Nocturnal Enuresis

[sheuk]

I feel like I'm going out of my mind, I used to use ''dry nites' for my son (9) because he wets the bed EVERY NIGHT, after a visit at the enurises clinic I was told ''scan all his drinks and food to make sure there is no citric acid or added vitimin C''----ok it costs more to get drinks other than orange juice or squash but I'm doing that, I was also told, ''make sure he doesn't drink milk after lunch time''---ok I'm doing that too and -this is the one that's currently driving me insane- don't put dry nites on him---I'm a single parent on benefits so don't have a vast amount of money anyway but every single day I'm now having to wash his pyjamas, his sheet and his duvet (no it's not just a little dribble he does, he soaks everything) my house currently smells like a public urinal that hasn't been cleaned for the last year and I'm trying to keep calm because I know it's not his fault but after I took him and his brother to school this morning I came home and cried my eyes out--it's alright for the doctor at the clinic to say buy expensive drinks not the cheaper, more readily available ones that are cheaper, and not to put a dry nite on him but she doesn't have to pay my electricity bill, I'm on a meter so once the electricity has gone it's gone and to make things worse the social have recently changed the way they pay me from weekly to fortnightly.

I don't know how much longer I can cope with this, even writing this post I'm crying my eyes out.

I currently in receipt of DLA at the lower rate for him for a problem with his legs that it took 7 years for the physio to declare has something to do with his aspergers and I phoned DLA yesterday to have his case reviewed again hoping he can get the middle rate but until or when that happens how do I cope?

sorry if this post seems in approate but I just don't know where to turn, I tried searching for an online support group for this problem but couldn't find one

[dixie]

Hiya,

 

Aw I know just how you felt I have replied in depth on your other thread but just read this one as well, I would definately try to have your DLA reviewed My son is Middle rate with lower mobility he was Higher rate care for the first 4 years but they dropped him down to middle and told me I should lift my son. I accepted the middle rate after speaking to his specialist who told me it would be hard to prove otherwise and he thought it was about the right level for my son, but I do think that you should be entitled to more help than lower rate.

 

If you need any advice just holler or just someone to talk to etc.

 

dix

[sheuk]

Hiya,

 

Aw I know just how you felt I have replied in depth on your other thread but just read this one as well, I would definately try to have your DLA reviewed My son is Middle rate with lower mobility he was Higher rate care for the first 4 years but they dropped him down to middle and told me I should lift my son. I accepted the middle rate after speaking to his specialist who told me it would be hard to prove otherwise and he thought it was about the right level for my son, but I do think that you should be entitled to more help than lower rate.

 

If you need any advice just holler or just someone to talk to etc.

 

dix

 

 

Thanks again Dixie you really are an angel, I'm sure I'll get through this, or end up being sectioned trying lol, it is nice that someone else out there understands. I did read your other reply and think it's discusting that DLA told you to lift your son, it just shows how much ignorance there is with this problem

Edited June 10, 2009 by sheuk

[sadie]

Hiya Sheuk

 

I had the same problem with my DD for many years. At the enuresis clinic we tried every possibility including cutting down on drinks, alarms, etc etc. When all other avenues had been tried it was suggested I go to my Dr. for some medication. Can't remember what it was (and even if I did don't know whether I could mention the name here) but it did the trick. DD was on the stuff for years but eventually I was lucky and she decided to wean herself off it and now one year on she is completely dry.

So next time you are at the clinic ask about the possibility of medication.

[dixie]

Yes I agree with sadie each to there own preferences and opinions on medication unfortunatly it did not work for us but as I keep saying each child is different. Speak to your doctor about possibilities.

 

take care

 

Dix

[Sally44]

Definately try to re-apply for DLA. Also see if there is an organisation that can help you complete it properly. Our local council has a benefits advice centre that is independent and can do a whole benefits check and help you complete forms. Sometimes we don't know what information they want and can lose out on money. Autism is not a physical disability, so you need help completing it.

The only other thing apart from those already mentioned is to ask whether he has sensory integration difficulties.

