Desmopressin stopped working: Hi there, this is my... - ERIC

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Desmopressin stopped working

CherryRose13 profile image
13 Replies

Hi there, this is my first time posting, and I'm hoping others in similar situations can share advice. My 11 year old son still wets the bed. He's been using desmopressin and an alarm since October. Initially things got better (waking up sooner when the alarm sounded, and fewer wet nights) to the point where he had two weeks of dry nights! But now it's like we've gone back to square 1 with wetting every night for the last two weeks. Has anyone else experienced this? I wondered if he might need stronger desmopressin (currently on 240) but his next appointment with the pediatrician isn't until June, so I'm hoping others might have suggestions?

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CherryRose13
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13 Replies
Yaleamanda profile image
Yaleamanda

Often you have to give the desmopressin a break and start again after a week. Have you ruled out constipation, it's the guilty culprit until proved otherwise.

CherryRose13 profile image
CherryRose13 in reply to Yaleamanda

Thank you, that's helpful to know. He was prescribed movicol for a month back in October to rule out constipation and seems to have been regular since then, but the bed wetting continues.

Yaleamanda profile image
Yaleamanda in reply to CherryRose13

Unfortunately, you can pass stools every day and still be completely backed up, a full bowel will almost certainly put pressure on the bladder hence the accidents. I would recommended a disimpaction to give a clean slate to work with. you can find guidance on how to do this on the Eric Website.

CherryRose13 profile image
CherryRose13 in reply to Yaleamanda

We've tried disimpaction now (followed all the guidance properly) and it's made no difference at all. I'm so disappointed :(

Yaleamanda profile image
Yaleamanda in reply to CherryRose13

Disimpaction doesn't mean the problem is fixed, if the bowel is overstretched it takes time to get back to its normal size, a good maintenence dose of laxative and toilet habits will help, its never an over night fix.

Yaleamanda profile image
Yaleamanda in reply to Yaleamanda

When you disimpacted did you reach watery stools with no lumps consistently for three days before you started reducing the doses down extremely slowly ie one sachet every three days until you reached a suitable maintenance dose to remain on? How much water is he drinking during the day?

CherryRose13 profile image
CherryRose13 in reply to Yaleamanda

Thanks Yaleamanda, that is really helpful to know about the bowel stretching (I won't give up hope yet then!). Yes, three days of brown water and reducing the doses down slowly. He's on 2 sachets per day now which I'm guessing is a suitable maintenance dose, but not really sure as he's always seemed to be 'regular'. He's still at least one soft poop per day.

Yaleamanda profile image
Yaleamanda in reply to CherryRose13

Make sure he drinks plenty of water during the day.

CherryRose13 profile image
CherryRose13

Wow I did not know that - thank you! I will check out the website

Hopeful1234567 profile image
Hopeful1234567

This has happened with my 9 year old son lately too. I assumed he was drinking less water as it seemed to start when the weather got colder. Not sure what else to add, sorry! It's made me loose faith in the Desmopressin for the time being, so we are giving it a break too.

CherryRose13 profile image
CherryRose13 in reply to Hopeful1234567

That's a good point about drinking less water. It can be hard to get them to drink enough during the day!

14crosstitch14 profile image
14crosstitch14

Toilet right before bed we do with our girls. Toilet after tea then again half hr or so before bed. Then again right before bed. So its an hr or so after their last drink.

CherryRose13 profile image
CherryRose13 in reply to 14crosstitch14

Thanks for your reply. We do keep a bladder diary and he goes to the toilet very regularly (e.g. every 30mins) and has hourly drinks of water throughout the day, with his last drink at least 1 hour before his desmopressin

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