Extreme bedwetting

[elliejjtiny]

Ds is 10. He's been on the maximum dose desmopressin since May last year which has helped but he is still wetting his pull up most nights and leaking through his pull up about once a fortnight. He's seen the specialist continence nurse who checked he wasn't constipated, his bladder volume is fine and we are doing all the right things like no drinks 2 hours before bed, medicine 1 hour before bed, but drinks from a cup rather than constant willing from a water bottle etc.

The nurse is at a loss so she is referring him to the specialist continence team at the hospital, although they rejected his referral 6 months ago when the paediatrician referred him because he didn't meet the criteria, which is why he ended up seeing the continence nurse.

He also tip toe walks and had an MRI scan in June to rule out a tethered spinal cord so that could be causing his bed wetting. He also has ehlers danlos syndrome which can cause some medication to be less effective.

I know I'm being pathetic but he has so many different medical conditions which are relatively minor on their own but when you put them all together it's just so overwhelming. He is doing brilliantly with it all and takes it in his stride, it's me who gets overwhelmed with all the appointments and referrals. Everything seems to take so long as well. We've got an appointment with the orthopaedic consultant next week that we've waited 8 months for and we've been waiting more than 6 months for a hearing test. My dh family is quite dismissive of ds problems and they all tell me that I'm over reacting and I should be used to it by now. My family are more sympathetic but they live far away so we don't see them very often.

What type of pull up does he uses? There is also a plastic pants you can get to go over his pull up.
it sounds so hard but you sound like you are doing an incredible job. Have they possibly considered a condom cathater type device to catch it instead of pull ups? X

Thank you. He normally wears the huggies night time ones with the footballs on the front. I didn't know you could get plastic pants to go over them in his size. I've tried padding out the pull up on the inside with cloth nappy boosters or sanitary pads but they didn't make a difference.

You could also try the alarm systems and contact ERIC. Can be helpful.

You are definitely not alone, and we also had this long term (foster children with complex needs). We found referrals to specialist clinics only dealt with the bladder/bowel related aspects - when this was only a small part of the overall problem – and usually not the most important priority. Yes, we tried alarms and desmopressin – but without any major improvements. We took the view that we would do anything we could to help - but if the clinic couldn’t find/suggest anything new, the best way was to take a pragmatic view and manage the symptoms! Their other medicine also meant that they had little appetite all day – and only wanted to eat and drink once they were back from school. This made limiting evening drinks tricky.

Practical steps – pull-ups just didn’t cope and we went to specialist health/incontinence suppliers and bought ‘all-in-ones’ (nappies) in junior and then larger sizes. They also do plastic pants in child, youth and adult sizes as well as popper vests etc. (Especially useful to stop nappies/pads being removed). Even then we still had leaks – nothing is 100% - we used reusable bed pads and really good fully fitted PUL (polyurethane laminate) mattress covers (bit like a hospital bed) bought online as well. (You might be lucky and get nappies supplied via NHS but don’t hold your breath if its only a night-time problem. They usually don’t want to know). Eventually also had waterproof 4.5 tog duvets (don’t go for really cheap papery ones) and bought ‘nautilus’ fabric covered mattresses – made the clean-up a lot easier. We also had soft vinyl flooring and funky washable rugs in their bedrooms.

Try this link For plastic pants
I have find the older they are the less leak proof they are

Thank you, I will definitely get some plastic pants. We already have a waterproof pillow and duvet which has been brilliant. Before then I was washing duvets and pillows most days, not just the covers. The continence nurse said that an alarm probably wouldn't help as he is a very heavy sleeper and shares his bedroom with his brother who has adhd and doesn't sleep through the night. She said that he would probably sleep through the alarm and it would wake up his brother.

Little update, I looked at the Eric website which said somewhere that a specialist could prescribe an alternative to desmopressin that's stronger. I thought that would be great and what I've been asking for since last year. This morning I got a phone call from the continence nurse saying ds referral to the specialist continence team at the hospital has been rejected again because he doesn't qualify. She said that the only option left is the alarm but she still doesn't recommend that. I asked about the alternative medication and she said I need to talk to the gp about that. But it was the gp who said there wasn't anything stronger than the max dose of desmopressin over a year ago. So now I don't know what to do. I really want to take the dc on a cheap holiday next year but I can't see how that would work if he is still leaking.

Hi Ellie, I am interested in the stronger medication you mention. My daughter has been on double dose desmopressin for the past year but after 4months of 6/7 days dry she suddenly regressed to 1/7-10 days dry! Pulling my hair out. Followed all the drinking rules, no luck, she has been waking middle of the night for 3weeks to change clothes, exchange the wetvedmat for dry one then going back to sleep, we're now considering returning to drynites pants for some quality sleep for her and a break from washing for us but know its not a good idea...what can we try next? She's also a deep sleeper so when discussing with enuresis team realised alarms wouldn't work. I vary between nagging mummy to 'I give up drink what you like' approaches...

Why did she not recommend an alarm? Max demepressin on its own didn't work for my boy, in combination with the alarm it's been a miracle

He's even been off the alarm for a few weeks, and only had one accident this month! (Still on max demepressin)

@Tiredmummy2019 we spoke to the gp, a different one this time, who said that he could have 400 micrograms of desmopressin (he was on 240) so he's been on that for a month and that hasn't helped. According to the Eric website there are other medications but they have to be prescribed by the specialists who won't see ds because he doesn't meet the criteria.

@Exactfare the paediatrician said she wouldn't recommend the alarm as he is a heavy sleeper and he shares a room with his brothers who are light sleepers. To be honest his 2 brothers who he shares with both have sleep problems as it is so I'm dreading the idea of an alarm waking them up as well. One has autism and one has autism and adhd. At first the incontinence nurse agreed with that but now she is pushing the alarm as it's the only thing we haven't tried.

I never thought an alarm would work for my son. And I dreaded doing it. He also shared a room with his brother and was a heavy deep sleeper. In the end I camped in the spare room with him for a few weeks. I slept on a few duvets on the floor. The first couple of weeks were a nightmare. I had spare clothes and pants and bed mats in situ. So I tried to make it as easy as possible for myself. I was waking up to the alarm and he wasn't. One night I woke up and he wasn't in his bed, I panicked and went out of the room. He was stood up at the toilet. After that he cracked it. It's as if something clicked in his brain. I would definitely try it. It wasn't easy but so worth it. My son was about 9 when we did it.

@elliejjtiny my son's a very heavy sleeper, the first alarm we tried was a mat that had no effect

The eurensis nurse then gave us an alarm that clipped to his pants (worn with a pull up on top! So minimally effort in the night) and it woke him more with the vibration then noise

It was like a miracle cure (used with the tablets), I really think you need to at least try - it was our last ditch before urology referral as my son had never had a single dry night

Just to add, the alarm my daughter had had a vibration only setting which easily woke her up but wouldn't wake anyone else - could be an option.

Might not be relevant but I find it really interesting. A child I know was a prolific bedwetter, had the alarm pants etc and it was only when he had his tonsils out following bout after bout of tonsilitis that it stopped. Apparently he had been suffering a sort of sleep apnoea from constantly enlarged tonsils so was never able to get to the depth of sleep required. It was like an actual miracle!

Hi guys, we have discussed it but there is no spare room andeach room hasn't enough floor space really but I like the vibration idea...I am trying to get back with enuresis team as they discharged us in summer...

Interesting about tonsilitus as she did have that lots of times last year bit hasn't had it since April time
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That's really interesting about the tonsils. Ds has only ever had tonsilitus once but he does have a cleft palate, glue ear and he has always snored really loud so sleep apnea is a definite possibility.