Mother of daughter with hypopituarism

[member_45179]

Hello

It’s my first time posting on here, I became a member last month. It’s nice to have somewhere to get info/advice etc.
My name is Susie and my daughter Marnie has hypopituarism, she was diagnosed from birth. 19 months old now.
It would be great to hear other parents stories (we haven’t met any other parents yet)
You can always email me if you prefer. sdking26@hotmail.com
Thank you

Susie.

[member_45179]

*hypopituitarism! My phone always misspells!

[steve]

Hi Susie,
Welcome to the forum.
Regards, Steve

[KitKat]

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