My 4yr old is still in nappies.. Support please

[MamaLlama123]

My 4yr old boy is still fully in nappies and should be starting Reception this Sept. Im quite anxious re this following comments on another thread

He has had chronic constipation since weaning which was not medically managed well. Since age 2 - he attended 5days per week in nursery. At aged 3 - nursery advised me he showed no signs/ anwareness and was not ready to potty training. At this time - he was having 5+ stools per day although appeared otherwise comfortable. A GP assessed him as having constipation and prescribed him laxido to be given as needed.

It has come to light now that he actually had retained stool despite the laxido. He was advised disimpaction doses x8 laxido per day then senna added

We were referred to Hospital who did bloods - all normal. He now has 30mg senna and GPs recently advised to reduce the laxido to 2-4 maintenance dose sachets per day and to not stop this

The GPs advise he is now outside their remit. He has been referred and accepted to a children’s continence team - the waiting list is 18weeks.

The stool comes out of him continuously - Meaning approx 1-2hrly nappy changes and there would be stool in every nappy. They vary in consistency from firm to watery.

He is suspected to have ASD and is delayed generally in other areas especially communication. The Hospital Doctor indicated his bowel may be stretched by his constipation and the brain- bowel signals may be affected, associated with his autism

I am quite concerned that he will be laughed at/ bullied and also now that teachers are not going to be able to support him and change his nappies - following reading a recent thread

Is potty training him feasible by September? He still doesn’t have much awareness - and there is stool/ soiling in his nappy hourly

Would appreciate support from anyone who have been in this situation

Has your son been tested for Coeliac? I could have written your post 2 years ago !

When is he five. My daughter was exactly the same and we actually deferred her because of this, so she started school at age five rather than 4

what really helped us was cutting out laxido and moving to a stimulant (sodium picosulphate) this triggered the feeling of needing to go and stopped the 10 tiny poos a day

If he has ASD even suspected and is delayed in other areas this is not unusual for ASD children.

this does not sound like a situation where potty training is likely to be successful,

are you in contact with the school re the delay and suspected ASD? Best to make them aware.

yes he has been investigated for underlying disease - Chrons/ coeliac etc. His blood/ stool tests were normal

OP it sounds like he has very little control over his bowels, he will need to be able to hold it for a couple of minutes to get to the toilet and it sounds like he can’t do that? If he can’t then it’s probably not feasible.

Is there an option to defer his school start? Have you spoken to the school/has there been any transition sessions for you to mention this or is all that in September?

I agree that him starting reception in Sept 27 instead would be a good idea if nursery can keep him for another year. We did this with my autistic child.
if you’re on Facebook I would join movicol mummies group.
I also agree that reducing the Laxido right down if you’re sure he’s cleared his bowel fully would help. You want him passing a type 5 stool on the Bristol stool chart while he’s healing.

did he reach stools that were just brown rusty looking water with no lumps of stool? Just undigested food? If not he probably still has stool stuck.
potty training is very unlikely to work yet. His bowel needs to shrink back to size.
this is a medical condition so school must support him with changing. They can apply for funding from the LA if necessary. As he’s delayed in other areas you could also apply for an EHCP needs assessment yourself as that would usually have funding attached for support too.

He is summer born and he could be deferred until age 5 however we ideally need him in school.

I feel we are just been left with no guidance. The GP doesnt seem to have much knowledge beyond basic constipation and his issues seem to not be easily resolved by the first line treatments

I really want him potty training asap. Is this unrealistic?

And if Not realistic - what timeframes would be normal for an ASD child. Can he be trained in a year before age 5 if we did defer him

I’m just very keen to be proactive about resolving this

And I’m anxious of other people’s judgement that it’s lazy parenting

@MamaLlama123 as OPs have said, the combination of his history of constipation and possible ASD will be significant barriers to toilet training.
As far as starting school is concerned, you could delay if you would like him to have an extra year of nursery instead of school. You might then have a better picture of his medical and developmental needs and you could request an EHCNA during that year to prepare for support needed at school.
If continence is still a problem by then, technically the school/local authority would need to make individual arrangements to change him if he goes to a mainstream school. However, thinking about his dignity you may prefer for you or a family member to go in to do this rather than a member of school staff.

Defer

Thank you for the advice

He actually never achieved “brown rusty water” despite the maximum 8 sachets per day for 10weeks. I watched the eric website and don’t believe he achieved the result described in these videos

I was very concerned re the length of time he was on this 8 sachets dose m. Eventually the GP decided to reduce to 2-4 sachets following palpating his abdomen and clinically assessing him to be disimpacted

I asked for imaging/ x ray to confirm however she said that X-rays are quite high radiation risk and that they would not do on this basis

When would you know his bowel has shrunk back to size?

