April, everything you mention we have all been through.  I think the key is to have the best possible Pediatric endocrinoligist who has treated many CAH kids.  There are so many who practice outside the "consensous regiman" established by the top endos in the world at various CAH conferences.  Cares foundation can provide this.  You need to know it and observe whether your doctors are following it.  If not, find a new Dr.  You need to observe whether ER docs and nurses are following it when you visit the ER (and if you are like us, you will as our 6 year old has averaged probably 6 ER visits per year all for adrenal issues surrounding viruses).  If the ER staff doesn’t follow established protocol, and beleive me they won’t as most haven’t heard of CAH, YOU MUST INTERVENE.  It’s always me telling the Drs what to do (regarding med times, amounts, IV’s etc.) during ER visits.  ANd it starts when you walk in the ER door.  They want to put you in the waiting room with the masses because they don’t understand what CAH is. YOU MUST INTERVENE and say NO he/she is going back now.  I hate to say it, but I most often have to become          an ---hole because nice doesn’t cut it when you are your child’s advocate in these situations.       

Regarding how long IV/IM solucortef lasts, 6 hours.  (I’m begining to wonder about your Endo, because he/she should make sure you know this).

Regarding other worries, let your child be a child with a medical condition, not a medical condition with a child.  I have recently questioned even my own philosophy as I just watched my 6 year old Tae Kwon Do green belt spar with a black belt (the black belt kicked his butt).  But, he needs to know he is just as normal as the next kid. 

 

good luck,

Andy