hi,

my little girl was diagnosed swcah at 2 weeks old, after lots of tests in intensive care. She was born 7lb 10oz and is now just over 9mnths and weighs 6kg (13lb). Weight has been an issue since day one. She is on hydrocrtisone and fludrocortisone and after lots of blood tests it would seem that the hydro dose is slightly too high. Our endo said that because we are dealing with such tiny dosages he was reluctant to start messing around with the dosages and that hopefully she will grow into the dose.

Read a medical article last night that said that adult height can be subdued due to too many steroids given in the first two years of life, which obviously upset me, but at the end of the day - we have to trust our doctors, and apart from her weight she is doing great.

It’s hard to not become a bit obsessed about weight - and I totally empathise with you about the weekly weight checks etc etc - it’s a real downer, but hang on in there. We are doing ok and have been put throught the mill.

 

Kate