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6yr old ASD DS and toilet problems - help and advice please

(26 Posts)
adelinehillman Tue 04-Mar-14 09:34:26

Hi All

My 6 year old DS has high functioning ASD. He's in mainstream school and doing okay but I am really worried about his toilet. He's in Yr2 and will change school for Yr3. Pretty much every day when he gets home I can smell urine on him, he's just not aware of when he needs to go to the loo. He doesn't fully wet himself. He also has problems with No.2's. Again it�s sensory in that he doesn't really seem to know that he needs to go until it starts happening. He withholds when he's at school, get constipated then with the help of laxatives has a very messy clear out - but at least this is always at home.

I know ASD and gastro problems are linked, but I am at my wits end with how to stop him from soiling himself. I am worried about bullying etc, at the moment this isn't happening, but I think its only a matter of time.

Does anyone have any experience or advice please?

Thanks.

zzzzz Tue 04-Mar-14 09:45:30

I think you need to talk to the school. The most sensible approach would be that he ALWAYS goes to the loo at break times. The teacher could facilitate initially by telling him to go before he goes outside. He will soon become used to using the loo at those times. You can support at home by suggesting at the same times.

The same for poos.

He may also be dribbling a bit at school. Nt children get in a muddle too well into primary school so don't feel embarrassed for him. Check his technique. Check he knows what to do if he has an accident (I would suggest he reports to the teacher and changes into PE kit/spare trousers and pants, make sure this is a good plan for school).

My ds is 8 and I am becoming more prescriptive to hygiene in general with an eye on the future and sweaty smelly teens.

PolterGoose Tue 04-Mar-14 10:02:10

We've had similar problems with ds.

A few things to consider:

- don't tell him to try for a wee too often, it is much harder to expel wee if the bladder isn't very full, this mixes up messages and stops him learning to feel a full bladder

- restrict drinks to set times so he has a big drink but less frequently, I've worked out that ds needs a wee 30-40 minutes after a full drink, so I know when he needs to go which means he's learnt (learning really as we still aren't fully there and he's nearly 11) at which stage he needs to go, it's linking the right feeling (which can be tricky in a child with sensory problems) with the action that needs to happen

- tell school that they must instruct him to go for a wee at set times, based on perhaps when you think would be a good time (eg after assembly, between sessions) or if there are any particular signs that indicate he needs to go, my ds gets really antsy and growly in the early stages, we still have to tell him to go for a wee at home when we see these signs, sometimes this is enough to prevent a full on meltdown

- at home you can work on him learning the feel by encouraging him to drink more, give salty snacks to encouraging drinking, and then look for patterns and see what he notices himself

- make sure school have spare pants and trousers

magso Tue 04-Mar-14 11:50:09

I would agree with zzzz and Polter, and about speaking to school. We ended up involving the school nurse (because school were not supportive) who should be able to advise staff how best to support your child. Keep spare clothes to change into, and arrange where to change (if needed - ds was allowed to use a disabled loo for changes so he had access to a sink and privacy). At 14 he still has issues with not knowing his bodily needs. We work on getting the timing right during each holiday and weekend! On the soiling front, we only really made headway when he moved onto regular daily movicol, as the pattern of with holding and constipation (and enlarged capacity that goes with this) became ingrained.
Has any one used the new stick on potty training mini pads (called Dry Like Me)? I wonder if they would be helpful for children that dribble in their undies when at school? I have bought some (the bigger night time ones since I have a teen) but not used them yet.

adelinehillman Tue 04-Mar-14 12:17:43

This is brilliant and all common sense - thank you. I have used the Dry Like Me which worked for about a week, then he started freaking anytime I went near them - doesn't want to be a baby and hides that he has pee'd or poo'd.

I'll speak to the school and ask for the school nurse too. Plus try and get into a loo schedule at home.

I am worried about the hygiene side of it too. Try and get this stage sorted before I have to deal with the sweaty grumpy teenager stage!!

