Saturday, September 5, 2015

Fact #5

Leukodystrophy Awareness Month
Fact #5 (see pic below)

This was textbook diagnoses with our experience with pediatricians.  All due respect to the practice, but it took us 3 pediatricians for someone to listen.  At 3 months old he was an Zantac for reflux (wrong diagnosis), we tried every  possible formula with an incorrect diagnosis of milk protein intolerance, and 2 months later of these ongoing issues, his second pediatrician said possible cerebral palsy (my background is in special education, I even know that doesn't just happen at 3.5 months old to a normal developing baby), I said a few choice words to him and went to a 3rd pediatrician.  He wasn't sure what it was, but he listened to me and sent us to Salt Lake City that night with a neurologist and doctor waiting on us (he knew the severity of the situation).  If it wasn't for him, we may not had qualified for a transplant. Knowledge (and a mother and father's intuition) is invaluable.

Do us a favor and ask your pediatrician or family practice doctor if they know what Krabbe Disease is.  I can bet you they don't and with you bringing it under their radar, they may save a life.

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