Dancer_Boyd

Snap! My daughter is 8 and we have a similar pattern which is frustrating.

I feel the medicine isn’t working and keep being told to carry on “she’ll grow out of it” or “she can be on the tablets for a long as necessary”

Bu what they won’t answer is how long the tablets take to work - if they ever will!

I have recently requested a blood test to rule out any underlining health problems. If results show a problem then we can move on, if not then at least I know we need to persevere with it .

Have you asked about friendship issues, homework and stress levels?

Cecd in reply to Dancer_Boyd

Thanks for your reply, it is so frustrating. My son was checked out by a urologist, no physical probs so that is good.

Yes gone through the school and friends check but no worries. Times when you’d think he would be stressed he’s dry and other times not!

You’re right it is about perseverance, I just feel so sad for our children that they can’t talk about their condition to others. I hope in the future people can be more open and not embarrassed.

I believe there needs to be more research into why it’s happening, it’s much more complex.

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Dancer_Boyd in reply to Cecd

Totally agree. We have residential trips to consider this year, and what the best thing to do.

We want her to attend as this is important for social skills and development but at the same time don’t want her to be embarrassed or worse bullied for wetting the bed.

Has he never been dry?

Reading through some of the blogs it seems we are not the only ones looking for answers or “cures”

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Cecd in reply to Dancer_Boyd

No he’s never been dry. I used

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Cecd in reply to Dancer_Boyd

No he’s never been dry.

I agree residential trips are important, although at primary they’re not essential and not all children will go. So I would see how she feels, if she really wants to go, my son went in Y6 and wore pull-ups. The school made sure there was a bin in the bathroom where he could put them discreetly and he shared a room with ‘kind sensitive pupils’ . No one knew and the teachers were great.

Although we don’t talk about teaches will have experience of taking children with these probs.

My philosophy is if they want to go, although we worry, it’s important not to hold them back and give them the equipment they need.

Good luck.

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Slice

I have a fair bit for both of you. First off is to make sure that your kids understand that bedwetting is NOT their fault. Stating the obvious? You need to do that with kids. The success rate is (to me) questionable. And mind you I am no kind of medical expert on any of this. While if you Google it, what you'll get is somewhere about 25-65% success or improvement. I did some looking into this some time ago and seem to remember that the collaborative results from all the studies done on the different meds used that the overall success rate was less than 20%. In both cases here, the first thing that comes to mind is something that may be causing the bedwetting. You might want to work with your kids and be detectives. What you're looking for is any kind of pattern that may correlate to the on and off wetting. Are there any issues with bullying? Any changes in diet including food and drink? Any family problems? Parents fighting, abuse in the family including extended family? No one wants to believe that something like this is happening with their kids but just keep an open mind to it. When the kids are wetting, is there any pattern to who is visiting or others that they may have stayed with? I'm not suggesting that this is abuse, but while you don't want to go crazy about it, don't just dismiss it. Trust your instincts and if they tell you that something is amiss, check it out. From what I understand, and this may be more applicable to Cecd's son, because of the major increases in the requirements for passing courses in school, I've read somewhere that there is an increase in stress related bedwetting in the UK. Now onto a little bit about dealing with it. Cecd, What is your son using for protection at night? If he's using diapers, is he putting them on himself? If he's not wearing protection, or if he's not using adequate protection that can be a problem when going somewhere else. Dancer_Boyd, at 8, your daughter is probably too young to manage diapers herself but she has a way to go before needing something more than youth pull ons like Drynites or the like. For both of you, at some point if they are still wetting, they will eventually outgrow the capacity of something like Drynites and will need to use diapers. To help both of them cope better with the situation, they should both be encouraged to be as independent as possible in dealing with this. It makes a huge difference in how they feel about the whole situation especially when they get into the tween/teen years. I've worked with kids (on bedwetting forums) and one of the things that has come up is kids not wanting to wear protection at night because it makes them a baby. What I pointed out to them was that whether or not they wear protection, they are still peeing in their sleep. I suggested that wearing protection could also be seen as being more mature and doing things to deal with the issue and protect the bed and their clothing. And of course, the other thing is that they will (if the protection is adequate) not be waking up in a cold wet bed smelling of urine, and will have a much easier time of cleaning up in the morning. The guidelines I've suggested is that any child who is a bedwetter, will have free choice of whether they wear protection when sleeping in their OWN bed. Anywhere else, whether it be somewhere else in the house (the place where they live), a relative's house, hotel, or when traveling such as when traveling where there is the slightest possibility that they may fall asleep that they MUST wear protection. Two other things to mention. First that kids who are doing well for say a couple of weeks in staying dry, will very likely wet their beds in different surroundings such as a friend's house or other. Second, that it's generally accepted that bedwetting is not considered over until the person has had at least 6 months completely dry at night. Keep loving them and frequent updates with them. When they are doing what is asked of them, remember to recognize their efforts. It goes a long way. Don't wait until they come to you to ask you if they're doing well. Last but not least, something that I forgot to mention above is that when appropriate, they should be managing this themselves (with the exception of having to get their own protection LOL). That means taking care of their bedding and clothing when they do wet the bed, whether it's because they leaked, maxed out their protection, or just didn't wear protection and make sure they understand that this is not punishment. Good luck!

