My apologies to the wonderful listmothers and everyone for the off-topic
posting-------------however, collectively you are the most knowledgeable,
caring and downright brilliant group of people I have ever known ( having
been mostly a lurker, due to my lowly lay status, for over three years!).!!
My third child, a healthy 7 year old was diagnosed with Kawasaki disease
this past Monday, 8/26. I had taken him to the Ped on 8/22 ( he had been
mildly ill since 8/16 with mild fever, sore throat and lack of appetite
which at first improved and then developed new S/S on 8/21) and received a
Dx of scarlatina rash, Rx'd with Duracef. I doubted the Dx and asked about
the possibility of Kawasaki based on physical findings: persistent fever,
conjunctival injection, red, swollen lips, bright red groin rash. On 8/26,
returned, seen by NP (they always listen better to mere mothers!) and sent
directly to children's hospital, treated with IViG and ASA. Baseline echo
shows mild pericardial effusion and 1mm dilation of left coronary artery.
Next echo scheduled for 9/11.
My question: I am looking for quality info on "post Kawasaki" care,
follow-up, and most of all determination of restrictions of activities.
Many web sites abound: many are too general, "feel good" sites for parents,
advising one to "do what your doctor says". I am too independent and
hopefully too intelligent for that! Many professional sites limit access to
lay people. I am concerned re: lack of good follow-up info from the Ped
who missed the Dx originally, I have yet to hear from him at all!
If I had always taken MD advice and "shoulder patting" from them, "now
don't you worry, mommy or ask all those questions. It is my job to tell you
what to do.", my oldest's dermatologist once told me,, "go home and wean
her today," the pediatric dentist told my about my 18 month daughter, etc.
I would not have successfully breastfed my three children exclusively for
the first six months and for approx.
two years or more after introducing solids:) :) There: the BF tie-in!!
ps. BF children are normally healthier, this visit to the Ped was only
Jason's *second* for illness ever!!
(had otitis in kindergarten) The office nurse thought we had been going to
another medical office because of the lack sick visits. I tried hard to
explain that that is due to having been BF for 3 years, but, she did not
see a correlation:(.
thank you all for your time and thoughts on this frightening matter,
Nancy
lay BF supporter, mom x 3
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