Hi! I'm new here. I've joined this forum as I am really hoping to find either someone who has a similar story or even to get some advise for what I can do to help my son. Sorry if this is long winded but it 6 years of story.
He's 12 and half yrs and never been dry at night. No day time wetting since a toddler (can't remember exactly when but it wasn't late), and he doesn't seem to have poo problems. No other medical problems other than Asthma.
He's been under the local continence nurses for 6 years but he is still no better now after all this time. We've tried everything out there - lifting & waking (he's too old to be lifted now), alarm clocks, bed and pant alarms, nappy type pants, we let him just wet to see if he wakes up himself, then we've tried all the medication available - Desmopressin, Oxybutin and Toltrodene (excuse the spelling). Nothing worked. AT ALL!
We were finally referred to the local hospital continence service recently, but the consultant refused to see him as he didn't deal in paediatrics, so we were seen by paediatric outpatients instead. Dr wasn't a specialist in this area so had nothing to say other than the usual I have heard for the last 6 years - "he should grow out of it". Needless to say, both me and son were pretty disappointed and just rolled our eyes at Dr! LOL! He's been given Desmoressin tablets 200mg again, but as you can guess - it's not working. We can up the dosage to 400mg in couple of weeks but I won't hold my breath.
He hasn't had many tests done - 2 urine tests and a ultra-sound on his bladder to check if he was fully emptying when going to urinate. All tests came back ok. No further tests in the last 4 years though.
I'm now at the end of the line for his treatment and don't know where to turn for help. We (son and I) are completely fed up. Son has no faith in the medical community because they just keep telling him this is normal, but they can't help him. I am fed up of washing bed sheets 1-2 times a day (the cost for washing liquid, electric and water is ridiculous), and winter is approaching so the opportunity to dry the sheets quickly is fading (I have 3 sets btw) - I work full time too so you can imagine!
So where do we go from here? What can we do? If this is such a common problem, why isn't there further help? I've researched the Internet and haven't found anything - but surely this can't be right can it? I mean, we don't even know what is the root of the problem, we just keep being told he'll grow out of it. Yeah - he's 12 and he is wet EVERY NIGHT. Not growing out of it then...
Can anyone help or have a similar story?
Kath
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kath8181
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I don't have any answers I'm afraid, only to say this could have been written by me, except I have an 11 year old girl. I understand how frustrating, tiring and worrying it all is. You think they will never get dry. Like you, we have tried all the mess, alarms and clinics going etc. I wish I had some advice to give you. My only tiny bit of advice if you don't already do it is to layer up the incontinency sheets in the bed so that when he wets the bed you just take the sheet and incontinenty sheet off and there is another one layered up underneath already. Just makes nighttimes a tiny bit easier. x
So sorry to hear about your sons struggles. My nearly 10 year old daughter wets, but has responded well to oxy & desmo. But as soon as we try to wean her off, she starts wetting again.
I take it you have cut out all fizzy drinks & black currant etc? The trick for my daughter is always having 2 wee's before bed - one before shower & another just before she goes to sleep. If she misses the 2nd, she wets.
I am hearing lots of good things about a new mat alarm system called Therapee (its on Amazon) its expensive, but everyone seems to be saying it works!
There is very little help out there, we have just been told we are no longer to go to our clinic & have to go back under our GP - probably due to funding. Not helpful.
Unless your child is going through this, it is very hard to understand the amount of stress it causes to the family.
Tell your boy he will get through this - up the doseage of his medicine, as that is what we did and it did work.
I don't really have much to add other than... your not alone!
Has your sons bowel been checked. Part of my sons wetting issues were caused by his bowel? (Just an idea).
My son used to wet every night but only wet the bed once last week (only a sheet washing mum will hear the pride in that statement)
If I had a pound for every time someone told me that my son will grow out of it, I could pay someone else to wash the bedding....
I have also found that having dinner earlier (I know that life doesn't always allow this) and giving him his last drink of the day at mealtime helped. I guess you have probably tried this kind of thing already, looking at your post.
I'm sorry to hear you're both having having such a rough time it breaks my heart hearing everyone on here with such similar issues and we never really get the help our families deserve it's unfair and especially when he's at such a delicate age. Two things came to mind. Firstly my son has bowl issues and we have been given disability money to help with all the washing of clothes and bed linen and for the extra things like extra sheets and extra underwear, this has helped a lot. We don't have any other benefits so I was surprised but very glad to receive it. Second my son although when he was much younger than yours wasn't emptying his bladder properly due to his bowl condition but he didn't really give himself time to finish either. Has your son mentioned any discomfort or redness as ours needed to have a circumcision late on.
Layer up the bed as someone has already mentioned with the removable stick on mats inbetween the sheets.
Have a look at the Eric website there's great info on there and there used to be a place where young people can look and see they're not alone in this too. You're not alone either so keep in touch. Best wishes to you both.
I can feel your pain! As a child I was wetting my bed for a long time myself, and my child has the same problem. The most successful way for us was following Alicia Eaton's "Stop bedwetting in 7 days" book. It doesn't stop in 7 days, but somehow it helped to get much better. We are celebrating every little success now, and there are more than one is aware of. I also needed to stop myself from beeing frustrated about it, as it is even more frustrating for the child than for me. I myself grew out of it, my parents also opted for the 'mental' opproach, which included my nightly phrase 'I want my bed to stay dry'. I also practiced my night time walk every evening in the dark, to make sure I would find the toilet at night (and wake up properly).
