Starting school in nappies

[SarahB26]

My 3yr old son (4 at the end of the month) is still in nappies and I am very conscious that he is due to starts reception in September. Wondering if anyone has any advise on how to manage him still being in nappies when starting? He’s had ongoing constipation issues since he was a baby and shows no interest in potty training at all. He ended up in hospital recently for impaction and had Klen Prep. Since then he’s been on sodium picasulphate daily. He was on Movicol for over 2 years but won’t tolerate it in anything any more. He doesn’t communicate when he needs to go or if he has gone wee or poo so is completely reliant on nappies still. We have a referral to the specialist again in June and will discuss it all further then but wondering if others had experience in similar situations. The meds he is on now seem to give him stomach ache a lot and when he does poo it is always liquid, very foul and very unpredictable with no control to it. There is no pattern to his bowl movements but it is impacting on his day to day life and participation in activities which is upsetting for him and me.

[Robinia]

Sounds like continence nurse/school nurse might be helpful in getting School on board. Poor boy no wonder he’s not ready to toilet train, his bowel sounds like it’s been through lots. My son is 9.5yrs and has been in nappies prescribed by continence service since January 2018, he wears them all day and all night following severely impacted bowel, he changes them morning and evening (so only twice a day) and there’s always poo in them, he uses cream every change.

So pls don’t feel alone. My son copes amazingly well and knows he will be out of them eventually, it’s just taking time for his bowel to heal. We use movicol to try to manage the constipation which is variable. The picosulphate wrecked his stomach and caused gastritis so he’s not on any irritants, only movicol (which he hates taking) I now cuddle him while he drinks it every evening which seems to help (and stops him secretly pouring it away) he has the chocolate movicol which he does seem to prefer. Good luck

[SarahB26 in reply to Robinia]

He’s had Movicol for so long (only adult plain one) that he now point blank refuses to take it, he will refuse to drink ANYTHING if he thinks we are trying to hide it in anything or put it in drinks The sodium one is definitely irritating him, although he will take it, it’s causing other issues for him, but even a day without it is enough for him to stop pooing again.

I don’t think the school has an incontinence nurse, but I will have a look into it, it’s a relative small infant and Nursery school but I’m already getting conflicted information from them. So far they have refused to change him in the Nursery and will phone me to go in and deal with it and have said it’s tbe same when he starts school (this is difficult when I’m at work) But tbe council website seems to imply this is against their own policies to leave him in soiled or wet nappy. I can’t see him being out of nappies by September so I need to look into this further now.

Thank you for the advice, it is helpful to know we are not alone in all this

[Alicass]

I'd definitely get the School Nurse involved and the Health Visitors. They look after young children until they're 5.

Have you tried the chocolate Movicol in orange juice?

I empathise with you both completely. My son started school in September 2016 but not in nappies. He was in pants but every day at pick up we'd bring home a bag of soiled or wet clothes. My heart would sink every night.I really felt like we were getting nowhere.

Have you tried sitting your son on the toilet 20 minutes after every meal for 5 minutes? Put his feet on a stool and blow balloons/bubbles. We've been doing this since February 2017 and it's worked amazingly well with our 6 year old. The Play Therapist told us about it whilst my youngest was in hospital in February 2017. He only sits on the toilet in the morning and if he poos we don't sit him on the toilet in the evening. I'm sure this has helped his bladder and bowel to start working properly.

I empathise with all families who have toileting troubles. We've been having issues for 4 years and even though there's light at the end of the tunnel, I look back on what's been a very stressful, emotional and difficult road and it still brings a tear to my eye. People judging me as a bad mum as they think I give my son lots of rubbish to eat which I don't. Others thinking he's just lazy which we did for a long time until we were referred to a Pediatrician in March 2016. One GP even said when I told her the issue "some men are still wet when they join the army" - NOT helpful at all and I did make a complaint.

Don't let the school get you down. Your son has a right to an education and to be happy at school. If he has a medical condition it's not his fault.

