ADVISING ON ATYPICAL KD

General discussion regarding Kawasaki disease
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marinamom
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ADVISING ON ATYPICAL KD

Post by marinamom » Fri Jan 01, 2010 8:07 pm

FORUM PARENTS

PLEASE BE CAREFUL WHEN ADVISING PARENTS WITH KIDS WHO HAVE SUSPECTED KD THAT THE 5 CLASSIC SIGNS MUST BE MET. ATYPICAL KD DOES OCCUR (ESPECIALLY IN OLDER CHILDREN AND BABIES) AND CAN PRESENT WITH AS LITTLE AS A STOMACH ACHE. THESE ARE VERY OFTEN THE CHILDREN WITH SERIOUS COMPLICATIONS -- SOMETIMES AFTER TRYING EVERYTHING KD IS ONLY CONFIRMED ON ECHO BY SEEING ENLARGED ARTERIES. ALL FEVER OF UNKNOWN ORIGIN (MORE THAN 4 DAYS) SHOULD BE SUSPECT AND RESULT IN STAT LABS (INCLUDING ESR AND CRP) TO SEE WHA'T'S GOING ON. ALSO STREP IS THROWN AROUND ALOT BY SOME DOCS WHO DON'T EVEN DO A STREP TEST (RAPID IN OFFICE FOLLOWED BY CULTURED). ANY RASH SHOULD BE CAUSE FOR STREP TEST AS WELL AS SORE THROAT. I REALLY WISH THERE WAS MORE GENERAL EDUCATION FOR NEW PARENTS AND EXISTING PARENTS ON KD -- I AM WORKING ON IT BUT FRANKLY PART OF THE ISSUE IS THE KD FOUNDATION AND FORUM RESISTANCE TO SAYING WE ARE PROVIDING MEDICAL ADVICE. I AM A HEALTH CARE LAWYER -- SHARING YOUR EXPERIENCES IS NOT HEALTHCARE ADVICE -- BUT IS FAR MORE DANGEROUS IF PEOPLE ARE NOT EDUCATED ON KD. I KNEW NOTHING OF KD WHEN MY CHILD HAD IT UNTIL I SPENT THE PAST YEAR WORKING ON A PATIENT EDUCATION, INTERVIEWING KD DOCTORS, READING MEDICAL JOURNALS AND I STILL NO VERY LITTLE OTHER THAN WHEN TO QUESTION WHAT THE DOCTOR IS SAYING - BECAUSE THAT IS REALLY THE BEST YOU CAN DO.

khalesmeme
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Re: ADVISING ON ATYPICAL KD

Post by khalesmeme » Tue Aug 02, 2011 9:09 pm

We would be so thankful to know of what you have found out. This is new to our family. Our
grandson was diagnosed 3 months ago and we are lost.

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