Hi Tamara,

Thank-you for your condolenses - it happened a long time ago now, in 1991, when my son was just short of his 2nd birthday.

I must congratulate you on the birth of your baby! Don’t freak out or get overwhelmed with worry: treatment is very different (better!) than it used to be. In 1991, parents were not routinely given Solu-Cortef shots to give at home, and we were only instructed to double meds for fever or signs of adrenal crisis. Our son went into adrenal crisis very quickly in response to an infection in his brain - similar to meningitis - and without any Solu-Cortef (and perhaps even WITH them ... who knows?) his little body just couldn’t fight it off.

I would recommend to all parents of CAH kids to be vigilent about giving meds, about doubling/tripling for illness and injury, and not to be hesitant about giving the shot if you are AT ALL worried (who cares what the ER people think, right?! Your first priority is a well child!). And don’t forget the Medic Alert bracelet! Our CAH daughter is 9 yrs now, and we haven’t had any problems handling her CAH.

As far as the meds go, we were told NOT to give it in the bottle: in such small amounts residue can get caught in the bottle or at the bottom of the nipple. Even this tiny bit missed can make a difference. We crushed the pill between two spoons, mixed it with 1-2 mls of water, and sucked it up into a small oral syringe. You’d be surprised that you can suck up every little bit of it! Then we’d just squirt it into their mouths, followed immediately by the bottle (or breast). It worked very well and I don’t think we ever had an instance of them spitting it out.

You’ll get the hang of it, Tamara! I know it seems overwhelming at first, but you can do it! Get as much information as you can from your endo and from this message board (which has given me more practical info that ANY doctor!) Most of all, enjoy your new little one! I’ll be praying for you both ; ) !

Wendy-Lee