by KitKat » Sat Jan 19, 2019 6:49 am
Hi Susie,
Welcome to the forum. Diagnosed from birth, wow, that must have been heart-stopping. Congratulations on getting your beautiful little girl this far on her life's journey. I gather it's more typical for a congenital condition called CAH to be diagnosed in the first few months, where most pituitary conditions are picked up later in life.
I have met one set of parents whose wee boy was diagnosed with CAH at around 2-3 weeks old. I am recalling they had some anxious times and getting an emergency admission if he was unwell is something that became easier with practice. Having a Care Plan draws up with your specialists that you can show to the admitting doctors is, I gather, a big part of this as it is a rare condition and many ward nurses are not familiar with adrenal conditions or steroid-dependence. (Nurses outside endocrine wards can tend to assume it is like one-a-day prednisolone for suppression or inflammatory conditions, and that the timing doesn't matter). I am also recalling that getting trained so they were confident to give him an emergency injection of hydrocortisone before calling for an ambulance was a big milestone for these parents in terms of peace of mind. I think he was about 2 when he got a vomiting bug and they gave him the injection themselves for the first time.
Best wishes
KitKat