My son fluctuates between hypersensitive body sensation and no body sensation. This can affect his ability to feel whether he needs the toilet or not. So sometimes he will go to the loo all the time, and at other times he feels nothing and wets the bed. I tried using weighted blankets to help him feel his body sensation and that definately helped. You can get the same effect with tucked in sheets and a blanket on the top.

I also made him go to the toilet twice before bed ie. once when he went up to bed, then approx 15 mins later after he has brushed his teeth and read a story.

I would also look into getting the pull ups free from the incontinence clinic. I don't know exactly how to do that, but I know other parents have done this.

[NobbyNobbs]

our night wetter (9, every night) was a tough one to crack. she was also day wetteing, but that was more a habit issue. for the night wtteing we had her in drynites while she tried the medication, which didn't seem to have any significant impact, which led the eneuresis specialist to believe it was either intentional wetting, or a lazy bladder that was leaking as she was waking in the morning. in the end they gave us an alarm that went off as soon as she started wetting. that worked like a charm. it also meant we couldl track the time of night she was wetting and establish that it wasn't intentional.

 

have you tried using pampers bed mats? i believe tena do adult ones that are similar, cheaper but less practical. its like a giant flat nappy and you can put it on top of the bed sheets to absorb the wee so you dont have a wet bottom sheet? we used this with the alarm, and took away her duvet, and instead gave her a flat sheet and a fleece blanket, which was a lot easier to wash so the house didn't smell so bad. if they dont want him in nappies because its comfortablel and convininent then that might be a good compromise - you can nag them to give them on prescription for him.

[Mum of 3]

Hi Sheuk,

I've replied at length on your other thread. Just want to say you're not alone! <'>

Try not to let it get you down, and keep trying till you find something that works for you!

[sheuk]

thanks everyone, I can't tell you how much it means to me to know there are others out there with the same problem, I received his DLA review forms today and feel like I have written a book--lets hope it's a best seller lol, seriously though, I just have to dot the i's and cross the t's now, y'know chld benefit no, dr's name and address ect... hopefully they will find in my favour

Sadie, I found your answer really interesting, it makes sense to cut down on the fluid intake but I was told to increase my sons, he now has to have two drinks with his breakfast whereas before he didn't have a drink with breakfast, he also has to take a bottle of water into school with him to drink during lessons (obviously the doc wrote a letter to the teacher emphasising the necessity for this) -----not good for his asd, it just shows the other kids in the class that there is just another way he's different, ah well, if it works, brilliant, although up to now, no joy my washing machines on overload and my son is fretting about anyone coming to stay in case they find out he wets the bed (the dry nites was actually his idea, he saw them advertised on tv and was happy with them as long as I kept them hidden when I did the shopping)

again thanks to everyone for your support and I'm sorry for the dramatics of my initial post it was just one of those days

[NobbyNobbs]

Sadie, I found your answer really interesting, it makes sense to cut down on the fluid intake but I was told to increase my sons, he now has to have two drinks with his breakfast whereas before he didn't have a drink with breakfast, he also has to take a bottle of water into school with him to drink during lessons (obviously the doc wrote a letter to the teacher emphasising the necessity for this)

we were told this also, and feel it really did make a difference. we were also told to cut out blackcurrant drinks as this did something to the bladder. everything in your mind says he will wee less if he drinks less, but it just doesn't work like that with eneuresis. we gave rewards for drinking at first, to break the cycle of 'no i dont want a drink' i think we gave 2p per empty cup, it wasn't much to us, but to her the pile kept growing and she really liked seeing herself doing so well at it. we were also told waking her in the night to go to the toilet would not help her. she wouldln't be consciously making the move, so it wouldl do no good in the long run.

 

have the doctors given you why they think he is wetting? and given a reason why you can't use the drynights? i think we would've been driven insane if we'd had to wash wet sheets each morning. she was allso going through 3/4 changes of clothes a day so the drynites at least gave us a break.

