Desmopressin no longer working

Hello my 10 year old was prescribed desmopressin and told to take 1 pill at night which seemed to help for a while but then the wetting started again, we then upped her to 2 pills at night on the advice of the paediatrician . This again worked for a while but we have now had 2 wet nights in a row:( she is not due for a review until may but I was wondering if it was best to just stop the meds as they don't seem to be working or whether it's worth persevering? She has been taking them since mid Jan.

7 Replies

  • Well I think if it was me, I'd be keeping a note of wet nights vs dry nights, trying to go really big on daytime drinks, and yes keeping going with the pills - that way in May they'll know whether they need to change something or whether it was just a 'blip'.

    In our house we are overall better than we were but there are definitely wet nights along the way.

    Hope tonight's a dry one for you both :)

  • Thank you will stick with it, I don't like the thought of her being on meds but if it's going to help! Hope we get some answers from her scan in May!

  • Totally. If it's any help, we bumbled along wet most nights despite Desmo for aaaages... but getting the scan a few months ago has *really* helped us - it made it clear for the first time that she had an overactive bladder as well as not enough hormone at night, so she's now on two pills and it's made a really huge difference (touch wood!). Good luck with it

  • Thank you, it's so nice to hear that you've turned a corner with it. Gives me hope! Glad things have improved for your wee girl !

  • Thanks, we're feeling positive just now (though we still have our wet nights of course!) :)

  • Hi there, we first tried desmopressin about 3 yrs ago (after trying night alarms, lifting etc...) & it didn't work so we stopped for 6 months and then tried again. Our hospital doctor preferred starting her on the stronger dose (240?) the time he said most docs start on lower dose & build up, but he was of the opinion of trying higher first as a) you'll know if it's going to work & b) it allows you to reduce the dose if it seems to be working. It DID work 2nd time, BUT it is a "build up over time" pill, so took a few weeks to settle. We are now on the 120 dose. We tried to come off last Oct, but regressed after 2 weeks so back on it. I'm sure we'll have to try again later this year. My 9 and half daughter is on Oxybutinin & Movicol too 1st thing in the morning, which we about to embark on weaning off any day now (eek!).

  • Thank you for the info it was never explained to us how it worked and there was minimal info given with them. We are sticking with it but also looking at alternative options and possibly going to try her at the chiropractors. Good luck with the weaning sounds like you have had a worse time than we have hopefully things improve soon for the wee ones🙏🏻

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