Anyone's child take Desmomelt?

[Riddlediddle]

Hello
My 8 year old ds suffers with bedwetting. He's never had a dry night in his whole life despite being dry in the day from a very early age. We finally got to see a peadeatrician today who said it was a clear case of primary bedwetting and has prescribed Desmomelt tablets. I'm happy with the plan in place but I just want to go into it with my eyes open and would love to hear experiences from others whose dc have used/are using it.
Thanks

Anyone?

Mine is 9 and has taken Desmopressin for about 6 months. Like your child, he’d never had a dry night.
Much, much better with the medication. He still wets some nights - usually when there’s a change in routine, holiday, late night, excitement, parties.
He seems a lot more confident generally. Despite us downplaying it and not making a fuss, it must be horrible waking up wet every morning.
Good luck. We had to double the dose after the first month or so - stoped working.
Missed a few nights (ran out once). Instant return to full wetting.

They worked brilliantly for ds he took them for two years until he was out on an overnight tube feed so had to stop.

That sounds encouraging. Night one last night and no difference he was still wet but I suppose on night one I shouldn't have expected any change.
I just feel for him as he really wants to do sleepovers with his friends but he is so scared to go because he doesn't want anyone to know he wets the bed

Sorry, I haven't any experience of this medication @Riddlediddle.

However, my youngest DD was wet every night until the age of 8. The turning point for her was using a Malem alarm. She wore it clipped to her knickers, with a pull up over the top of them. Within a month she was completely dry at night with only a handful of accidents.

Is this something that has been considered for your son at all?

I really do feel for you - it is upsetting for the child and parents, and it does feel like it will never end. ☹️

In the run up to school camp we threw everything at bedwetting. Some improvement on double dose desmomelt, then the bedwetting alarm seemed to really crack it. He was in P7, year 6 in English money.

Alarm was much worse for us as it terrified him!
We still send pull ups on sleepovers. I have discretely mentioned it to the parents and every time have been met with them saying that their child has the same problem! It’s much more common than we realise.

My DD took desmomelts, they work, but don’t solve the underlying problem. What you need is a Malem bedwetting alarm. Totally resolved the issue in a few days by working on the bodies unconscious response to the need to pee. We were lent one by the paediatric dept but think you can buy on Amazon.

I will consider alarms again then. I had done some research and written them off as it suggested if the child is a bad sleeper (which my ds is) then it could result in other sleep-related problems of them being awake for long periods of time during the night and then very tired children at school. It's such a minefield isn't it and because it isn't openly spoken about then people have to try and navigate their own way through it

Oh just looked and the Malem is £83 on Amazon. Bit more than we can afford unfortunately

😂 @parrotonmyshoulder -

My DD informed me she didn't like the alarm. When I asked her why, she said "it keeps waking me up!"

The approaches work on different things really. It is my understanding that the medication helps when the child’s body doesn’t yet produce the hormones that reduce night time production of urine. That’s why they shouldn’t drink after the tablets. The alarm works to wake them up to use the loo, but they shouldn’t really need to urinate during the night if their hormones are working effectively.
My poor DS was terrified of going to bed when we were trying the alarm as the sound woke him up from deep sleep. A less anxious child might be fine with it - they are all so different.

@Riddlediddle - do you have support from your school nurse and / or enuresis clinic? Their help was invaluable, and they also provided an alarm foc for DD to use for as long as needed.

So many other things were covered by them; bladder capacity, frequency of toilet trips, types of drinks, how much etc to name a few. Has this all been looked at for your son too?

My DD slept through the alarm that woke the rest of the house up. Completely oblivious!

Tried desmomelts, which barely worked and maybe gave her one or two dry nights a week.

So we just waited for time to resolve the issue, which it finally did, but not until she was 13!

@parrotonmyshoulder - yes, the first time the alarm went off it really made my DD wake up with a start.in fact, it woke the entire household up!

