Child Bladder Incontinence, can anyone give me any advise?

[LindseyJane92]

This is going to be quite a lengthy post but I want to be sure to include all relevant information. I feel so isolated and really need some help with my daughter.

So here goes...

My daughter is currently three years and seven months old. From the age of eight months she began to develop chronic constipation after I began weaning her at six months old. For two years she was treated with 1 sachet of Movicol daily which was very successful at achieving normal bowel movements. however at 2 1/2 when I first introduced toilet training I found that due to the movicol it made it very difficult for her to achieve bowel continents, she also wasn’t doing very well with achieving bladder continents so I made the decision to abort potty training until a few months later when I began again. During these few months I was able to cut down on the frequency that she needed movicol as her bowel was able to cope with the lesser amount. When I tried toilet training again this time she was able to do almost all her poos in the toilet, however she was still really struggling with wee accidents. A few weeks in and still no improvement and we had to abort toilet training once again, this time due to a severe urine infection. I waited two months which then brought us to the beginning of the month of her third birthday, this time I felt she was doing really well, much better than any previous attempts. During this period she managed 14 days without a single accident, However after a few weeks she began to have several wee accidents which overtime got more and more frequent, very rarely these included poo accidents. At the age of 3 years and 4 months old, And after finally being referred to see a paediatrician I was advised by the consultant to once again return to nappies until further investigation. It was at this point that the consultant made a referral for my daughter to be seen by the urology department at great Ormond Street hospital, however within two months we received an email stating that they would not accept her as she was under five. The consultant arranged for my daughter to have a ultrasound scan done on her bladder which confirmed residue urine still left in the bladder after avoiding. He then made the decision to refer her to a community based bladder and bowel clinic, however once again she was turned away because of her age. I am now working with my health visitor to gather evidence to support my claims that I believe the reason for my daughters inability to achieve bladder continents is down to a medical issue that has not been diagnosed. The bladder and bowel clinic have agreed to see her following her fourth birthday which is coming up in March 2020 but for the meantime I am dealing with anything between 4 to 12 wee accidents a day. My daughter expresses no anxiety towards using the toilet, she is more than happy to wear knickers but has become frustrated recently expressing her upset that her “wee comes out all by itself”. I have no concerns with constipation any longer as she has been several months without needing Movicol, and I have no concerns about her bowel continents. I am currently in the process of viewing primary schools for my daughter to begin attending reception in September 2020, but fear that she will not have received any support in achieving bladder continents. I worry how the school will accommodate her if she does not have any form of diagnosis and I worry how this will impact on her self-esteem and relationships with friends. My question therefore is has anyone experienced anything like this with their child, if the answer is yes I would love to know some further details on how you coped with it, if there was any diagnosis made and what support you and your child received.

[Heidi_hi78]

Hi please feel free and read my story .schools have to help with incontinence issues own toilet make way for a bag full of pull ups pads uniform e.c.t I do understand where you coming from even with a diagnosis don't think for one minute you get a t.a changing your child That won't happen many times I've had I'm a teacher or teacher assistant not in my contact .we found reception the hardest for us .the school nurse was useless as today they to busy with safe guarding .by the end of year 1 we as parents did the care plan school nurse had nothing to do with it my daughter has a toilet to herself it's a medical needs toilet .things like skorts for p.e works brilliant no one sees her pull ups long socks as my daughter finds tights difficult.the Polo tops longer go a size bigger to cover any showing of pull ups .a incontinence watching whick virbates can set it at 8 different settings we payed £40 for that it's a fantastic £40 we spent gives her more independence have regular meetings with your child teacher to let them know how things are progressing like appointments what the next is please don't think teachers will out a pair if gloves on and change your child they may to the toilet talk your child through the changing progress..we now have a diagnosis makes no difference you won't get a 1 to 1 coz of incontinence good luck with your story and child hope you don't go through what we gone through we had a very rough ride for 3.5 years to get the answers x

[MrsSquirrel]

Our experience and pointers are:

Yes pursue diagnosis, it can be a long road trying various things. Keep records of how many wees/drinks/volume of wee. Get her to drink plenty. A bottle or cup in school can help.

Talk to head and senco and teacher before she starts. Outline that it is very likely she has a medical condition resulting in continence issues. Say where you have got to and that you are seeking referral. NICE have a pathway or talk to ERIC for guidance so you don't get fobbed off by anyone.