Slice

Another thing to add is to remember that sugar and caffeine are diuretics (they will make your child pee more). I would guess that the 8 y/o is not likely drinking coffee, but remember that coffee, tea, and many of the sodas even many of the "clear" sodas now (unless decaffeinated) contain caffeine and certainly the sodas contain lots of sugar.

Cecd in reply to Slice

Thanks for taking the time to reply and all the info. Yes I had heard that it’s 6 months dry before they are considered ‘cured’. My son has never been dry and so we have looked at all the possible reasons. Sometimes he’s worse when starting back to school after a holiday but then other times, like when he started at secondary school he was dry for 10 nights! Which really didn’t make sense. Exam time doesn’t show a pattern and emotional aspects occasionally do affect but there’s no pattern or rule. I keep daily records and have looked at this in depth. Occasionally I become so frustrated that I have also tried, forgetting about it, not discussing wet nights dry nights, so what. Then I focus on all the other great things happening in his life... after all it is what it is and this helps me too.

He strips his bed and puts it in washing machine (recommended by urologist) and he makes his bed. He wears these fantastic waterproof pyjamas from Sweden when he goes for sleep overs. The waterproof sleeping bag liner was a great idea until he grew so tall he would wee out of it - disaster.

He doesn’t drink fizzy drinks (luckily he has never liked them) nor caffeine based drinks. The only correlation we have found is drinking during the day does seem to affect him, so we encourage lots of fluids.

My original question/confusion is I really cannot understand how he has a substantial amount of times ie 5-6 weeks of dry nights after bed wetting 3/4 times every week and no pattern reason for it stopping or re starting.

Currently he is wetting 4 nights a week.

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Slice

One other thing I can suggest is this, and you may already have him doing it. Any time that he wakes up in the night, with anything from needing to go so bad that he can't make it out of bed, to already having emptied his bladder, have him make sure that he gets up and goes to the bathroom doing everything he would do if it were the middle of the day. Even if his bladder is completely empty. Take the time that he would as if he did have a full bladder and sit on/stand over the toilet for a couple of minutes. Also, it's not surprising that drinking lots of water helps decrease the wetting because plain water is also a diuretic. One other thing to consider is if he has some type of sleep disorder or other problem like obstructive sleep apnea. I read a story some time ago about a young man about 15 years old who massively wet his bed every night. Not even the highest capacity diaper with booster pads would contain everything. His parents took him to get a sleep study and it turned out that he had a very abnormal sleep pattern. This sleep pattern includes 4 stages and each cycle is 90 minutes give or take. One of the stages is deep sleep and it is where you are essentially unconscious as if you got a good knock to the head and were knocked out (unconscious). It turned out that he was going down into deep sleep and staying there all night. This example I'm pretty sure is not likely something that is happening to him. BTW, I don't know if he would be interested, but I have done a fair bit of work with other kids (on forums) and would be glad to talk to him if he wants to post a message here. How is he coping with this? Is it getting him down, or does he still stay fairly upbeat? Thanks for the reply and I hope that I have been able to help.

Cecd in reply to Slice

Thanks very much again for taking the time to reply. Strangely my son has never woken up in the night wet, he will get up and go to the loo and then have a dry night or he always sleeps through until the morning to then find he is wet. I do wonder about the sleep disorder as he is a very heavy sleeper.

Thanks for the offer of chatting to him, I will ask him and let you know.

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halftime in reply to Cecd

Hi cecd. Everything you are saying is very familiar! My son is 15 and essentially very similar in most aspects to your son I think. Although the stop start dry wet thing is mysterious at present, I (same for us) do feel it is a very positive move in the right direction at least.

You mentioned in one of your earlier posts that medication doesn't work. I wondered which med your son had been prescribed. My son has been using Desmopressin melts - you have to break every 3 months for a few weeks off- (120mg generally but Dr has said at his age and body weight could take double if necessary to ensure dry night); as I know you will know if these are what he uses, these work as a synthetic version of the Vasopressin which the body should produce at night to switch off urine production and allow the body to go all night without needing or being woken by urge to pee. Hence, we can' t lay in bed comfortably once we have woken because the pee switch has flicked back on and we have to go. The other drugs commonly used are anti-cholinergics (spelling?sorry) I understand, but are an anti-spasmodic, calming and relaxing bladder, not a hormone replacement. I wondered which one he took and whether it might be worth asking to try the other for a trial. I know the drugs do not cure, but it makes functioning relatively normally possible.

