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Original poster

Desmopressin for bedwetting

57 replies

payingfortime · 10/01/2020 11:32

I think the time may have come to start to consider this drug for our DS7. We have been really reluctant to consider giving any type of drug to our little boy but this is getting ridiculous and he needs help.

We have tried everything the nurses / doctor has suggested (and other things besides) but nothing works. He wets every night.

The only thing we decided against trying was an alarm because he sleeps very deeply, a bomb could go off and he would still be snoring.

Has anyone had any experience of this drug? Did it work? How long did your child have to take it? Were there any side effects?

I have / will be reading and researching but I would like some personal experiences if I can, to make an informed choice.

Any advice would be welcome

TIA

OP posts:
Jackiebrambles · 10/01/2020 13:09

Joining this thread as my DS is almost 7 and still wetting every night too.

He's still in night time pull ups because we tried about a year ago for him to sleep without and he wet and didn't even wake so I just thought he wasn't ready. But I keep reading and wondering about whether we should go to see someone about it.

I really feel for you OP because I just could not cope with the wet sheets/bed so I've kept him in the pull ups but worry I'm letting him down not getting this sorted.

palomapear · 10/01/2020 13:11

It's a long while ago but I think it's the tone of the alarm, not just the volume. And it's incessant!

I don't think you could have found a deeper sleeper than him
I remember one night DH and I were trying to wake him to see a meteor shower. He'd seen it was about to happen on TV and was desperate to see it. But the 2 of us talking to him and (gently) shaking him and he just stayed asleep.

I think we kept a potty in his room so he could get up and wee and then he went back to sleep.
After about three days he never woke in the night again. Up there with great value for money well spent!

Original poster
payingfortime · 10/01/2020 13:14

Jackiebrambles - I was the same as you, tried without pull ups when he was 6 but when that didn't work I thought, hes not ready and went back to pull ups. Just before he turned 7 he started wetting in the day, we got the doctors / school nurse involved at that point and that's when they started saying don't use pull ups.

In a way I'm glad he had the day time wetting problem because it meant we got referred to the enuresis clinic, and I do feel that it's time we got it sorted with their help.

Perhaps if you logged it with the GP, so that if it turns into a long term problem, you will have already been? Maybe you will also be referred to the enuresis clinic?

OP posts:

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Children's health General health
YippeeKayakOtherBuckets · 10/01/2020 13:15

DD took it for about six weeks aged 8 and it worked from the first dose. No side effects.

Molly357 · 10/01/2020 13:15

When my son was 7 we started desmopressin but needed higher dose. We used pull ups for a few months to reduce the stress. Then took them away once accidents reduced. Now almost 8 he no longer needs the drugs and is completely dry at night. It’s almost like his body just needed a kick start to help

Original poster
payingfortime · 10/01/2020 13:16

I think we kept a potty in his room so he could get up and wee - this is a great idea

Yep, my DS is the same. Nothing will wake him, I remember we tried the whole "midnight wee" thing...we'd lift him out of the bed and sit him on the toilet, all the while he would be sound asleep!

OP posts:
ScatteredMama82 · 10/01/2020 13:16

We started it for my DS1 about a year ago. He wasn’t wet every night but it was really unpredictable and he was going on a residential trip. It has worked a treat, from the first night he took it he wasn’t wet. No side effects. Just be careful not to let him drink after he takes the tablet. My son did once and the next day he had a headache and was sick.

Original poster
payingfortime · 10/01/2020 13:17

Yipee and Molly, thank you. I love a success story!

OP posts:
Original poster
payingfortime · 10/01/2020 13:17

Great stuff Scattered, thank you for sharing

OP posts:
56Marshmallow · 10/01/2020 13:25

@payingfortime honest to God! Sometimes these "professionals" don't seem to have a clue. I can't believe their advice about the pull ups! Fair enough, try it but if he's still wetting after being off them for a week then that just makes life harder for everyone! They're not the ones having to do the washing or wake up to wet sheets!

