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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:
Clymene · 10/01/2020 11:53

Yes and it worked brilliantly. We started on a low dose and that didn't work so he went to maximum. I think he used it for about 6 months and then he taper off. I think he had one accident after that.

Original poster
payingfortime · 10/01/2020 11:55

Oh thank you for replying, and with a positive story too. How old was your DC when they took it?

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TreacherousPissFlap · 10/01/2020 12:20

Not strictly the same but I had a dog prescribed it once, he had to have the drops put daily in his eyes.
It was eye wateringly expensive and the dose was so small I simply couldn't see how it would work, but it did.

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JacquesHammer · 10/01/2020 12:21

DD took it, we never progressed above the smallest dose and it basically solved the issue.

Original poster
payingfortime · 10/01/2020 12:25

Thank you both. Again, positive reviews. I am starting to feel hopeful.

DS has been out of "bedtime pants" for over 6 months now, on the advice of the school nurse / enuresis clinic. We have to wash his sheets and bedding every day. The smell is bad and DS gets embarrassed. I know he would like to go back to the bedtime pants. Our next appointment is beginning of Feb, where is will be prescribed the meds. Would you allow use of bedtime pants again up until the meds kick in?

TreacherousPissFlap - amazing username btw

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Clymene · 10/01/2020 12:26

I think he was nearly 8. We went to see the school nurse as soon as he turned 7, went through all the suggestions and appointments and then went to the GP for the prescription. That's the process where we live but it differs from place to place

MartyrGuacamole · 10/01/2020 12:28

My dd was prescribed them, she used them at the max dose for 6 months and they never made a difference. I'm so sad for her. She's embarrassed and fed up too but I've explained her body just isn't ready. The gp says there isn't anything else she can do. Dd had no side effects from the meds though.

JacquesHammer · 10/01/2020 12:30

The gp says there isn't anything else she can do

Have you had a second opinion? The GP told us that if the tablets don’t work they can refer us on for further investigation/treatment.

Orangesandlemons82 · 10/01/2020 12:32

I was really reluctant to try it with my 7year old son, but we had tried everything else. It is amazing! He has had it 4 weeks and no wet nights since starting. He is really happy and looking forward to a residential trip in September now.

Original poster
payingfortime · 10/01/2020 12:38

MartyrGuacamole - I'm so sorry to hear this, your poor DD. It can really get you down, can't it? As PP said, maybe a second opinion, or ask the GP to refer you to a enuresis clinic?

Clymene - similar to our journey

Thanks to all for sharing. Sometimes its just feels like it'll never end, so reading some success stories is good

OP posts:
Clymene · 10/01/2020 12:39

I still night time pants until the desmopressin kicked in. Why wouldn't you? If he's wetting the bed every night that's miserable for everyone. Him wearing them or not won't make any difference to the bed wetting.

Clymene · 10/01/2020 12:40

Sorry autocorrect rubbish there. Hopefully makes sense still

palomapear · 10/01/2020 12:45

Try the alarm.
Not the one that clips on the pants. The sheet one.
My DS would sleep so deeply he would literally fall out of bed and still be asleep.
We were on the waiting list for one from the school nurse but we bought one. It wasn't cheap but still cheaper than all the washing etc.
Worked in a few days.

Original poster
payingfortime · 10/01/2020 12:46

Clymene - I agree! But we have been told at several different time and by at least 2 different "professionals" that we should not use pull ups. They were very clear about this. And we have been washing sheets and DS every bloody morning since then. Its so tiring. Its so smelly. We are spending and wasting money and energy on washing every day. I want it to stop.

Fuck it - back to pull ups.

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AGnu · 10/01/2020 12:47

Is it exclusively for night-time wetting or can it be used for children who have issues in the daytime too? I suspect ASD/PDA issues as well but no-one seems to be taking us seriously about that either.

ScottishBadger · 10/01/2020 12:49

My 8 year old takes dermopressin but it's only for occasional use such as sleepovers/holidays. The paediatrician was worried about impact on kidneys if taken full time

Original poster
payingfortime · 10/01/2020 12:50

palomapear - can you please explain just how it worked!? I can't imagine anything waking DS up in the night, I really can't!

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JacquesHammer · 10/01/2020 12:50

But we have been told at several different time and by at least 2 different "professionals" that we should not use pull ups. They were very clear about this

It’s so frustrating but we were told just the opposite. We were told that worrying about going to bed and wetting the bed can in it’s turn cause the child to wet - a link between anxiety and bladder function. We were told to remove that possibility by allowing pull ups (if DD wanted).

Clymene · 10/01/2020 12:52

We were never told that. Personally I think it's crap - your child produces the hormone or not. I can understand the philosophy once they're growing out of it (so after the desmopression, my DS would wake up if he felt like he was starting to do a wee which he hadn't before). But if your son is sleeping right through, then that isn't happening. And it wasn't happening for mine pre meds.

I reality feel for you and hope the meds work.

UnaOfStormhold · 10/01/2020 12:52

Desmopressin doesn't help with daytime I'm afraid - basically it suppresses urine production overnight (mimicking the hormone vasopressin that we all need to be dry at night). There are things that can be done for daytime wetting, though generally the first step is to address constipation/impaction which is often the root of urinary problems in the daytime (and sometimes night). Try the ERIC website - lots of useful advice there.

Original poster
payingfortime · 10/01/2020 12:53

AGnu - I'm not 100% sure but I think its for night time only. My DS went through a period last year where he was wetting in the day. It was pretty horrendous. Really smelly urine and at times an almost constant stream of wee. Got him tested for infection - nothing. In the end it was caused by constipation. Once we got DS to drink much more fluid in the day, and upped his fiber massively, the day time wetting stopped. Could this be the cause of your DC day time wetting?

OP posts:
Original poster
payingfortime · 10/01/2020 12:58

So frustrating regarding the pull up situation.

I went against my instinct by taking them away, but of course was compelled to listen to the professionals. So many fucking months wasted, dreading going into his room every morning because I'd be faced with wet sheets and bedding and clothes. Even though I've been using the special sheets its like the smell has permeated and is just always there, no matter how many anti bacterial sprays and washes I use.

Oh and there was that time I pulled out the bed and found where he'd been stuffing all his wet pants for weeks instead of putting them straight in the wash!! The stench is still in my nostrils, and that was months ago!

OP posts:
Damntheman · 10/01/2020 12:58

I'd put him back in the bed time pants until it kicks in. He's wetting the bed every night and it's clearly not deliberate if he's asleep when he does it. Make everyone less miserable until the meds work :) The smell is horrendous isn't it! My 6 year old wets every night too but he's got pull up night nappies.

GrumpySwivelHead · 10/01/2020 13:00

I would definitely try the alarm ahead of medication if you can. If the alarm goes off you need to wake up and wake him up to go to the toilet. It’s a total pain to have broken sleep but it does help the connection build in the brain to wake up and often can make a difference in a couple of days. Have you looked at the ERIC website - it’s a great place more more information.

We tried dessies to the max level but it made no difference (neither did oxybutanin.) my DD (13) still has challenges and is waiting for a cystoscopy to see what’s going on :(

Original poster
payingfortime · 10/01/2020 13:03

GrumpySwivelHead - I know this sounds awful but I just don't think I have it in me to try the alarm. I am TIRED of all this. I just want to go back to pull ups and then try the Desmopressin at this point. I am sorry to hear you are still having issues at 13, I really hope it gets sorted soon Flowers

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