It would be even better if we could find somone who is working with the same approach as Alicia Eaton does, as it is harder to follow all the steps as a unexperienced parent. But we both had fun going through the book and doing all the activities. We did it during the summer holidays with lot's of time every day. We have worked through the book twice, just to remind ourselfs, as some of the concepts are hard to understand.
I am in a nearly identical situation... My 12 year old son has never been dry at night (at least not for long).
He also leaked in the day till fairly late.
He doesn't wake when he wets so simply discovers he is drenched from neck to toes in the morning and has to peel out of his pyjamas (so awful, but we have tried lifting, alarms etc in the past). We also wash bedding constantly (I don't even strip the cover from the duvet now to wash it.)
He is currently taking Desmopressin nightly as we are awaiting Paediatric consultant appointment and the GP felt they will want to know that he has tried 'long term' Desmopressin (not just using for school trips and sleepovers, as we had done in the past) but if he misses a night of the Desmopressin the wetting happens just as before... Not even less wee! (Tbh, I can't really understand why Desmopressin would benefit in the longer term, after the course finishes, based on how it works.)
I find myself lecturing him about fluid intake (not too late, plenty through the day and sticking to water, etc) but I'm not even sure there is any correlation between what he drinks and whether he wets.... Pre-Desmopressin, he could drink only water and wet, or be allowed fizzy for a special occasion and be dry!)
I am also a Physiotherapist and specialise in Woman's Health, so I know about some continence issues. I would love to to try acupuncture for my son (which I also do) but he is not keen on the needles at all.
He does have very tight hamstrings and calfs (part of the "Bladder Meridian" in Chinese Acupuncture)... Does your son have tight hams/calfs (ie could he touch his toes easily, in standing?)
I do feel reassured that we're not the only ones going through this, so thank you for posting.
Hope to hear from you and please keep in touch about any success stories.
Thanks for your message! I can actually give you an update on my son, as some time has passed since my first message and I have good news , and maybe something for you to try.
I took my son to my Chiropractor in January 2018 after doing some research. Don't get me wrong, I was under no illusions that any treatment was going to work, but I felt I had come to the end of all roads, and this was the only thing left to try. The Chiropractor did an initial assessment, confessed he'd not treated nocturnal bedwetting before but said he would talk to some colleagues and see what he could do to help. True to his word, he contacted some experts in different chiropractic fields plus some dr's he knew, and contacted me to say he wanted us to go and see him for some treatment.
My son had around 6-10 session, once a week at the start then more spread out over time, where the Chiropractor did some re-alignments and adjustments. I think he concentrated on spinal alignment, plus hip and hamstrings. He also gave him some core strengthening exercises to practise at home (but I don't think son did these to be honest!). In answer to your question, my son is very inflexible/stiff and cannot touch his toes etc, so I think there could be something in that!
After the 1st session, my son was dry 2-3 nights a week - so a massive and great result immediately! slowly but surely, the dry nights increased, until he suddenly stopped wetting about 4 months ago (so probably about 8 session with the chiropractor).
Don't get me wrong, I'm not saying that this is the cure, and it may not work for everyone, but we saw an instant result after our sessions, and he'd been wet EVERY SINGLE NIGHT of his life until that point, after trying all the pills and spray mediations from the hospital and the clinic. Yes, I had to bare the expense of the treatment (£30 per session) but in comparison to the cost of washing 2 loads of bedding a day (electric, washing liquid and fabric conditioner and trying to dry the bedding in winter) I am now probably going to save that money.
My theory on the sessions is that the message from bladder to brain were not getting through, and if these messages travelling up the spinal cord are being stopped in some way due to mis-alignment, then a readjustment of the spine is plausible.
My son is now 13y 7mnths and completely dry - not one accident for months even after drinking fizzy pop late at night, and all his plastic sheets have been removed from his bedding.
Good luck to you and your child, and I hope you find the solution soon
Hey.... This is very interesting... I've just private measaged you as we are in a similar position and any further information would be amazingly helpful!
Hi, just want to say thank you so much for posting this! I’ve been looking for info on it as I’ve read somewhere it can be beneficial, but wanted to hear it from a ‘real person’😉 you’ve just given me a string of hope and I’m gonna try to find a chiropractor that will work with us! Fingers crossed!
This is a great thread for giving hope! I have reached the end of hope with meds...we have tried oxybutinin and desmopressin separately and together and still no prolonged periods of dry nights.
I was considering looking at accupuncture or a chiropractor. We used a chiropractor when my son was a baby for reflux and it helped! I agree it would be worth the cost versus all the sheets, washing & drying...plus the exhaustion really has an impact on your life, I don't think people appreciate how much.
Hi all, just wondering if anyone else had had any success going down the chiropractor route? I’ve just spoken to one near me, who said the same - that she’s not worked with it before but will speak to colleagues and assess my son and see what we all think after that. A glimmer of hope for our poor babies.
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