@chickenfeathers no not at all. We saw the GP about 2 years ago to mention it and they made a referral to a peadeatrician. Yesterday was our first appointment with the peadeatrician and they just ran through some questions, said it was a clear case of primary bedwetting and prescribed the desmomelts. No mention of alarms or school nurses (don't think we even have one?)

My eldest was prescribed desmopressin when he was 9 or so. He took it for a month (had to double the initial dose) but unfortunately it didn't work for him. We had a malem small alarm that clipped to his pyjamas but he would sleep through this. We were fortunate enough to be lent one of the malem alarms that go under a sheet on the bed by the local continence service. It took about a month and the first few nights he didn't really get to sleep because he was worried about the alarm going off (it is extremely loud - still doesn't wake the husband though!). ERIC the continence charity is also brilliant at advice. He was reliably dry after this and has been ever since - he's 14 now. Just about to go through the same with his 10 year old brother.

[quote Riddlediddle]@chickenfeathers no not at all. We saw the GP about 2 years ago to mention it and they made a referral to a peadeatrician. Yesterday was our first appointment with the peadeatrician and they just ran through some questions, said it was a clear case of primary bedwetting and prescribed the desmomelts. No mention of alarms or school nurses (don't think we even have one?)[/quote]
This does seem odd. My dd was referred to a paediatrician who oversaw everything in general, but he also involved the school nurse and enuresis clinic , so we all worked together. The paediatrician said medication would be the last thing for us to try. DD had a bladder scan to make sure there was no physical medical reason for her bedwetting. It might be worth looking at the following, which also helped DD:

Increasing fluid intake during the day, and when the toilet is needed, try and hold it for for maybe a minute before going.

No drinks at all in the two hours before bed. If he is really thirsty, a few sips of water will be okay.

Cut out all dark fruit drinks, such as Ribena, Summer Fruits, Vimto, Apple & Blackcurrant, and all fizzy pop and hot chocolate - all of these are diuretics and will increase the need to go to the toilet.

Make sure your DS goes to the toilet twice before going to bed.

Try a pair of underpants then pull-ups over the top. This will enable your DS to feel the wetness without waking up to a wet bed. If you do try an alarm, attach it to his underpants.

When your DS goes back to school, make sure his teacher is aware of this so they can encourage him to drink and use the toilet during the school day. It might also be worth asking school if they have a contact for the school nursing team who would be able to help you.

I hope some of this may be of help to you. At times it felt so long winded, but as the doctor told me, it is a process of elimination.

We just saw a GP who asked what I’d tried, listened and then prescribed the meds. I had been about a year before and told to read ERIc advice and come back if no better in a year. No chance of a paediatrician here, and no school nurse involvement unless day time wetting/ soiling.

The paediatrician told us he would have another appointment in a couple of months and if things haven't changed then he would double my DS's dose. No talk of any other strategies or options it was all meds based

I can’t believe you’re actually getting paediatric appointments and follow ups! It’s great that they’re taking it so seriously, I’m just shocked that children in my area aren’t getting paediatric appointments for anything! Shows how different the situation is in different areas, doesn’t it?

Dd didn't see a paediatrician but was referred to the enuresis clinic who prescribed it and had her on star charts and lots of rules.

No drinks after 7.
No dark drinks, milk or acidic drinks after 6pm.

But tricky when she was a teen going to bed at 10 and not allowed to drink after 7.

Didn't help my son but a bed wetting alarm did.

He has been wet both nights so far but still early days. I know a lot of people are saying alarms worked for their dc but if the missing hormone is the issue as per my ds's case then surely an alarm wouldn't make any difference?

I disagree re the hormone - I thought the same, my oldest son got to 10 and I was waiting for the hormone to kick in, it didn't. Yep weeks of the alarm and he was dry.

Son number 2 wey the bed until o got the alarm around 8 and within two weeks he was dry.

It's about training the brain and the bladder to connect W go Ivy the alarm helps to do.

The tablets may help but they didnt for us.