Help needed

[77mummy]

Hi all, this is my first post so be kind!

My 9 almost 10 yr old son has always wet the bed. When he was younger I was told time and time again that he would grow out of it. Last October after some begging my GP put him on desmopressin which initially worked for a couple of weeks, then we went back to bed wetting. GP then doubled the dose, again saw an initial improvement but went back to bed wetting. This is when I then pressed for a referral. I bought an alarm while waiting for a referral. This wakes everyone in the house apart from my son. We still wake him about 10.30-11 every night to go to the toilet. Which he never remembers when asked in the morning. Saw consultant in April, and he is now on Oxybutinin 2.5 in morning and night. Initially this had an impact and we saw this staring to work alongside alarm. My son then wanted to stop alarm which we did. Since being on school hols (diff routine) everything has gone wrong. He is wetting untold amounts. He has been wearing huggies PJ pants but even this can't hold the amount of wee he is producing of a night. I really do not know what else to do. Next appointment with consultant in sept.

Questions I have and things we've tried:

1. What else is there to try after oxybutinin as everything I've read has lead me to believe this is a wonder drug for this issue?

2. Are there any other nighttime more absorbent pants I can get him? He is a big boy for his age and I just think these are now becoming too small as well as him producing untold amounts of wee.

3. I am worried silly about a residential he is going on with school next May for a whole week. What can I do?

4. I believe he has an overactive bladder as has sudden urges to go during the day. There has been times he used to leak, however I feel he no longer leakes during the day since being on oxybutinin.

5. I've started setting his watch to vibrate every hour so he goes to the toilet to empty his bladder whether he feels he needs to go or not. We did this before school holidays started and I think it helped. We then went on holiday and like everything routine went out the window. Got back at the weekend and today got back to going to the toilet every hour.

6. We have stopped blackcurrant now for about 6 months.

Any help or advise from anyone in the same boat would be really appreciated. TIA 🙂

[mumtoL]

Hi there, firstly sympathies with what you are going through - I have a nearly 10 year old girl and we have been through much the same.

Try and encourage your son to drink as much water as possible throughout the day (use his watch also to remind him to drink) avoid all fizzy drinks too as well as blackcurrant/sugary drinks.

My daughter was on 10mg oxy & 1 desmo-melt & night. We have recently been able to successfully reduce her to 5mg oxy which has given us light at the end of the tunnel! We tried then to take her off oxy completely - she managed 3 nights before wetting again! We will try again in a few weeks.

The key for my daughter is ensuring she has 2 'wee's' before bed. One before bath/shower & crucially, another one before she goes to sleep after she reads. With this routine and the medication - she now hasn't had a wet bed in a long time. However, I think it will be a while before she is off meds completely!

I would recommend getting the stick on bed Mats (Huggies) rather than the pants as then your son will be able to feel when he has wet himself (even if it's not until morning!) We put ours under the sheet so I only have the sheet to change.

It is horrible for them & very stressful for us parents - my daughter also has residentials coming up & it is a worry. I would definitely push to see a specialist as our clinic has been a great support & ask for his med dose to be increased to get him on track.

Hope this helps,

Lisa

[Georgina1475]

I used the stick in bed mats under a sheet but had another sheet and stick on mat under that so that changing the bed was quicker and easier if accidents happen at night time.

[AliStan]

Hi, my daughter has an overactive bladder and Oxybutin did absolutely nothing for her! We eventually got referred to specialist children's bladder clinic and consultant there put her on stronger drug (which isn't officially licensed for children but is for adults) plus we were using Tens machine. Both are aiming to try and relax the muscles around the bladder so it could stretch and hopefully eventually get control. It's a long road, and they warned us it might be, but am doing wee diary today ahead of follow up with specialist (measuring what volume goes in and comes out - lovely!) and so excited as for first time ever when doing measurements she managed to do a >200ml wee. (It's crazy that that should be so exciting but we both did a little jig round the kitchen!!)

My (non-medical) opinion is that it's worth trying to get confirmation of overactive bladder from specialist because if it is that then the only way to train the bladder for the longer term, based on what I've been told, is to keep stretching it and so whilst the hourly wees are helping cope with the symptoms (and we follow same logic at school) it may not be helping solve the underlying problem.

At night time - you didn't mention it, but the other thing we were told is to not let her drink after dinner so that there is time for it all to get through system before bed combined with the double wee that MumtoL also mentioned. That's seemed to help reduce volume of wee in night time accidents.

In terms of the residential - we've got one coming up this year. I'm worried but the school have been absolutely brilliant with my daughter through out so am just going to have to work with them to plan how to get through it. We're "lucky" that the night time accidents are small enough to still stay in DryNites so she'll have to have them with her and plenty of spare clothes just in case! Also, we've always been quite open about the problem and so she has a group of close friends who I think will rally round if there's a problem. Are the school aware of the issue with your son? If so, I'm sure he won't be the first that they've had to help through it but it won't take away the stress for you.

Hope some of this rambling helps, but importantly know that you're not alone, sadly there are too many others of us on this site who know exactly how you feel. Best of luck. xx

[77mummy in reply to AliStan]

Thank you. Can I ask the name of the stronger drug? Would like to do some googling and go armed with research on our next visit to consultant. Also with the Tens machine, when do you use it and for how long? Yes we do the double wee before bed.

My son unlike your daughter does do a huge amount of wee, each time he goes, this has been measured in the past and they never had an issue with how much wee his bladder was getting rid off. His bladder does hold a lot of wee, but scan shows his bladder has a very thick wall, much thicker than it should be for his age.

In the last week or so, since getting back into a routine, things have been better. Less wet beds. When in a good daily routine and he isn't tired things do get better.

My concern about the residential is he will be out of routine and tired, I will need to send him in pj pants. Therefore because of these factors he will wet the bed and the pj pants will not be able to contain the amount of wee, so what else is there I can send him with to the residential?

Thanks for all the replies x

[AliStan]

The tablets my daughter is on are Mariosea 4mg XL - Tolterodine tartrate - but as I said, they do say not recommended for children but are specifically for overactive bladder. What the consultant told me though is (understandably) the hurdle for a drug to be licenced for use with children is set higher than for adults but that means that often drug companies just don't bother pushing for it meaning the kids have less options but often the adult drugs can help. Oxybutin is the standard one of choice for most peadiatricians as other drug companies have not gone for the children's licence. She's dealing with these issues in children day in day out and so I had to trust her. Key side effects she warned of were dry mouth (but I need my daughter to drink more so that works in our favour) and constipation - that's more of a problem if it happens and then we'd need to add Movicol to the routine but so far we've not had it!

Tens we had to use for 3 months every evening for an hour to try and relax the muscles around the bladder. Aim was to complement the tablets so giving a double whammy of relaxation. If your sons problem is related to the wall thickness as opposed to muscle spasm, I'm not sure it would work but no harm in asking. I know others on the site have asked different consultants about using it and they've not been aware of it as an option so wouldn't recommend it.

Am not sure there are any magic answers to any of this which is so sad for the kids and hugely frustrating for us Mums. We're waiting now for follow up appointment to redo tests and see if any improvement. Hope your appointment goes well. x