[bensmum2]

Hi again i have already left a reply about the enuresis on your other post but have just seen this about you bneing on a low income, i thought if you really struggeld you could get your money changed back to weekly, not 100% but try welfare rights or child poverty action group for advice, my son already got dla lower mobility middle care for other problems but when he started bed wetting i got the care increased to higher, you have to be up so long in the night changing sheets etc washing him and resettleing him , my son doesnt alwasy settle straight away after , if they say you should lift him , the enuresis advice is against that so get a letter from the nurse, also ret the family fund you can get granst only once a year but on benefits there is no argument you dotn even have to tell them your income , you can get about £400 for a holiday and other stuff bedding etc. if you can afford it one week maybe when he gets his dla, buy a pack of dry nites or pads and just forget it for a week we do this occassionally and we have had it for 7 years now its part of every day life, but a few nights where it doesnt matter doesnt hurt and recharges your battery i todl my nurse we were doing this and after trying everything else she agreed although not advisable it at least gives us and the washing machine a break !! do you get carers allowance or premium in your benefits ? you are entitled to it if he gets middle care and also you are allowed to earn up to just over £90 and still get this , if you are on income support yuo wouldnt be so much better off but still around £30 a week i think and go for the higher care dla for the nights, good luck , o and dont panic i think at 7 years wetting, we are the exception to the rule, most dont last that long i'm sure xx

[sheuk]

Nobbynobbs:- The doc didn't say why my son still wets the bed just gave me instructions to follow and a star chart and is supposed to be sending another appointment before the end of term, as far as the increase in drinks go, as long as I stand there and watch him drink he will do it, the blackcurrent thing you were talking about is something to do with the possibility of a sensitive bladder, my son isn't allowed blackcurrent or any squashes, fizzy drinks or fruit juice containing citrus acid (orange juice, ribena, mango juice ect) oh and no milk after lunchtime, I've changed the drinks to pear and grape, black grape and guava juice. Not using the dry nites-- I really don't know why the doc said this I think she thought I was being lazy by putting him in them, but I think your right, if he agrees to having one on again the next time someone comes to stay for a couple of days I'll talk to him about wearing one and just tell the doc that he has been doing some serious worrying about this situtation arising---how long roughly was it before you noticed a difference in your daughter?

 

Bensmum2:- thanks for the advice, I had looked into the family fund but they can only help if my son gets middle or higher rate DLA for personal care, at the moment he still gets lower rate but I'm in the process of filling out the form now hoping for the middle rate which also of course means I'll be able to apply for carers allowance so won't be hassled by the job centre so much ( I was working as an unpaid volunteer for the past 4 years so that I could get time off without too much hassle when my son needed me )that's been fine up to now but from October this year the law is going to change to say that if you have a child over the age of 9 you should be in paid work-a carer getting carers allowance would be omitted from this, I do worry about the fact that he won't go to after school clubs because he detests every aspect of school and from September it's going to be even harder for him, the school he is currently at is being closed down following a series of bad ofsted reports so he has to go to a new school in addition to this he relies heavily on my second youngest who's 11 for company--they are very close, anyway the 11 year old will be going to secondary school in september so my 9 year old will be in a new school without the support of his brother

[bensmum2]

HI again sheuk, at least you already get some dla, you should get higher care if you are up at night as i said if you have to change beds wash and change yuor son and sometimes he doesnt settle so you have to spend time awake with him in the night regularly you should get it, even if they say lift him , that still mean you being awake to lift him several times a night and even that could disturb him and so he might not resettle rigth away so you are up longer, if you dont get at least middle you should appeal, a very high percentage of appeals are successful, i have helped loads of people get dla and never lost a case, i am registered blind and my own middle care was put down to lower on review, they said i should be used to nbing blind by now!!!! i wiped the floor with them verbally!!!! anyway i had to appeal in writing but it only took 3 weeks to get it back!! dotn forget if you do get carers you can still earn just over £90 a weeks as well without losing any of course you wouldnt get income support though ,but you would get tax credits and being a carer would mean you get a bit extra tax credits, just a thought !good luck X

[NobbyNobbs]

how long roughly was it before you noticed a difference in your daughter?

our situation was a little bit different as she was a foster child and when she arrived aged 7 she wasn't toilet trained at all. it took 2 years (with a 5 month break while she lived somewhere else, i dont know if they followed the guielines or not) but by the end of it she was dry every night, although still using the alarm for confidence.