Your description of your son' s sleep pattern is very interesting. My son also sleeps like the dead and I too have raised this and possibility of sleep apnea being a contributory factor (he has and has always had the most huge tonsils) but zero interest from hospital, espcially now he is approaching 16.

The other thing is, we are encouraged to train our enuretic children to wake at night to pee, but.... in the normal course of events...... once kids start producing sufficient levels of Vasopressin at night (around anywhere between age 3 - 6) they cease wetting at night and sleep right through. In fact, a child or adult who was not a night wetter, who was waking every 2 hours throughout the night to pee would be regarded as having a recognisable (different!) problem.

I think you are absolutely right - there really needs to be more research interest in this; in what drives this abnormal response in older children, after developmental factors should have rectified the issue.

I said to a particularly blameful and irritating doctor recently, that I doubted that 'abnormalising 'a childs behaviour in order to create a superficial facsimile of normality was a sustainable or sensible way forward.

That put me on the crazy mother step at the hospital, but I do think there is something in that. My son and I have been presented with many suggested 'causal' factors - the sticks to beat my poor teenager with. Like your son he rarely drink fizzy drinks, only water, he doesn't eat sweets or have a heavily processed or sugary diet, he top- loads water earlier in day and stops drinking and eating 2/ 3 hours before sleeping, is physically active playing sport 3 times a week outside school. And still the problem persists and still he is told he mustn' t persist in these causal habits he doesn't do ! The constipation has not been an issue for years and we still monitor and adjust if any hint of less than 'optimum performance'.

Oh yes and most recently, if you weren't overweight you wouldn't wet the bed (Give me strength!). I questioned that since wild weight gain had been in last 2 years, what did she think had been 'causing' nocturnal enuresis prior to that?....

I wonder if some of these' causal' factors should be regarded more as common symptoms rather than the other way round..

There is some interesting research out there about vitamin supplementation (are enuretic kids commonly deficient/low???? ) - especially Vit D , Omega 3 fish oil, B vits esp B12 which is worth googling. We have played about with this to some discernable positive effect.

Sorry - that was a bit long.

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Cecd in reply to halftime

PS your reply was not too long! 👍

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Cecd

Hi halftime

Thanks for your fantastic reply, it’s so good to hear from others going through a similar situation. I love your crazy mother step comment and yes I totally agree with all your comments.

I’ve been fairly lucky with medics. I’ve not mentioned that my son was also daytime wetting, so we quite quickly got seen by the continence service and a urologist. We had a few frustrating conversations about fizzy drinks etc so I do know what you mean.

My son takes oxybutinjn hydrochloride for daytime wetting and this is a very rare occurrence now, thankfully. Medics did try altering the time of day when he took this to see if it would affect the nights but it didn’t. He has had desmopressin but this had no effect. I recently asked the GP (he’s been discharged from the continence service!!!) if it was worth trying the Desmo again but he thought not. I had just wondered now he’s older whether it could work?

I will google the vitamin deficiency idea, so thanks for that.

Although I’ve put !!!! By him being discharged from the con service; that was partly due to him getting fed up of going and talking about it. He is very chatty and loves chats to adults and when he was younger he’d ramble on for ages, however since 11 he didn’t want to go to see the nurse and I didn’t feel she could do anything more so I had a few telephone consultations with her before agreeing we were ‘moving in the right direction’ and so were discharged.

Although it’s great to hear from you and other families, there’s also an element of worry/sadness when I hear your son is 15, will it ever end? When my son was about 7 or 8 I felt quite depressed reading about children who were still wetting at 13 and here I am.

I do feel it’s really important to focus on all the other wonderful things going on in their lives and to get a balance between this and checking his fluid intake and trips to the loo before bedtime.

Thanks

Gym2020 in reply to Cecd

I’ve just read your comments and I could actually have written them myself! My son is 14 and we have experienced absolutely everything you talk about.

He has been on medication for years with very little or no affect at all, we no longer go to see the nurse as she simply says the same thing, just carry on drinking lots during the day and make sure you double void last thing at night and it drives my son mad! My son too sleeps like he’s dead and I really can’t help think there must be a link.

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halftime in reply to Gym2020

Hi gym2020. The sleepiing like the dead thing is quite common amongst our enuretic children. Have you ever investigated sleep study's or had that suggested to you? There doesn't seem to be much current useful research interest in enuresis , especially in older kids. And the 'received wisdom' advice just doesn't cut it, to my mind.

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Mumof3L

Hello

I wondered if you could give me the details of the PJ's from Sweden that you mention? These could be a real help for my son to be able to go on sleepovers. He is really feeling he misses out on this

Best of luck to everyone on finding a solution xx

Cecd in reply to Mumof3L

Yes of course. They are very expensive, but they work! My son is 13 and very tall so I had to buy the adult size. Look carefully at the sizing. I think I found them on the ERIC website. The company is called pjama.

Good luck

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Mumof3L in reply to Cecd

Thank you so much! X

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