Does anyone else have a child with double incontinence? How do you deal with it?

[SunshinePine]

DD is 5 and has always had very sudden urges to use the loo for wees and poohs (2 mins warning at best) but was finally diagnosed as being doubly incontinent last week .

At home she can reach the loo in time but in Public, whilst travelling, or swimming we have little choice apart from putting a nappy on her.

I don't know any other parents with children like this, and was wondering how others manage to cope with it.

p.s. we also have two boys aged 7 and 9 so we can't spend all our time on her.

How does your DD feel about wearing the nappy?

She has worn them all her life and doesn't mind the nappy much, that doesn't mean that she doesn't care about the problem, she just doesn't mind the nappy.

I just feel that when she gets older (say 6 or 7) she will start to care about the nappy.

Have the hospital offered any intervention to help her become continent?

The hospital said it is most likely caused by nerve damage because she was premature, they said to leave it for a couple of years to see it it improves. If it does there might be something they can do, if not she may be stuck with it for life .

my ds is just turned 7 and so far is still in pull ups and showing no signs of awareness at all, he has just been referred and we are hoping answers soon, so far though he is still in pull ups and seems to cope ok, he does get upset but thats because his little brother has just been toilet trained and needless to say it upset him a little. he doesnt seem to mind at school and his friends all seem to cope ok, however i suppose that would depend on your dd's level of development. i have no idea of ds's level or mental age tbh, but he has speech and language disorder so isnt quite like your average 7 yr old lol

My DD is one of the brightest in her class by contrast so has no other developmental problems.
Her older brothers are both in nappies at night for bedwetting so this makes her feel a bit better.

As far as pull ups go DD gets a rash from all disposables so has to be put in terry nappies (the ones you have to fold)

Nice to see I'm not the only one out there !

dd is doubly inconyinent and wears nappies.

do not leave it! my ds has been intermittent self catherising for 2 yrs now, and the earlier they start the better, he's just 8 now

Get yourself referred to Anne Wright at Evalina Childrens hospital at St Thomas in London, she is worth the trip, they are total experts there.

Are you getting nappies/pads provided free - you are entiltled.

BABS - yes we are getting a "nappy allowance". The hospital said to us whether it can be treated or not depends on the cause and how severe it is. If it starts to get better naturally then the nerves need to be stimulated which is quite easily done, if it doesn't get better it is probably irreplaceable nerve damage and it can't be cured.

I don't know what caused your son's incontinence but it isn't always curable or we wouldn't have adults stuck with it.

sorry that last message should have read MABS not BABS!

my sons is nerve damage, he has mild cp - will never be cured.

Self catheterisation helps him a lot as he is able to be out of nappies in between doing the catheters. That is so important as they get older.

Has your daughter had bowel transit scans, urodynamic studies etc? ds has had em all. botox in the bladder can also sometimes help.

DD has mild CP,and is in happies,she is 4.7.

she isnt bothered at all about being in them and despite nursery,us and school trying to train her has refused to cooperate so we have taken the decision to leave her be as it was causing her distress.

she gets frequent water infections though and was hospitilized last week for one,the paed said it could be connected to her bowel difficulties but they dont seem to want to investigate at the moment.

that should have said shes in nappies,not happies

i'm surprised they arent investigating, ds doesn't get many infections thank god. Poor you Jenk, that must be v painful for little dd.

my local hospital were going to leave it, i insisted on being referred to the best consultant in uk after doing a lot of research.

DH has just taken her back up to A&E, her temp was 39.4 and she was crying and saying her belly hurts her.

she was in for 4 days last week,they did bloods and scanned her and said it was a urine/kidney infection,shes still on the Anti-bs they have given us.

i feel so for her.

Hope she is feeling better soon Jenk

jenk that must be hard, hope she feels better soon. ds3 hasnt had water infections, had sore bits a couple of times, and has a rash where the elastic of the pull ups go but thats it. round here they wont investigate till they are 7 so i got onto it the other month as ds was 7 on saturday so i thought i would get in asap. interesting to read about the blotox, havent had all the stuff explained to us yet, what does that do. ds 3 knows when he is going to the toilet, just not when he wants to go.
sunshine it must be hard when there are no developmental probs, i would just try to play it down asap atm, hope they can help her though.