Tell school you want an Individual Healthcare Plan drawing up. They are obliged to do this where there is a need as there clearly is here. IHPs are frequently drawn up for continence issues.

This should detail (for example) any medication, as well as support such as prompting to change (a TA can take a child to toilet and wait outside and make sure they have their bag of clean clothes to change)

Disabled toilet good as plenty of room. We have a little cupboard in our one at school so our son can store his change of clothes and pads in there.

We have pad on for maths/English as wees were very disruptive. He wears pullups for school play or trips out on coach for example and is prompted by TA to put these on/take them off. We also have communication via home school journal about supervised drinking as ours does not feel thirst and so would go without unless guided.

It took until Y4 to get this all in place, so you have the benefit of our hindsight!

Make sure all teachers and others like dinner ladies TA's etc are fully aware of your daughter's problem and that it is not under her control. We had ever such a lot of negative comments like - doing it on purpose/pretending to need wee just doing it to get out of maths/assembly etc. Utterly incorrect - ours has bladder which does not fully void so high residuals. Still no diagnosis apart from vague noises about dysfunctional voiding. Tell school that it can take years to get a diagnosis as bladder quite complex to investigate and NHS trial various methods such as 6 months on x medication, then try another 6 months on y medication, plus double voids, timed voids, bladder scans, MRIs and invasive procedures often take a long time to come through.

Get referral to continence team - nurses often very good, and you often have to do all their assessments and methods first before going to tier 3 which is consultant led care.

Good luck. Post back and let us know how you go on. Be a velvet bulldozer and keep asking and bothering NHS/school until you get progress.

[Kate_monster]

I just came across your post and noticed how similar an experience our children have had! My daughter is 6 and in year 2 now so I can share some things we have learnt.

Getting seen at your community clinic next year sounds great. Our referrals were turned down until she was 5 and I remember how much more in control we felt once we started to get advice. But you can start to follow continence guidance now and if she’s still having problems you can tell them what you have already tried.

ERIC have a good leaflet and helpline. The main things we started doing are stopping little sips of drinks and having 6 big drinks a day of the right amount for her age. We then ask her to try to wee 20 mins after finishing and also try for a poo for 5 mins 20 mins after a meal. We encouraged her to support her feet better on a step and to double void (stand up count to 10 and try again). We also stuck to a regime of Laxido/movicol to ensure she wasn’t constipated.

We found pants too much with such frequent accidents. My daughter found her skin got sore using them but until then Dry like Me pads were great and she could change them herself from age 4.5. We now use ID comfy junior pull ups which are less rustly than bedtime pull ups.

We worked with school to write an individual healthcare plan. It includes a checklist for times of the day to remind her to drink and wee and a section for comments. In reception, staff frequently helped her change. This dropped of in year 1 as they want kids to be independent. However we have a good balance of her doing things for herself but If she gets stuck can buzz for help on a walk talky. I recommend using a different toilet at school where you can keep spare clothes and pull ups. Kids can be very nosey and if may save your child answering lots of questions and give them more space and privacy.

I think you’ve had some good advice in the other posts. Talk to schools about it, ask for a healthcare plan, involve their Senco lead and the school nurse team. A school nurse even came and gave continence training one inset day for us.

As far as support goes we have had very little. Eric helpline are useful as is this forum. I found other mums i trusted to talk to but as children get older people do talk about it less. As a family it has been difficult as we have to remind her to drink and wee all the time and spend a lot of time in loos helping her change!

My daughter has been very brave but at times it has knocked her confidence and made her feel angry and worried. It has helped to teach her about how bodies work and why hers might not work well yet. We talk about sneaky wees and poos so there is no blame on her.

We had a diagnosis of overactive bladder but that sounds misleading as until recently she had little sensation or awareness. Having tried laxatives, continence protocol, ultrasound, 2 medication, weed on a special flow rate toilet, she will have an MRI in a few weeks (aged nearly 7). So you can see it does take a while to get more investigations, partly because they become more invasive.

In the meantime it’s ok not to know why (although frustrating!) and it’s important to just reiterate that it’s not a behavioural problem or refusal to potty train but for some reason she isn’t physically able to do it yet. You’d be surprised how supportive people are of young children having continence problems. Good luck getting the help you need.