Definitely go back to pull ups. My boy is 9 and using Desmopressin is the next option for us. However, he still has difficulties during the day so not sure if that affects it or not. My boy is a big lad and the largest pull ups aren't going to fit him for much longer.

Thatagain · 10/01/2020 13:34

My DS had this issue all his childhood. I took him to the doctors on several occasions every year wondering what was wrong. There was no pricription given. I used the dry night bed sheets. That helped him feel more comfortable. He eventually stopped when he was 13y. The doc said how common it was and there was nothing to worry about and he didn't need anything. I was fuming as I wanted it to stop.

AGnu · 10/01/2020 13:50

Thanks @UnaOfStormhold, we've tried the things advised on the ERIC website & it's definitely not constipation or any physical issue, he just refuses to use the toilet when he doesn't want to go! We asked to be referred to a paed to investigate further, particularly the possibility of ASD/PDA but the GP insisted on referring us to a urologist who listed all the strategies we've already tried, ummed & ahhed a bit & said they couldn't see how they could help us & the possible ASD issue was outside their remit so we should talk to our GP... Who's obsessed with the continence issue & can't seem to see how it could possibly be a symptom of a wider issue. We're going to ask to see a different GP but have to get the mental energy to be ready for explaining it all yet again to yet another professional who will probably just fob us off with "have you tried a sticker chart?" Hmm

UnaOfStormhold · 10/01/2020 18:02

Oh god, yes, to "have you tried a sticker chart!". Though a vibrating watch has definitely helped a bit because it prompts him to go without us reminding him all the time! The effect wore off a bit but it's still a very useful tool in the arsenal.

gerbo · 10/01/2020 18:14

My son is only just dry at 9.5. One GP grumpily told us I should've been to see her already when he was 8 Confused. I felt irritated by her tone and saw another GP who said he was still young, to relax, not make an issue about it and wait for the hormone to kick in.

It did. I also spoke to several friends with boys confidentially and they confided their boys were also not dry!

Perhaps back to pull ups to reduce stress for everyone?

Oly4 · 10/01/2020 18:25

Surely all this is raising his anxiety which is making the wetting worse? Personally I’d go back to pull ups and wait it out at least another 6/9 months to reduce his anxiety. Then consider drugs if things are no better.
I’m only saying this because I was taken to the GP for a “problem” aged 9 and I’ll never forget how embarrassed and ashamed I felt.. not to mention that it made me feel like my parents loved me less..

GeriAtric · 10/01/2020 20:32

I'd go back to pull-ups too, op. My ds was 7 when he stopped bed wetting. He went from waking up with pull-ups that were so sodden they'd thump to the floor to being bone dry over night. And he hasn't had a single accident since. I thought it would never happen and was considering the medication but at the same time felt reluctant to medicate. Honestly, it came from nowhere. That magical hormone obviously just kicked in.

WelshMoth · 10/01/2020 20:49

DD is 14 on Monday and is still on the max dose of desmopressin. They work fine but she simply isn't producing the natural vasopressin needed to suppress urine production at night.

On the advice of the enuresis nurse, we occasionally take her off it for a week but she has to resort to pull-ups as the wetting returns.

We've tried sleepwalking her to the loo which works but it's exhausting for me as there's no let up. We've also tried the alarm - she sleeps right through and will eventually wake when she realises that she's stoned through.

Desmopressin was her saviour with residentials and sleepovers with friends.

She doesn't have incontinence during the day but she certainly has very little warning before her bladder goes from slightly full to "OHMYGOSH I NEED THE LOO" panic. She's therefore on toilet mapping alert at all times.

We've never had hang ups about this - even when our nights were filled with guaranteed waking me bed changing. I've never EVER allowed her to feel shame for something she isn't in control of. That said, it occasionally gets her down and she asks me when she'll be rid of the desmomelts. She's so capable in all other aspects of her life and she sees this as her failing. Sad

WelshMoth · 10/01/2020 20:50

*soaked through

ChanandlerBongsNeighbour · 10/01/2020 20:58

I was prescribed it in nasal spray form myself as a child and needed to use it every night until well into my teens . It was my miracle solution! Never a wet night whilst using it, a few embarrassing slip ups where the excitement of sleepovers etc meant I forgot to take it (and faced the consequences!Blush).