Tnanks again.

zzzzz Tue 04-Mar-14 12:23:56

It seems to really help schools if they feel you are doing huge amounts of work to support them. Drop into the conversation that you are going to modify the timetable at hometo fit their schedule, in as many ways as you can. Get them to suggest times. Also suggest you meet again in a fourtnight to discuss any fine tuning. Keep a record of how stinky he is when he gets home so you can all see progress grin.

Bilberry Tue 04-Mar-14 12:42:29

It is good to hear other people's ideas here though I'm disappointed no one has a miracle cure! My ds is also toilet timed and we avoid most accidents that way (he fully empties in an accident so dry-like-me are no use). So far this hasn't been too much of a problem with school as he is still just in the 'normal' age range (4.8) but I don't think it will click anytime soon. I think this is one of several sensory issues that are beginning to emerge from the normal development age ranges.

One a related note; any ideas on how to treat urine soaked shoes?

zzzzz Tue 04-Mar-14 12:46:58

Leather or trainers?

Bilberry Tue 04-Mar-14 13:02:08

Leather sad

PolterGoose Tue 04-Mar-14 13:11:38

I've always washed ds's in the washing machine and then stick them on a radiator or on the line if it's sunny. He's always had Clark's shoes and they've survived fine.

The sensation of different pants and different trousers might make a difference, worth keeping a diary. Remember that squash and fruit juice can irritate the bladder.

zzzzz Tue 04-Mar-14 13:13:44

Rinse them. Dry them with a towel then stuff them with newspaper. Leave them to dry naturally, changeing the newspaper if very wet (it sort of sucks up the moisture). When they are dry slather them with real shoe polish leave to soak in and then buff. If you're lucky they won't crack and will be better than before.

Bilberry Tue 04-Mar-14 13:55:26

Thank you! I have had to throw out shoes before as they have smelt like a urinal!

surromummy Tue 04-Mar-14 14:01:47

reading with interest, my oldest dc (no diagnosed sen) has had this problem since six, he is now in double figures and the problem is still ongoing :-( part of the problem imo is they have only looked at the situation from a medical problem point of view and not that its possibly behaviour linked. he is not constipated, we went the movicol route but it didn't help whatsoever.

SummerRain Tue 04-Mar-14 14:15:17

Toileting issues abound in this house and unfortunately there is no magic fix but what the others have suggested is all great advice.

Ds2 withholds too and we've only just convinced him to start having a clear out each evening, he's five and has no sensation of needing to go and up til last week would refuse to try. We finally found a bribe that worked a week ago and for the first time in his life he's gone a few days workout soiling or constipation as he's getting it all out each evening. His pants are still damp often though, school are great for encouraging him and even let him use the staff toilets as he has issues with the classroom toilets but he still dribbles a lot.

My eldest is nine and supposedly nt but has always had toilet issues, she wasn't dry in the day til five and even now at nine has accidents occasionally. Medication she was on for night time wetting helped but she's run out and isn't due back at the consultant til later this month so it's backsliding again. Anti uretics didn't work for her, it was an anti spasmodic that had the best effect in her case suggesting it is a physical issue... No tricks ever worked with her, she could wet herself 2 minutes after going to the toilet.

Is your ds seeing any professionals, either medical or camhs etc who could advise you?

magso Tue 04-Mar-14 16:19:21

May I ask what anti spasmodic has worked for you Summer? Just in case it is something we haven't tried. Ds uses Diptropan, which I was told is to tone the bladder but I don't actually know (pharmacologically) how. I actually think day time wetting got worse (larger puddles)when the dose was taken up, and its months to the next appointment. He has desmopressin too (for night time), but although it works it looses its effect (on ds) if used more than occasionally so we keep it for nights away only - ie at respite. I am happy to take ideas to his GP in the mean time!
Ds is a head in the sand type too, so will not contemplate using the mini pads. He would rather smell.
As regards shoes, I soak or wash them, in lavender bath wash (the baby bath stuff). The scent seems to help with odour control. Then as ZZZZ says, dry them slowly with lots of dry newspaper changes, near a radiator or in an airing cupboard. A second pair of preferably washable shoes or trainers is needed as drying takes so long. They do dry on feet if needed!!

