Sorry haven’t been on the board for a couple of days.  I will look for the link for you, and post it. Yes I am from the UK.  Have you tried splitting the dose of fludro to morning and night?  With my child we found the hydro was metabolised very quickly and therefore was not lasting from dose to dose. We then went to 4 doses a day and managed on a lower dose of hydro.  For this your daughter would need a 24 hour profile.  They can test to see how much sodium is being passed out in the urine. The UK has an excellent support group, http://www.cah.org.uk/ . It maybe worth getting a second opinion, just to put your mind at rest.