My own DD was still wet at nearly 8years old and I naturally assumed she inherited it from me and would need a similar solution. However, she responded immediately to the programme given by the enuresis clinic alongside an alarm and was dry on her own within weeks. But, I wouldn't have hesitated to use desmopressin if necessary!

zonkin · 10/01/2020 20:58

I have 4 DC and one had very bad bed wetting until 14ish. The alarms were a waste of time. He just slept through the alarm or turned it off and went back to sleep. The sleep walking to the toilet didn't work either. We used Desmopressin for sleepovers and school residentials only and it does work.

We were advised by several doctors (both NHS and private) that the Desmopressin shouldn't be relied on as a daily thing all year around. The relentless washing of sheets really did get to me tho and I can understand the desire to use it all the time.

It just suddenly seemed to stop, so that I noticed I'd be washing the sheets every few days, then once a week, and then doing it once a week even though he hadn't bed wet. And the day I realised that he didn't need a waterproof mattress cover I nearly cried with relief.

zonkin · 10/01/2020 20:59

And we also used it for family holidays as I couldn't face bedwetting every night when abroad.

QueenOfOversharing · 10/01/2020 21:17

My DS didn't have any joy with desmopressin, I'm afraid. We - like all of you - tried everything & nothing helped. He refused to go on any sleepovers or things with the school. It's was horrible seeing him so fed up with it. We tried the no pull-ups thing & I couldn't keep putting him through it. He didn't stop, reliably, until he was about 16.

He had a lot of other health problems, and this just added to it all. Like OP & PP have said, my DS was a very deep sleeper and consultants & enuresis clinic said there's a link between those, in their experience.

Sorry our tale isn't as positive, but we got through. Good luck with the meds!

nothingcanhurtmewithmyeyesshut · 10/01/2020 21:28

I honestly wouldn't be too concerned at 7. Back to pull ups, take the stress and pressure out of it and if in 6 months or a year he still isnt dry then take another look at it. Some kids, mostly boys in my experience, don't produce the hormone until their teens. I cant remember who said it but someone told me that if they aren't producing the hormone by age 6 then they wont until puberty kick starts it.

LifeInAHamsterWheel · 10/01/2020 21:38

Best thing we ever did for DS. He was 9 at the time and was on it for about a year (reducing the dose gradually) with great success and no side effects. He was in pull-ups at night until he started on the meds, no way would I have let him sleep on wet sheets night after night (nor could I have coped with the washing!)
He had terrible problems with constipation up to then as well, the consultant explained how it was all connected.
He's completely "normal" in all his toilet habits now Grin

littlecabbage · 11/01/2020 21:05

Reading this thread with interest. DS age 8 has had urinary issues since we tried to toilet train him at 3yo. He was under a consultant till about a year ago. It's never been constipation related, and not an overactive bladder either. It was diagnosed as some kind of "voiding dysfunction", causing him to not fully empty his bladder and therefore get urges often, and urgently. This resulted in daytime wetting, and he was never dry at night.

About a year ago, there was a sudden huge improvement in his daytime bladder function and he no longer has to wear pads during the day. There was no obvious reason but it is thought that his bladder system has just matured somehow.

But he is still in pull-ups at night and they are always wet the next morning. On 1st Jan, we started using an enureis alarm, although have it set to vibrate and flash only. He is not a deep sleeper, and it is waking him once a night. He comes in to me and we get fresh pants (pull-up over top of pants and sensor) and plug the alarm back in. So he isn't sleeping through it, but is not starting to wake by himself when needing a wee, after 11 days.

I don't know how long to persevere with it. He has a 2 night residential trip with the school in April, and your (mostly) positive tales of desmopressin are making me think I'll request it from the GP if no joy with the alarm after 3 weeks or so.

The thought of a late-night wrestle in the dorm leading to someone discovered DS has a padded bottom (the pull-up) is a real worry. He would be mortified.

Flowers to all still having problems.