 

we started her on dry nites the 3rd night she was with us because she was upset about it and with all the other things she was upset with, this seemed like the perfect solution (she later informed us she had been wearing baby nappies at home - she was very small for her age). she continued with them for about a year and a half while we first tried nagging, and waking her to go to the toilet at night, but that didn't work. then we started on the medication which very occasionally gave her a dry night, but we think that was more down to luck than anything else. they gave us the alarm and continued her on the medication and the combinaion worked for us, right from the start. the alarm (worn with normal underwear) very rarely went off, usually around 2/3am, which for us confirmed it was just a lazy bladder that needed strengthening. after about 1 month of this the alarm was going off maybe once a week and after 2 months she was sorted compleltely. but she did want to be dry, which i think is a big thing. if the child doesn't want to stop wetting then no intervention is going to work, we used lots of different reward systems for different aspects, because we were also tackling day wetting.

[bensmum2]

Hi Nobbynobs, i was just wondering how yuor daughter didnt have the problem with the literal thinking we have, as he only wakes when the alarm goes off, which only goes off when he starts to wet, he says its the alarm doing it and he never accepts he has wet when we go on holiday and use "sleep pants" for the sake of hygiene and also so he can relax and not worry. He can go to the toilet in the night himself and often does but still sometimes wets even on those nights , it does seem related to school though but no one listens, its practically every night in term time and in holidays its much less. bensmum2

[NobbyNobbs]

that sounds more like denial than anything else. we had a lot of that. she'd say shed done really well and hadn't wet, and there was a wet nappy saying otherwise. we always took her to the nappy, showed her that it was clearly wet, told her how we knew (colour, weight, visual) etc, so that she could understand. with the alarm we let her play with it first, so she had it sitting at the table not going off, then we wet the sensor and off it would go, then dry it off and the alarm switches off... that way she clearly understood the only time the alarm went off was when there was liquid on it, and it wasn't the alarm causing the wee, but the wee causing the alarm. we also explained how the alarm would help her, by making her jump when the noise went off she would tense her muscles and that would make her stop weeing so that she could go to the toilet and do it in the right place. it took a lot of talking and explaining, but it worked for us.

[bensmum2]

Hi Nobby Nobbs, sorry but i dont agree, in my opinion what you do with the nappies seems to be trying to shame your daughter into being dry! the alarm , so i have been told isnt to "make them jump"and stop weeing , rather to relate the sound of the alarm to the sensation of needing a wee, i'm not sure if your daughter is still wetting and i also think different things work for different children, but we have trid so many things over the years and i wont shame him into it! It is just something that happens and doesnt matter for now that is how we have learned to live with it, but it is definately a term time only thing and if you look at other posts on here, quite common in aspergers children. Incientally the noise of the alarm in itself distressed him because of his sensory probems so we couldnt win!! , but i appreciate your opinion.

[NobbyNobbs]

Hi Nobby Nobbs, sorry but i dont agree, in my opinion what you do with the nappies seems to be trying to shame your daughter into being dry! the alarm , so i have been told isnt to "make them jump"and stop weeing , rather to relate the sound of the alarm to the sensation of needing a wee, i'm not sure if your daughter is still wetting and i also think different things work for different children, but we have trid so many things over the years and i wont shame him into it! It is just something that happens and doesnt matter for now that is how we have learned to live with it, but it is definately a term time only thing and if you look at other posts on here, quite common in aspergers children. Incientally the noise of the alarm in itself distressed him because of his sensory probems so we couldnt win!! , but i appreciate your opinion.

well, i disagree with you, so we shall have to agree to disagree! showing and explaining why the nappy is wet isn't shaming her, its explaining a fact. she knows she wet the bed and is perfectly open about it, we felt allowing her wetting to become a little secret wouldl only embarass her more when we had to talk about it. allowing her to pretend she didn't do it would do her no good at all. she didn't cry after we explained that no, the nappy wasn't dry this time but by explaining how we could tell it was wet it meant that in the future she could identify it herself - and identify when the nappy was dry. shes completely dry now, as i said before with the alarm it took about 2 months, but she was mentally very ready for it to happen.