SummerRain Tue 04-Mar-14 16:38:49

It was ditropan that worked for us, there's another brand called cystrin which is the same medicine but bizarrely didn't work for us so it might be worth asking for a different brand. Desmopressin did nothing for dd at all.

magso Wed 05-Mar-14 08:19:10

Thank you Summer for replying. Perhaps we have tried everything already!

SummerRain Wed 05-Mar-14 08:33:20

It feels like that sometimes doesn't it!

Dd probably won't be put back on the ditropan as the docs say she can't be on it long term. But they refuse to investigate the physical cause, there's spina bifida in my family and despite me telling them repeatedly they dismiss it as my 20 week scan with her showed nothing, despite the sonographer telling me at the time the scan couldn't be 100% proof she didn't have it.

Head:wall

magso Wed 05-Mar-14 15:50:52

That's interesting Summer. Ds has been on Diptropan for several years. I will discuss with the paediatrician next time we see him. We also have NTDs in the family (hydrocephalus) and have been refused further investigation by the paediatrician. However our GP (after a particularly upsetting incident on the school bus) has at last referred for ultra sound. This is just to rule out complications from possible infection, but I feel it is something.

SummerRain Wed 05-Mar-14 15:53:40

Most likely it's just our docs being arseholes, we're in Ireland so no free nhs medications but we're on a medical card meaning I don't pay for these meds, the health board does. 90 tablets of Desmopressin costs €134 (cost price for the pharmacy) and I'd imagine ditropan is similar.

If we were paying customers no doubt she'd get a repeat prescription angry

magso Thu 06-Mar-14 17:25:32

I think the NHS pays about £2 a box (96) for 5mg Diptropan so if that is what works don't feel too guilty Summer.

youarewinning Thu 06-Mar-14 19:02:33

I have experience of this.
DS takes senna daily as his toile ting problems led to chronic constipation. He use to leak urine too. He has a card on school for toilet that he puts on a board when he needs to go and is just allowed to go. To make it inclusive and ensure it doesn't become noticeable there is 2 further toilet signs by this board - 1 for boys toilet and 1 for girls. The other children follow the same system - and because they can only go one at a time they don't tend to abuse it!

Perhaps they could use something like this but start with the teacher giving your DS the card to remind him he needs to go? So he's given it, puts it on the boat and them goes? DS also has a spares bag at school that he can access if he wants and after lots of 'training' asks for help if he needs it and makes a good attempt now at sorting out himself.

It's not perfect but we've seen improvement.

HugAndRoll Sat 08-Mar-14 12:56:57

My ds has similar issues. He's being referred to a soiling and constipation clinic, it may be worth asking for a referral
If it's possible.

BigRedDebby Sun 09-Mar-14 00:26:58

Surromummy, interestingly my dd1 was completely incontinent and was under the hospital and paediatric continence service from very young. She was referred to CAMHS when she was 8 for councelling as a last resort really. It was CAMHSS who told us after 6 mths of weekly sessions that they thought she was autistic and they referred her for an ADOS test.
I would advise everyone to get your GP to refer them to the Paediatric Continence Service for your ares. I only knew about them because my Mum was a District Nurse and had contacts. They opened alot of doors and more importantly came into the school and worked out a care plan for my dd, whilst the school were still being quite oppositional to my dd needs.

BigRedDebby Sun 09-Mar-14 00:29:24

Also worth mentioning, the Paediatric Continence service can arrange for continence aids. My daughter uses day pads and night pants. They deliver 3 monthly.

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