What happens when desmopressin wears off after the 8 hours?

[shellyx82]

Hi I'm new here. Question about desmopressin.

My 6 year old just started and has had it twice but still wet in the morning. He has started on one melt. He has been dry when I check through the night before I go to bed, which is an improvement on before. I know it lasts 8 hours but he sleeps longer than that so I want to know what happens when it wears off - could he be peeing when that happens? And how do you deal with that?

Very early days and we have to increase the dose if no change after a week.

He has never been dry at night and is a very deep sleeper.

Thanks

[Blueycat]

I can’t help I’m afraid but my 8 year old has just started on it, also been only 2 days. He has still been wet in the morning but I wonder if it has a cumulative effect & you have to take it for a while before seeing an effect?My son is on 240mg (2 x 120mg). So I am interested in any answers to this too.

[shellyx82 in reply to Blueycat]

It's good to know someone in the same position. Why did your son get started on the higher dose? We will be increasing if no joy this week. Good luck!

[Blueycat in reply to shellyx82]

We were told to start on 2 tablets (which was this weekend) & if dry after 3 weeks then reduce to 1. So obviously doing it the other way round to you!

[shellyx82 in reply to Blueycat]

Hi how are you getting on with the desmopressin? We went up to two tabs on fri and he is still wet!I'm wondering if he is peeing after it wears off as he sleeps longer than 8 hours. x

[Blueycat in reply to shellyx82]

It’s not really doing anything for him, even on 2 tablets, he’s still wet in morning. And he is often wet before the 8 hours is up so it’s not just happening after the medicine wears off. Going to continue with it for another couple of weeks & then maybe ring the consultant.

[shellyx82 in reply to Blueycat]

How do you know he is wetting before the 8 hours is up? My son wears pull ups and I have been trying to check. He is going longer I think before wetting and I havn't been able to pin point when he is going.Yes I'm going to persevere then phone them. It's such a shame, he is getting disheartened after being excited about getting started on the meds. I am gutted too, really thought it would work!

[Blueycat in reply to shellyx82]

My son is in pull ups too but when I come to bed I just check on him & I can often smell that he has gone in the pull up, & also a couple of times he has woken up in middle of the night & is wet even with the pull up on 😞. We were both really hoping this would work too. Obviously not at the moment, but before lockdown he had started to go to a couple of sleepovers, & would be great if i didn’t have to have a discreet word with the parents/ beaver leaders etc beforehand! I just hope it improves. Good luck!

[shellyx82 in reply to Blueycat]

Yeah I have been checking too. This morning I had to wake him for school (he never wakes during the night) and he was wet. I was starting to consider if he was doing it deliberately when he woke. It's so frustrating.Good luck to you too! x

[shellyx82 in reply to shellyx82]

Hi how are you getting on? We have now finished 1 week on 1 tab and 1 week on 2 tabs. Still wet!Had to order more from the doc but don't know how long we should be persevering before I contact the paediatric nurse.

Really thought we would see some improvement.

[Blueycat in reply to shellyx82]

Sorry only just seen this. Well my son still has a wet pull up in the morning but it is much reduced, although some mornings are better than others. We haven’t had any times since a few weeks ago where the bed is wet, so he is definitely producing less wee in the night, but not totally dry! So just going to continue until after Christmas now & then see where we are in the new year.I’ve stopped checking him when I come to bed as a few times I’ve woken him up accidentally, so I don’t know if he is mainly weeing in the morning when the tablets have worn off (like you originally mentioned) or if it’s earlier in the night. But as we’re seeing a bit of improvement we’re just going to continue with 2 tablets for now. Hope you start seeing some improvement soon 🤞