Does anyone have a child with cystic fibrosis or pancreatic insufficiency for any other reason?
They have started Iona on Pancrex today to see if it makes any difference as they are querying whether she has pancreatic insufficiency but we've been told the dose may need to be tweaked (they have started her on 1 capsule of Pancrex 125 dissolved in water going down her tube every 4hrs round the clock) as if the dose is too high some of the enzymes will come out of her bottom and could start to digest her skin so If her bottom starts to look sore I need to let them know straight away as the dose will need to be lowered.
When they said that I then thought what about my nappies?? I'm a bit concerned if the dose is too high that the enzymes that come out might damage my nappies so I was wondering if anyone had any experience and could advise me.
I use fleece liners in my nappies but a fair bit of the poo soaks through onto the nappy so I wondered if I should rinse them by hand in the sink when I take them off her and try and wash them every day if I can (there's only 1 washing machine in parents accomodation so there is often a queue for getting washing done!)
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