In dispair

[Cadair1]

Hi, new to forums but in despair. 8yr old son has been struggling with withholding for past 3yrs +. Examination & consultation by paediatrician revealed no impaction. Still under continence consultant, who also regularly examines him and says no impaction or build up of faecal mass. Son passes poos of normal consistency fairly regularly, We therefore do not think that he is constipated. He will continue to withhold every day until he can't and then soils his pants every day currently. We have good days sometimes, but seem to be on a downwards roll with every day being a soil day. As parents, we feel desperately sad for him. He's so mortified, that he reacts by being aggressive. We think that his withholding is some kind of control behaviour, but no idea how to get round that so that he moves on. We've done rewards & chards to death. All the advice out there points to encouraging your child to get into a routine of sitting on the toilet. This is definitely what works for him, but he is totally not interested in this anymore, despite the fact he knows it works. We are terrified he's going to get bullied at school, and it has such an impact on our lives as a family, and of course most importantly his own life. Any thoughts very gratefully received. Thanks.

[Cath1981]

Hi I’m so sorry to hear what you’re going through. It sounds similar to my experience with my son. He’s nearly 9 and has never used the toilet properly for poos. All the evidence suggested there was no physical issue and I was really worried about his state of mind. To cut a long story short he has been seeing a private (we weren’t getting anywhere with an NHS referral) psychotherapist for over a year now. He still isn’t 100% with the toilet but he is like a different boy in every other way. He is happier and more confident, he even got up the courage to tell a school friend about his encopresis. He is a lot more cooperative now with the toilet routine and we are definitely heading in the right direction.

I know going private isn’t always an option but from looking at other posts on here it seems it is possible to access this sort of help on the NHS we just weren’t very lucky in that way.

I also ordered ‘A boy like you’ from the Eric website for my son to read. It is about a boy who is 9 and suffers with soiling. It really helped him to realise he wasn’t the only one.

I worried about bullying too but the friend my son confided in was so kind. I really hope you and your son get the support you need. This forum is great for ideas and a morale boost x

[emmasue]

My daughter is 9 now and has been on Movicol since she was 5. Every time we try to wean her off the Movicol, she starts having accidents again. We have realised it's because she is afraid that having a poo will hurt so she tries not to. When she is on 2 sachets /day of Movicol, she can't stop it, but when we come down she has more control.

What has made a difference is that she was assessed for autism over the summer. Her older brother has Asperger's. We were concerned about auditory processing difficulties with my daughter, but the paediatrician could not refer her for an assessment until she had been assessed for autism. Well, low and behold, she does have autism! I think this is why she has always had toileting issues. She (and her brother to a lesser extent) will do anything to avoid pain. She is supposed to take a melatonin tablet before bed because she has difficulty falling asleep. Because she doesn't like swallowing tablets, we struggle to get her to take them. Because of communication difficulties through life, it hasn't been until recently that she's been able to tell us why she does things. Before, my husband and family thought that she was just being stubborn. Now I think she truly is terrified of certain things.

Now that she has an autism diagnosis, we are having difficulty finding somewhere that will assess her for auditory processing disorder. However, at least now we can address her withholding through an autistic perspective. Hopefully we can find a way of helping her through this.

Hope you get some help for your son soon.

[Lmd12 in reply to emmasue]

You can get melatonin in liquid form doctors will tell you it costs more but with your daughters diagnosisvwith autism,they should give it.justcquote reasonable adjustments to them x

[emmasue in reply to Lmd12]

Thanks. I didn't know you could get it in liquid form. Will have to ask the paediatrician next time we see her. At the moment, we break the tablet in half or quarters. She was struggling with both. She used to take it in a spoonful of chocolate spread, but she won't do that any more, she just spits it out. So crushing it in yoghurt or something wouldn't help either as she doesn't like the taste.

[Lmd12 in reply to emmasue]

They may resist because it costs more but insist .goid luck x

[Lmd12]

I don't think my sons is a medical cause but he has certainly lost sensation from his bowel being so full that it has gone baggy.now it's trying to give the bowel time to heal ant that can only be achieved by taking regular meds.my son refused to take movicol so we swapped to lactulose.and twiddled with the time he has dulcosate,has it straight after tea.its so frustrating.prople do not realise how something like this rules your whole family,and every time we go away we up skittle routine .we are up and down with progress.better with soiling it's the wetting that we can't seem to control

[HollyGriffo]

Hi, big hugs! Would he see a cognitive behavioural therapist? Maybe get a referal through CAMs? Sounds a bit odd but have you tried osteopathy? Or cranial sacro treatment? Long shot but might be worth a try? All a bit costly, bank of mum and dad helped us(my daughters condition is different from your sons), ERIC maybe able to advise about funding if thats additional issue. Hope you find some support through here.

[Frustratedmum1]

Has he got an association with pooing ie has it caused him pain when he has gone. Is he scared. The aggression side of things is apparently normal it is known as denial behaviour. I can sympathise with this as we have been their. The best advice I was told was just to reward them for sitting on the toilet and not for actually goung. I Tried stickers tools etc as rewards didn't help. I resorted in giving a couple smaries every time he sat on the toilet this seemed to work for us. Was also told put toys books bubbles in the toilet to try and get them to relax and take their mind of it. Even resorted to giving him his tablet to keep him on the toilet for 10 mins. When my son was getting aggressive I made him count to 10 with me to try and calm him down. The other thing I found the more frustrated and cross I got it seemed to make things worse. Another thing i have done is sat in the toilet with him and just chatted. Hope this gives you a few ideas

[Robinia]

Wow I feel your pain and frustration.

My son has just sat on the toilet twice today and I am ecstatic!!!!

I have learned that the most important thing is the hardest...........................patience.

My son is 9 and half and in nappies with no bowel control after very severe impaction. He totally gave up on sitting on the toilet and because his behaviour became so extreme (violent etc) and the continence nurse said let him do it when he’s ready I gave up trying to get him on the loo. That was months ago.

Over the Easter holidays I managed to coax him on over a period of days and then managed to get him to stick with going on in the morning. Today he agreed to going on this evening as well which really is a major break through and I’m hoping he will continue with this from now on. When he’s on there he has a squatty potty type step and he plays Fortnite on my phone.

No one can understand the feelings that are provoked unless they have been through it.

Thank god for this forum as it’s been the thing that has helped me when I have felt like I have nowhere to turn.

I can tell you categorically that you know your child best, when he’s in a good state of mind try coaxing him to try sitting on the loo with a really good distraction like playing a special game (like Fortnite). Doing a poo is unimportant. It’s the routine of daily sitting that’s the foundation.

Also I don’t comment or look and give him privacy when he’s in there. My son has a shower straight after. I think the privacy element is really important. I once congratulated him coz he’d managed to do a little tiny bit in the loo and he went completely mental. I now understand the whole issue is extremely uncomfortable and shameful for him so the less attention I pay to it the better.

I feel so sorry for these kids as something so natural becomes the source of so much pain both physical and emotional.

I suspect my son will not do a poo on the loo for months possibly but I will remain as calm as possible and try to stick to the daily sitting routine.

I’m also adjusting movicol to keep it soft but not runny (he’s just been constipated again but managed to clear it by upping movicol and drinks).

Please be assured things will get better. And there are others here who really do understand.

All the best xxxx