fluids to his diet (from about 45 to 75 oz/day) which might be diluting ketosis.  We tried all of their recommendations to boost ketosis over a period of a couple months (coconut oil, MCT oil, etc..) before I decided to trust my instincts and add the cream back in to his diet.  Within a few days, the seizures went back down to just a couple per morning.  Mind you, I did a lot of research before making this decision.  I consulted with other families on the plan who told me that some of their MAD teams counted cream while others did not. What really swayed me into making the decision is that Dr. Kossoff does not count the cream, and given that he has more experience than anyone with MAD patients I felt I could rely on this to back up my instincts.

For now, we just take it one day at a time.  Casey is back to his old self after two years of battling the side effects of all the different medications.  Our family life is relatively normal for a household with one pre-teen, one teen, two cats and the constant sizzling of bacon.

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