I recommend the book sneaky poo, you can download it online and print it out and colour it in together. The idea is to talk about the problem (sneaky poo) as something that's separate from Harry, to make it clear it's not his fault in any way. His bowel will be big from the impaction and it takes a while to shrink to size again (as long as he was constipated for). Definitely potty train him, but don't be cross about any accidents, he can't feel the sensation of pooing as well as others because of the big bowel. A first step is getting a big potty and practicing sitting for 10 minutes about 20 mins after meals. Use an iPad or TV if you have to get him to sit. Reward anything in the potty. Don't get cross with accidents. Make sure he drinks lots of water. Remember the big bowel may have caused less room for bladder to grow so wee accidents also likely, don't get cross just practice sitting in the potty. Give rewards for sending the wee to weeland and the poo to Pooland (read the book on sneaky poo). You can absolutely do this, it's just a full time job. He can start school, send in a bag with spare clothes, buy extra uniform, wipes. I also recommend a watch with an alarm, you can set it for 3 times a day and teach him to sit on the loo when it goes off. That way, even if he can't feel the sensation of needing a wee/poo, there's a good chance it will end up in the loo any way as he will be regularly visiting the loo. Practice him cleaning himself up with wipes after an accident and changing his own trousers. Just give loads of praise for any small steps he can take. Find ways to boost his confidence in other areas, as toileting accidents is really hard on your confidence.

Why do you need him in school this year? If he’s summer born, ASD and with a medical condition that means he is unlikely to toilet train and needs to be changed every 1-2 hours then it’s probably best to defer him. It’s not going to be easy for the school to be able to change him that frequently. They have a class of up to 30 children and there’s likely others with different needs too. Surely it would be better to have this year to try and sort it then he can start next year?

Summer born, not toilet trained. OP your son’s situation is what the deferring system was designed to help. Practically there just might not be the support in school for a member of staff to change him every 2 hours and they may suggest a parent to come in and change him at least initially.

My eldest is ASD and wasnt till he started school he took an interest in wanting to use the toilet. The school were really helpful and helping him get started. With in weeks I started send him into school in pants and he barely had any accidents. Sometimes it just takes seeing other kids his age use the toilet to make them want too. Nursey there's still little ones in nappies which is why it's harder to train speically those with ASD as it tends to take longer with them

I’m a teacher and commented on a recent potty training thread. There is a big difference in situations like yours and parents who feel their child isn’t ready/doesn’t want to give up nappies and they don’t want risk upsetting their child so don’t try. There sounds like there is a lot going on for your boy at the moment, dint stress yourself by putting unrealistic expectations onto you or him.

I know the thread you are referring to and I don’t think the situations are in any way comparable. Is the school aware of your boy’s needs?

Because The only way I can manage to work is by working night shifts and then looking after him afterwards. I can’t afford to not work. And it’s very tiring.

We’ve been there.

He won’t be reliably potty trained by September even if he smashed it tomorrow. We were told by multiple specialists that it’d take twice the amount of time that he’d been constipated for his bowel to shrink back down; and accidents will happen for that long.

Ours have mostly stopped, but they’re manageable now - but we achieved disimpaction last September and he’d only been constipated for six months.

He’s summer born and has a medical issue. I’d defer, absolutely. This is exactly what the mechanism is there for. There will likely be systems for dealing with constipation, depending on the school - ours is a lovely school but the system relies on us going to change him, but my son is sadly not summer born! - but like you’ve said, the risk of embarrassment or teasing is high and that’s not going to help the constipation.

It’s a tough ride, and it doesn’t sound like you’re approaching the end yet if you’ve not achieved rusty tea.

Very helpful! i’ll order this book

Deferring is of course an option but school cannot refuse to accommodate him due to not being potty trained - that would be disability discrimination. Have a conversation with the school as soon is feasible about an intimate care plan. They shouldn’t be asking you to come into change him but a plan does need to be in place. Loads of typical, potty trained kids have accidents in reception as it’s a big change so try not to worry too much about what other kids will think.

I would defer him but also get the ball rolling immediately for an EHCP. Some of the worst advice I ever had was just before Reception that DC didn't need an EHCP.

GPs are not often good on this. Get to the child continence team if you can, ours were great. Also if your DS is delayed in other areas see if you can get him into an SEN nursery for a year before school if you do defer him - they are often a well-kept secret and they will have loads of experience supporting in this area.

See if you have a SEND health visitor in your area. Again ours were fantastic and referred us into early years SEN help and they were particularly good on toileting.

As a teacher, would you come across other children with similar issues to this? or is the situation unusual. Thanks

Great if this works for you @LittlePetitePsychopath but the school shouldn’t be requiring you to come in to change your DC - they need to make reasonable adjustments for disability and asking a parent to come in isn’t reasonable.

Sorry but no you will not get him potty trained in the next 5 weeks.

childcare professional of over 20 years here and I've had over a year of almost this with a 3-4 year old autistic boy.

he took to potty training for wee's pretty quickly, but because of the whole
cycle of constipation/impaction/laxatives he only came out of nappies at 4 due to the overflow, and it's taken a further 6 months of getting his body into a proper daily poop schedule.

Trying to do potty training while he's about to start school is all wrong. Send his school emails now about it.

Just so you know, school will expect you to go in and change him when needed.

well currently he could be changed 1/2 hrly - hourly and they would be ongoing stool in the nappy regardless

would they allow me to sit in the classroom with him? as it wouldn’t make sense to continuously walk to/ from house to school every 1/2 hour

And I haven’t been leaving potty training deliberately until school age. I have been trying to achieve a normal stool pattern before potty training - However this has still not been achieved and we remain sat on NHS waiting lists for a continence team. Health visitors and GPs are clueless - and advising he is beyond their scope of knowledge

Could you suggest what could be done differently in order to avoid having done it all wrong?