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

So DS was in nappies at that age, diagnosed with constipation, she's for it and within a few MONTHS started to get sensations and then trained fairly quickly. At 11 I still have to tell him sometimes to go pee, cos it's like his body recognises it but his brain doesn't. He has autism.

If he's pooing this much, it sounds like the constipation isn't resolved properly. Have you spoken to abyoen at the charity Eric? When was the last time he was seen and his abdomen palpated or xrayed? What's his diet like? How long since the constipation was "fixed"?

Mine didn't.

They were aware from nursery age that he had issues, not jist the bowels but behind developmentallly. Their only request, and what I'd focus on, is getting him into pull ups. At 4 he's large to go into a changing table, and it'll probably be in the nursery so quite othering. However if he can take down his trousers (,elasticated waistband), take off his pull up, try to wipe, put a pull up on, put his trousers in, he can do it more privs9. Obv school would still ll need to support but it's less than nappies.

A school that demands you come in every hour to change a nappy is not likely one that will provide Al l the extra support for his additional needs. I'd start asking about whatever the EHCP thing is now. ISP?

I agree with the people recommending that you apply for an EHCP, you don't need to wait for him to start school, you can start this yourself now. Take a look on your local IPSEA and SENDIASS pages for support on this.

I completely understand your reasoning for not wanting to defer. My daughter is late summer born and has ASD and we also chose not to defer her. She has just finished her first year at school and absolutely loves it there. She was toilet trained not long before she started last September, has had a few wee incidents at school, and even now cuts it fine to get to the toilet as she struggles to read her internal signals that she needs to go due to interoception issues.

On a practical level, if you haven't already spoken to the teacher and SENCO, I would make this a priority in September and work with them to understand how they can support him with his personal care needs in school. It's frustrating that the continence team have such a long wait time, but if you have contact details for them maybe reach out regularly to see if they have any cancellations that you could take. I would personally wait on trying to potty train him I until you have spoken to them, as it sounds like it would be challenging at the moment due to the frequency and consistency of the stools, but you could always reach out to ERIC via their helpline while you wait and see if they can also offer any support.

It is still EHCPs. The law has not changed and will not change for a long time yet.