The More You Know

It's always good to gain new knowledge.  Shwachman Diamond Syndrome and Mitochondrial Disease are two diseases that leave nothing to the imagination.  While in Seattle, the Mito nurse gave me a list of medications that the kids are no longer allowed to take.  Never in my wildest imaginations could I have guessed the number one drug my kids can no longer take...Tylenol.

It would have been nice to know this sooner than now.  Tylenol is one of our first lines of defense against pain and discomfort along with Ibuprofen.  Tylenol stresses and even destroys the mitochondrial in  people who already have mito problems.  There are several other meds that we have used and now won't be able to.  I always wondered why the extreme side effects when the kids took the certain meds, even antibiotics.  They just didn't react like normal kids.  Now I know. 

From now on, surgery will even require a special regimen.  Anesthesiologists will have to contact the special mito team of Anesthesiologists in Seattle to obtain specific instructions on how to administer the meds during surgery.  I had no idea how careful we should be.  It presents a whole new learning curve to get use to.