Linda, I am including a posting (taken from below) from Kelly Leight from the CARES Foundation that explains cortef and explains a little about the liquid suspension form that you may be using.  She also mentions the consensus statement for the treatment of CAH, the statement is online and  I can try to find the link for you if you are interested.  Also, Johns Hopkins has a great brochure for CAH at http://www.hopkinsmedicine.org/pediatricendocrinology/patient.html .  Have you spoken with Kelly from the CARES Organization?  You should check out their website as well http://www.caresfoundation.org    (if you’ve already seen these then just ignore it! LOL)

The amount of medication is influenced by the severity but my concern was that they had triple dosed her for 3 days and her levels still went up.  I spoke with our endo this afternoon and he said that they had not tripled her dosing long enough so we’re starting a new regime today.

Thanks so much for your response, I hope that you guys can get some answers too.

 

  Here’s the posting from Kelly:

 

Hi all,

Just so you know, the 2002 CAH Consensus Statement says,"HC [hydrocortisone] oral suspension is not recommended; divided or crushed tablets of HC should be used in growing children....HC is considered the drug of first choice."

Cortef is a brand of HC in pill form. The liquid Cortef was removed from the market due to inconsistency in dosing/mixing. I believe that concerns about the shelf life of the compounded and liquid medications as well as the consistency in dosing and mixing are the concerns with liquid preparations.

If your doctor really wants you to use the liquids, please make sure you always store them properly, do not use after the expiration date (short shelf life usually) and please shake them for a very long time each time you use them.

Best Regards,

Kelly