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the adventures of a MAD mom

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So much has occurred since last we posted.  Casey is now a freshman in High School.  He was in 5th grade when originally diagnosed, so it has been quite a journey for him and for all of us.

In November we visited Casey’s MAD Team and made the decision to completely wean him off the diet.  So, for the past several weeks we have added 5 carbs per week to his meal plan. Once he reached 80 carbs per day, on Christmas Day, Casey had his first “regular” meal in 3 years.  Meaning, he had what the rest of us had including Ham, Butternut Squash Lasagna, Potato Pancakes and Salad.   It was nice to have our extended family around to share his first meal back in the real world .  We were all a bit anxious, but he seemed to be fine that evening and the next morning.

It was a real challenge for Casey to get all his carbs in each day.  He was apprehensive about eating so many in a day, and tended to save too many for the evening meal.  He is also used to the very limited food selection he has had for the past 3 years, so adding in new items is a little scary.  Each has to be monitored to make sure it does not cause seizures.

At first, Casey experienced a slight increase in his daily absence seizures. Then, as has been customary with a drastic change in diet, he stopped having seizures all together.  Now, we are seeing a few a day.  If he can remain off the diet is a guessing game at this point.  It has, for now, provided a little freedom in terms of planning.  We can now go out without planning each and every outing.  If something spontaneous comes up, we have a little flexibility in terms of feeding Casey while out in the world, rather than running back home for a home-made snack or meal.  I no long panic when stuck in traffic knowing I can pull off to pick up a snack or meal on the go.  And Casey is enjoying newfound freedom, too.  Sharing lunch at school, or deciding to stop and get something to eat between school and hockey practice.

Our next step is to get a full lab panel once Casey has been off the diet for a full month.  That will occur in February.  We are unsure where we will go from there, but he is in a much better place than he was 3 years and 12 days ago, as is our entire family.


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