I can sympathise! Sometimes the social problems and washing seem never ending!
Ds is 9 (he has ASD etc) and throws us many parenting challenges but the continence issues have often been up there with the hardest of the challenges! He is now seeing a specialist paed to help with continence issues. We have to travel to see the paed as I think it is a newish specialisation. He calls himself a Poo Dr.! There is medication to make bladder etc less twitchy and another to reduce urine production at night. His constipation medication has been changed, so soiling accidents (although they still happen if a loo is not handy!) are less frequent. We still don't get any practical help (like nhs pullups) and I have never found a product that doesn't leak at least half of the time!
However I feel positive - just having the paediatric nursing teams support makes a huge difference! (Pity the nhs cant do the laundry too!)
So I would advise asking for referral to a paed who specialises in continence.

totally agree Magso, particularly re the leaking but having the specialist team does help a bit.

How is she Jenk? poor little thing.

I think my ds may have to be fitted with a permanent catheter next year, his bladder is so distended and damaged now.

She is out,they didnt keep her in.

we took her to the GP today but she was reluctant to prescribe any more anti bs cos she has had 5 lots in a month.

today she has been running a high temp and ive kept her off school,GP wants me to take her back in 3 days when she,ll have the results of the urine sample.

spoke to her about getting DD tested because her bowel,bladder difficulties have been going on too long,and she said we are being sent an outpatients appt by a paed, which we are really pleased about,maybe someone may start taking notice now cos the last one was as good as a chocolate fireguard.

meant to add,managed to get her to wee on the potty this morning so could take a urine sample in,she was crying as she did it but i bribed her with a pound,she said no so i upped it to a peppa pig comic,she said ill do it for both so i settled on that!!!

she produced a really big one,i was really pleased with her,she has a bad phobia about using potties,toilets which we think is caused by an as yet undiagnosed bowel condition.

Asked the hospital and they said that they wont refer her on the NHS until she is 7 , and we can't afford to go private so we'll have to wait.

As far as training them goes you can only do so much, I view it as a major achievement that DD is able to use the loo at all. Sure we have about one accident a week but some 5 year olds aren't potty trained without having a medical problem.
She does get diarrhoea more excessively than other children (about 6 times a year) and that's the only time we put nappies on her in the house, but apart from that she doesn't get any other infections.

mum24boyz - She does have dyspraxia but the only thing it does is affect her hand-eye co-ordination slightly and makes her writing slow. I think the fact she doesn't have any other probs has it's ups and downs.
On a negative note she appears completely normal (don't mean to make that sound bad) so we often get glances by other parents changing their babies with the "why isn't she potty trained?" look.
On a positive note she has nothing much to worry about so she is not stressed or depressed and doesn't worry about the incontinence and nappies.

poor little scrap,sooo painful.

bump

Bumping for you.
Sorry for not noticing dd was only 5 - we had to wait till 7.6 for support. However the school nurse service was helpful especially in co-ordinating with school who used to exclude for soiling accidents on the basis Ds must be ill!
Ds was very premature too - I too was told 'it takes longer' for the nerves to develop to maturity. Well I can tell you what we do. (Nb advise we have is for boy!)
Swim nappies for the pool - awareness is harder in water I think.
Carry a towel for the car seat and changes of cloths and bag for accidents. Seat dc on cushion (to protect carpet/ sofa) if not in pull up! (we have floor cushions for tv viewing etc this is very discrete and allows minimal fuss if accident occurs)
'Sitting' (on the loo) time after meals and especially before bed ds gets his bedtime story on the loo poor child - but it reduces accidents!
Revisit the loo just before bed, going out.
Drink well early in the day to strenghthen the bladder. Check bladder volume (wee into measurer) every now and then - try for greater holding power (but not if infection involved)
No proper drinks 1.5hrs before bed time ( sips only)
Avoid acidic drinks ( Ribena, juices)HTH
(ds used to come home to lunch so that allowed toileting supervision and changing to reduce soreness but perhaps a member of staff could help with these things)
Good luck to you both.