 

as for the purpose of the alarm, i've said what we were told at the clinic, perhaps it has multiple purposes.

 

i fully understand people have different ways of dealing with things, and that every child is different but personally, i wanted her to overcome that problem so she could have a more normal life and not have to worry about sleepovers etc. not an issue with your son, but we were also racing time to get her dry before she began puberty so that we didn't have nappies in the way when dealing with other things.

[dixie]

This is what frustrates me you can follow all the guide lines but ultimately its down to the differences in each child what will work for them, In our case definately the alarm did not work we also used the one that tucked into the underwear, We were told I was not allowed to turn the alarm off for him that he had to do it himself, as he had difficulties with noise in the outside world anyway we really struggled with it, the alarm just sent him into a major meltdown he would wake up confused even though he knew how the alarm worked and what it meant when it went off it really sent him into a state of distress where he was so confused he could not shut off the alarm because he was so much in a state of panic and I would have to calm him so it worked against us.

 

Also with regards to the medication, again I saw no difference my son had taken note when at the doctors the advice he gave me on the side effects of the medication ie not to drink an hour before the medication was given because could cause serious side effects which in turn left him panicing when he took the medication whether it was safe to do so. This has now left him with a fear of medication in general where he has to read the labels and back of boxes to make sure I KNOW what I am doing.

 

I was also told to remove all nappys and to NOT use dry nights at all, (where as others advocate using them). this was giving a signal that it was safe to wet.

 

I encourage him and I make sure he follows guidelines placed thats all we can do at the moment I am just hanging in there with the hope that all will magically fall into place at some point.

 

I don't think anyone is right or wrong it depends on the child in question and lets face it we as mothers or fathers or foster carers and guardians of Autistic children we are always facing critasim (sp?) from outsiders who know no better. I think until we have all walked in one anothers shoes its not fair to judge. It is just not productive.

Edited June 14, 2009 by dixie

[NobbyNobbs]

In our case definately the alarm did not work we also used the one that tucked into the underwear, We were told I was not allowed to turn the alarm off for him that he had to do it himself, as he had difficulties with noise in the outside world anyway we really struggled with it, the alarm just sent him into a major meltdown he would wake up confused even though he knew how the alarm worked and what it meant when it went off it really sent him into a state of distress where he was so confused he could not shut off the alarm because he was so much in a state of panic and I would have to calm him so it worked against us.

we had trouble dealing with the alarm too. we taught her to pull the sensor cable out to shut it up instantly, rather than turning it off in the correct way, but often she would come into our rooms with it still going, so we would sort it out and hustle her to the bathroom quick. obvioulsly for a child with major sensory issues the noise of the alarm isn't going to work, but everything is worth a go.

[sheuk]

thanks, we haven't been offered the alarm yet although it was mentioned at his last visit, as an adopted child myself I can understand why it was thought your daughter might be wetting on purpose (glad you were able to prove otherwise)I remember I did everything to prove my new family wouldn't keep me and I know I used to really upset my adoptive parents with my behaviour, good luck with that, if your daughter does push the boundries it's just because she doesn't feel worthy of you as parents it's kinda difficult to explain, as I said, you really do have my admiration and I hope your daughter doesn't put you through half the things I put my parents through

[sadie]

Hi there again....been very busy so haven't had the time to revisit this thread before now.

Yes ,we were told to increase fluid intake in general but to reduce the amount given after the evening meal. We were also told to avoid the blackcurrant and certain other drinks. We tried the alarms But DD got v. distressed. The medication was a last resort for us, and frankly I wasn't keen on the idea in the beginning. I mentioned it because I wanted to point out that there were other things that maybe you and others were not aware of.

For us it made a huge impact. DD was able to go on her first school holiday.......I didn't want her to go in pull ups and be teased for the rest of her time at her school. She was 10 at the time .....not an age at which it is cool still to be in nappies! DD continued taking the medication until she was 13 and by the time she had reached that grand age she had been on numerous holidays, with school,brownies,guides and ASD specific organisations. So it gave DD far more opportunities and also we got a little time to ourselves.

Hope you manage to sort out your problems at your end...there can be light at the end of the tunnel.

 

Sadie