re: re: Family not understanding
Jun. 3rd, 2004   8:21am

hi jessica k!

i have a 5 month old son with swcah, so i cant really relate to the genital issue, but you are certainly right about getting a quicker diagnosis. my son almost died at 12 days b/c the SC newborn screen closed for the christmas holidays. his potassium was up to 11.3 at diagnosis and was having heart arrhythmias. not a pleasant experience....

anyway, i have also found that family asks me ???s like "wont he outgrow it, isnt there just some surgery to fix it and (this one A LOT) oh, will he be able to eat this or that" even though i have REPEATEDLY explained to them that, other than liking salty foods, there is no diet difference. to be perfectly honest, i am a nurse in the ICU and none of my coworkers get it either. its been really surprising!

i applaud your efforts and hope your family comes around. everyone knows and accepts a diagnosis of diabetes, asthma, etc.  but CAH is a long word with little meaning to most. i agree.....thank goodness for this website!

 

love, louise

louise
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