My five year old girl has SWCAH and always wants to eat huge amounts of salt with every meal.  Her favourite thing is soy sauce and she drowns all her food in it - yuck!

I know that SW need to keep their salt levels up but surely if she is taking the correct amounts of fludrocortisone (we are in the UK) - her plasma renin activity is always fine - then she shouldn’t need so much all the time?  I wonder to myself whether her taste for salt has just become a habit and she is consuming more than she should.  Does anyone else have experience of this?

Also her 17OHP levels are always too high - she is on 7.5 in the morning, 5.0 early afternoon and another 5.o at night, which seems alot for her and her consultant wants to increase them again.  I wondered whether there might be some link between excess salt intake and a need for more hydrocortisone.  Are there any parents who have had these problems?

 

Thankyou very much

Sarah