Two of our boys have been clinically diagnosed with Shwachman-Diamond Syndrome for the last 12 years. They also have other systems involved, but we always chalked it up to them having extra things going on. Recently, after my youngest developed swallowing problems and we saw a geneticist, we started testing for Mitochondrial disorders. J had a muscle biopsy last month, but we won't get the results back until February 2010! In the meantime, we have started the Mito Cocktail because our doctor believes even with a negative test, that Mitochondrial disease is what we are dealing wth. It could be secondary to Shwachman-Diamond Syndrome or it could be primary.
Coping with a new diagnosis or an added diagnosis, is never easy. I have written a number of articles on coping and helping children cope with medical issues and chronic illness. Here are a few of them:
Growing up in the hospital can be very difficult for children. There are several medical articles published on the topic of the impact of chronic illness on childhood and the effect of frequent hospitlizations. How do we parents help our children cope with hospitalizations?
Articles that may be of help
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children, coping, mitochondrial disease, shwachman diamond syndrome
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