Xx

[SarahB26 in reply to Alicass]

Thank you. We have been told about He bubbles and blowing, but at the moment he won’t even go into the toilet let alone sit on it. It feels such a constant struggle and it’s so hard seeing it effecting him. He had his first play date today and it was horrible having to speak to the mum in advance and explain his situation (luckily she was great about it and even changed him for me!)

Our HV was useless, we had been back and forth to the doctors and HV multiple times over the previous 2 years, constantly to be fobbed off and told it was just a phase. The HV told us to decorate the toilet and wait, which wasn’t helpful, then had never been in contact since and hasn’t replied to any of my communications, even with him being admitted to hospital. The doctors told us to sit him on the toilet everyday and it would ‘just happen’, again, not a helpful suggestion.

We’ve had lots of people suggesting he is just lazy and the like too. It’s all so difficult.

[Robinia]

Argh, why are some people so unhelpful??? I find it vari

[Alicass]

Have you been referred to a Pediatrician?

My health visitors were useless too. They sent me on a potty training course of all things. It's not like I was new to potty training as I have an older child too. I've never contacted them since.

Have you tried to contact the ERIC helpline for advice? Does he have a fear of the toilet?

I found that nobody seemed interested. The only reason why my youngest went into hospital is because I threatened to complain about the Paediatrician who didn't seem to really care about our situation.

I'd contact your School Nurse before he goes to school. They can help the school out and negotiate with the school if they're being difficult.

[Robinia]

Sorry, presssed wrong button in my disgust at people making unhelpful comments!! 😂 the continence nurse I spoke to the other day said my son may find it hard to toilet train before he has experienced some time pain free which made total sense. At least on this forum we all understand what helps. Time, patience, understanding, removing pressure, daily habits, helpful health professionals, understanding schools....

Continence service is usually accessed through referral from GP or paediatrician. Also in our area you can self refer to school nurse. Like anything, some are more helpful than others...

I don’t think School can say they can’t change him-worth checking this out.

Keep the faith all you fighters for the rights of your children to experience dignity and stress free lives, I think we are all doing an amazing job 😁

For anyone who is currently suffering my son’s behaviour was so bad couple months ago school nurse did safeguarding referral and I can honestly say things have gotten so much better since then and yesterday he drew me a picture for my birthday of me as the mummy bird and him and his sis as my baby chicks 🐤, made me cry!! He’s still swearing 🤬 and tricky to manage and complaining of sickness, pain etc but at least I’m not getting hit and kicked every day 😁😁😁

[SarahB26]

It is so reassuring to know there are others in the same situations and we are not the only ones. We were admitted to the hospital via an out of hours doctor who I think refereed us becuae she didn’t know how else to get rid of me lol! We saw the paediatrics team there who administered the klen prep because the impaction was so bad. It took several days of klen prep to get a result and we had to stop it early in the end as he got fluid overload from the IVs and his bloods went all funny. We’ve got a referral back to the same specialist to discuss his progress and future treatment, but that’s not till 11th June so still a way to wait.

I’ve no experience of dealing with a school nurse so not sure how to find out who they are but will look into it. I’ve an elder daughter so Im not new to potty training either, but this is so much more than him choosing not to toilet.

[Chocolate-chicken in reply to SarahB26]

Speak to the school receptionist about it. The school nurse will likely be a local team that deal with a number of schools so they will probably give you the phone number. In our situation they havent been massively helpful, but I find that the more people you get involved the more it helps your cause eventually - "I've seen ALL these people, you MUST help me!" I've found collecting paper evidence of visits and contact details that I can pass on to other agencies has really helped...

[Robinia]

Thinking of you, you’re doing brilliant, it’s a big thing to go through and we all understand on here xxxx

[Misty10]

Have u got senco at your school. My lg due to start this year still in nappies. I'm having a meeting set up beforehand regarding my LG chronic constipation and complex bowel condition.i have to set up a health care plan also have contenience nurses backing and hv backing me up.im am my wits end and am dreading it. As she has had no toilet training she lost all her feelings down below.