Private treatment for late bed wetting (age 9)??

[FusionChefGeoff]

We've been through the school nurse and specialist incontinence team who agree he's got a 'referral worthy' problem. We've tried all the NPI eg drinking more in the day, removing all irritants, stopping drinks before bed, double voiding, charting etc. He tried an alarm with some success about a year ago but he hated it and is now refusing to try it again.

He also has 'patches' of daytime wetting when he says he didn't realise he needed to go.

we're now on a seemingly endless waiting list for more serious help which I'm hoping will
Involve some kind of bladder scans / monitoring and some medication.

He's getting more and more down about it even though we're trying really really hard to play it down - every now and then he just sobs and it's heartbreaking.

Has anyone gone private?? Google isn't very helpful.

So this doesn't really answer your question about private but my friends kid had this and it was because a certain hormone which stops you seeing in your sleep hadn't kicked in properly. So she takes medication daily for it and it's not a problem any more. So it might be that it's taking a long time but once they get there it will be a quick fix xx

I spoke to ERIC

They are a charity etc but they were fab. Lots of ideas to try and they helpline were excellent not just about products but understanding the child.

My dd simply doesn't have the feeling of needing to go (she also doesn't feel hunger, medical mystery) meds helped but mostly she had to train herself. We used nhs though

Definitely speak to ERIC. They are very helpful. I have a 9 year old with similar issues, he was in the system but got 'lost' because of COVID. Awaiting him back in the system as he was on a drug to relax his bladder muscles , the paediatrician wanted him on a different drug (demopressin I think) but only as he reached 8. So that's the next step I think, he is still not dry at night and wears the teen size pull ups. We've tried everything. It's tough!

Has your Gp not prescribed desmomelt? (Desmopressin) - two of mine were night wetters until about 12/13. Had tests etc via enuresis clinic and all fine was just a matter of time.

We did everything- including desmopressin and many meetings with specialist continence nurse - with ds1. Nothing worked until he decided that he wanted to be dry at night for when he went on year 6 residential. We started using the alarm and whilst it took quite a while and caused a lot of sleep disruption for me and DH eventually it worked. I think ds had to be motivated though.

Where are you based? After giving up on our local continence service after three years of no progress we paid to see Prof Anne Wright (Chair of ERIC) privately and she then wrote to our GP asking them to refer to her at the Evelina on the NHS and he was seen for follow up in under 3 months. The issue isn't resolved yet (day and night time wetting, 11 yr old) but we're making progress and Prof Wright is wonderful.

Oh no, that sounds difficult.

Eric are definitely worth a try, and we had success using a Rodger bedwetting alarm with separate boxer shorts. I know you said you tried one, but this alarm isn't too weird, and it really worked for us.

@tpmumtobe Midlands based - where's Prof Wright and would Bupa cover it??

@UnfinishedBunting that alarm looks great - it was the wires and armband that he hates.

Doesn't solve our daytime leaks though which is why I really want to be seen by someone who can look into physical causes / medication.

@Noeuf out GP just referred us into the school nurses / continence clinic so not sure the 'pathway' they use in our trust allows the GPS to prescribe but I suppose it's worth a try if we can get an appointment.

I'll have a chat with ERIC but I'm not really sure what they will suggest that's any different to the continence team we were under.

FusionChefGeoff, it's a great alarm, we bought ours (then sold it) on eBay.

We had a bit of an issue with daytime wetting too - in our case, this was being too into doing something and putting off going, so we talked about this a lot.

Good luck - I know how stressful these things can be for everyone. And when you're in the middle of it, it's hard to imagine things getting better.

@UnfinishedBunting oh great I was worried about tax / shipping / cost I'll check out eBay.

I've put in an online enquiry for Prof Wright. I guess if she can get GP to refer then we may be able to claim further treatment etc under BUPA will call them.

@FusionChefGeoff The Evelina is in south London, her private clinic is Great Portland Street. Can't see why BUPA wouldn't cover it.

If you haven't already it's worth keeping a pee diary so you can document the issues in full. There's a template on the ERIC site here: www.eric.org.uk/pdf-bladderbowel-assessment-chart

Oh it’s so stressful, just wanting to offer a story that ended well - they used the meds for ages and then during a break (we did them every so often to check if they could manage) they both stopped wetting. No issues since, hope it works out for you as easily.

@tpmumtobe we did 3 lots of charting when we were first with the continence clinic - was ages ago now though so might do a couple more so we've got more recent info available.