9 year old bedwetting

[Cudz]

My 9 year old ds is under a paedetrician for primary enuresis

Just got a diagnosis today if same for ds 13..
Actually sat here fuming at the GP.. Got back just before 5.30 and rushed round to drop off the letter for a prescription that GP needs to issue.. I asked if it would be ready for Thursday as we go away then. Not a chance apparently.. GP herself was there and piped up that they get done when they get round to them. Ds has waited 10 months for this appointment since the initial Dr's appointment..
How is your dc op?

My 9 year old ds is under a paediatrician for primary enuresis (basically he's never had a dry night since he was born - this is due to a hormone that he needs to surpress the night wetting not having kicked in yet). He's been on desmopressin tablets at night for over a year now (started off on 120 for 3 months and been on the maximum 240 dose ever since). Despite all of this he was still wet every night. We had been advised by the paediatrician to not use a bedwetting alarm, however recently we thought we would give it a try as nothing to lose so two weeks ago we bought one off amazon - it basically clips to his pants and beeps at the first sign of any moisture. The first week it went off once every night at a different time each night (anything between 11pm and 4am) and he would then get up for a wee then back to bed. However this week we are currently on 6 CONSECUTIVE DRY NIGHTS! We haven't had one dry night before let alone 6 in a row. The alarm isn't beeping at all during the night so I'm now thinking has the alarm somehow triggered the hormone that he was missing or is it all just coincidence? Obviously I'm not going to get too carried away as I'm very aware the bedwetting may return but for now this is just amazing for him. He's still taking his tablet every night. We aren't due to see the paediatrician again for months (covid delays) so do I just continue him on the tablets or do I maybe try a night without them? Would love to hear from anyone with any experience of this.

@Pumpkinpatchlookinggood what a nightmare. I know once you have that diagnosis you just want to get them started on the meds don't you. Have they prescribed the 120 or 240 dosage? Is your dc wet every night? Bless them it's so hard for the kids I can tell how much it was knocking my dc's confidence x

120. He is asking to sleep at his mate's and keep having to say no. He is currently awaiting ASD assessment which Dr said is likely connected..

Yes I completely understand the sleepover thing as we've been through similar having to say no. He also has a residential school trip approaching and I know that's been a big worry for him as he's so scared of his friends finding out. Really hope the tablets work for you! X

Alarm worked amazingly well for my almost 7yr old. She has been dry now about 5 months, has had an accident here and there but nothing like the full wet nappies she had before using it. I think the hormone is a thing but it’s not the whole picture, there is a behavioural/habit element where the body is just so trained to let go in the night, and the alarm teaches the brain to wake. My Dd still often needs to get up in night to pee, especially if not fluid restricting near bed, so I suspect she doesn’t have as much of the hormone as other kids, but she does wake so it’s a fantastic result. Hope things continue like this for your son, bet he is delighted!

What alarm did you use? I'm planning on doing an econsult for my son tomorrow about bedwetting as he's never had a dry night.

In what way is ASD connected with it? I am curious. I have an ADS 11 yo who is also struggling with nocturnal enuresis.

@Tralala33 how old is your ds? Gp's seem to be pretty rubbish about this condition to be honest and just refer rather than prescribe anything themselves. I think all the bedwetting alarms pretty much work in the same way but we used this one (mostly because it was one of the cheapest!): www.amazon.co.uk/DryEasy-Bedwetting-Control-Selectable-Vibration/dp/B00LX0OV2E/ref=asc_df_B00LX0OV2E/?tag=googshopuk-21&linkCode=df0&hvadid=310808401342&hvpos=&hvnetw=g&hvrand=1060815195660551584&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9046394&hvtargid=pla-564674688901&psc=1

I mentioned ds is on the pathway to assessment and was it connected and he said yes. He named the part of the brain that isn't developed to control the bladder. Associated with asd he said.

The alarm trains the brain to wake up when the bladder is full, it’s doubtful it’s triggered vasopressin release - although if he is having dry nights without getting up to use the toilet that would indicate he is releasing the hormone, if he wasn’t he would be wet every night.

@Lockdownlard it's interesting isn't it. I just can't understand how he hasn't had a dry night in 9 years despite being on desmopressin for the last year, yet after jist one week using the alarm he's had 6 completely dry nights. Something has definately changed but whether that's hormonal or behavioural or just entire coincidence who knows. I'm just hopeful he can carry on this way as I can see how proud he is to wake up every day and tell me he's dry

Another dry night!!! Woop!!!

Thanks Cudz. He's 7.5. I've just submitted the econsult to the surgery and asked to be referred straight on to the Children's Bowel and Bladder Care team. I think I'll get the alarm in the meantime as I'm assuming if I get the referral it will take ages.

Great news on another dry night!

Good luck @Tralala33 To be honest I'm not sure why we were discouraged from getting the alarm but I am so glad we have done it now as something just seems to have clicked since we started using it so it's definately worth a go. My ds has woken up so happy again it must be such a relief for him and the whole bedwetting issue was probably worrying him way more than he had actually shown x

Another dry night last night so this can't be coincidence as he's now on 8 consecutive dry nights! He'd never had even 1 dry night before this

Hi. My boy has wet the bed up to the age of 8. We have been through the GP’s, tried alarms and eventually ended up on desmomelt medication when he turned 6. We started on the standard dose but then had to be doubled. This helped slightly but was still wet about 5 days a week. After approx one year I got frustrated and decided to stop the medication and took to the internet to find other ways. I came across a company called therapee. I wouldn’t normally buy off the internet but I needed to find another way. And although expensive to buy the alarm with mat and the monthly package, we had regular reviews with new exercises and a progress chart, my boy is now completely dry. It took 5 months which the first couple of months I did question if it was going to work and it was disturbing my sleep most nights because of the alarm going off. But now my boy is 8 and a half and now completely dry for the past 2 month. I think the version of the alarm with a mat worked a lot better than the standard clip on alarms we have tried before as he seemed to roll over in his sleep and detach it from his pants so it wasn’t reliable in waking him up wet. The mat caught any moisture so did go off a couple of times when he was sweating in bed but otherwise has been the best thing I’ve bought.