Be prepared...
Nonperishable SCD emergency food

I came home yesterday to find a food pile on our kitchen counter. Larabars, jerky packs, raisins boxes, nut baggies, etc., many covered with lint and dust, some partially squashed, some expired.  As it turns out, all were salvaged from the bottom of the teen’s backpack. Sigh.

...continue reading "Even nonperishables eventually perish (diet emergency food)"

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Will you be informed of serious health issues after your child turns 18? Would you be able to help if needed?

At age 18, teens gain legal control over all their healthcare information. HIPAA privacy laws prevent parents from accessing their child’s information and restrict a parent’s ability to influence medical care.

When parents send their teens to college they assume that, after paying for tuition and for health insurance, they will have the right to be informed and consulted in case of an accident or when a severe health challenges arises. NOT SO!

...continue reading "Young Adults and Healthcare Privacy Laws"

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Maintaining SCD (or other restricted diets) can be done away from home.
Sleep away summer camps are the highlight of every summer, and our son loves them. CCFA Camp Oasis is his favorite every year. He travels to camp with a week’s worth of SCD meals, all packed in large coolers for the long drive, and labeled meticulously so the wonderful kitchen staff knows exactly what to serve him each day. We start preparing a month before camp, cooking large amounts of food, freezing single portions, labeling everything, and printing a detailed menu guide.
Here are the menus for food we sent to summer camp in the past few years:

WP_20130621_001 WP_20130623_001 WP_20130623_005

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