Need help (long post - sorry!) - Dr appt tomorrow to discuss DS's soiling issues (aged 4.3)

[banyan]

DS is 4.3yo. I have posted on here on and off (under different names) about the problems we have had since we toilet trained him just before he turned 3.

History: toilet trained by 2.11, although had taken 2 months to get poos (toddler diarrhea). Fine until aged 3.6, started soiling all the time (affected by new preschool/home routine I think) but got back on track. Bad again in November and again at Christmas. Realised he was constipated and soiling was overflow. Put on lactulose over Christmas, really worked on fluid intake as he drank hardly anything. Ok in early Jan but then terrible again in late Jan, but not constipation - more a control/not being bothered psychological thing. HV gave lots of advice on how to deal with it, and in Feb finally found a reward system that worked and then a very light punishment/reward system (basically he got a train for 10 poos on toilet, this was then taken away for accident and handed back on success, all sorted within 3 weeks) and has been fine until the last 2 weeks. He has not had one single poo on the toilet - soiling in his pants every time. Sometimes says it hurts, he's withholding (pushing up with his hands when sat on toilet), poo sometimes normal, sometimes hard, sometimes diarrhea, sometimes says he just wanted to play rather than go to the loo. He has now gone from being completely in charge to not even telling us when he has done a poo and waiting to be led to the toilet and then not doing anything unless I give him specific instructions - completely handed all responsibility for pooing back to me. He cleans himself up without complaint, tidies away the soiled pants etc. This doesn't bother him - it seems in his head that it's the price he pays for not disturbing his playing to go to the loo and as far as he is concerned it seems to be a price worth paying! This is the longest it has been without any success since last Sept (even when bad in Nov/Jan we would have the odd success)

My HV who has been very helpful is away so I have no immediate support. I have managed to get a dr's appt for tomorrow. I'm at the stage now where I don't think the HV can help - she has acknowledged that he is one of the trickier cases she has seen - and there is a mix of both physical stuff (tendency to constipation, I think quite a sensitive gut given the big variations in how his poo is and prior toddler diarrhea, possible intolerances I think incl family history of coeliac) and psychological stuff (he has often told me he likes to poo in his pants so he can carry on playing, soiling happens as response to changes to routine, he refuses to take responsibility, reward schemes don't really work well with him).

He starts school in Sept. We need to get this sorted for his sake by then.

Sorry for long post, I just wanted to give the background to show this is a prolonged yet at the same time intermittent problem and has both physical and psychological elements. What I really need help with is what do I ask for from the doctor. I am going without DS so that I can be very open about it all.

In an ideal world, I would want:
a) proper check for constipation and what is going on rather than just a prescription and wait and see
b) referral to check intolerances/sensitive gut etc
b) help from a psychologist on how to get him back on track and keep him on track

Is it sensible to ask for/expect all this in one go? Is there anything else I should ask for or expect? Any other thoughts?

I think it would be helpful for you to take a copy of this post, so you can tell the GP in detail about everything that has happened before. Go through it slowly and thoroughly.

Also take the list of things you want to happen - and yes, I would ask for it all in one go.

If the GP doesn't spontaneously refer you to specialists - ask! We did this when our ex-nanny told us that DS (then 10 months) was autistic. I said I wanted a referral to a paediatrician and we were given one no questions asked.

Good luck with getting things sorted. It sounds soul destroying and you should be proud of yourself for handling things as well as you have.

Thank you :) I will print this off and probably add a few extra bits too!

It is soul destroying but at least as much for DS as me - I think he gets into a bad patch and then loses all confidence in himself. And then it is harder each time to think of a way out of it because he doesn't want to try what we did before :(

Bumping in case anyone else has some advice

could the poor thing have an anal fissure? To me it makes sense with the symptoms you are describing with the pushing with his hands etc and saying it hurts... he'd always withhold in that case, until he just couldn't any more... hence the soiling. And that would mean that sometimes he'd get constipated but not always.

DD is 6.5 and under a community paediatrician for her constipation so at the very least ask for a referral for that, however DD has been like this for nearly 3 years so I am putting feelers out for further help, her diet is poorish through fusiness and dislike of textures which doesn't help and she also refuses to poo on the loo. She has also been on Senakot for over two years and is now on a weekend dose of a stronger laxative.

Good luck and don't be fobbed off.

By the way the school has been brillinat with her, she does have accidents fairly regularly, especially if a dose or the timing has changed, so the TA who deals with her will be getting a big present at the end of this term. have a word with his new teacher and head and explain the situation to them.

I would start keeping a food diary if you haven't done already as there may be a food group that is causing the poos.

DD has horrific diarea (sp) when she has dairy and soya but when she was younger it used to make her badly constipated.

Thank you all. This is giving me lots of things to explore. I've felt at a loss the past week waiting for this appt and I now feel like I have a bit more practical stuff to explore and think about and discuss with the doctor.

I do feel intolerance is a big part of the issue so will definitely do a food diary. He has always had foul smelling, fairly sloppy poos but was diagnosed as toddler diarrhea by hospital (i went because i was worried about coeliac given it's in the family) and said it would get better with toilet training but it didn't. Very variable poo so clearly some sort of dietary link. It's only now with 21mo DD that I realise what normal child poos are like (like adults basically!) and realise how not normal his were/are.

He did a poo in the bath tonight which he hasn't done since he was toilet trained :(. He is so worked up about it at the moment :( The problem is that I have learned to remain completely neutral as the best way to manage it (neither console him nor shout, just manage it neutrally) but it takes sooo much effort and then occasionally a glimmer of fristration shows and it just throws him completely. He only trusts me to help him clean up - doesn't want anyone else, not even DH who is he is v close to, near him - and if I show any frustration he tried to hide the poos from me. Basically he doesn't want anyone to know about it so can only bear for me to be involved. So even if it is a physical cause, there is a huge amount of psychological stuff to work through to get his confidence back.

How did it go today banyan?

Just back from the GP. It went well. I'm really glad I went without DS as I was able to be really open (and graphic with my descriptions of his poo!) in my discussion without worrying about what he was thinking of it all! It was so cathartic to offload although I was in there for about 30 minutes so the poor people after me would be very, very delayed

Her view, which DH and I concur with really, although I didn't tell her that until after she said it, is that there is probably something physical going on, maybe an intolerance, but that it is mainly an emotional/psychological thing. Plan of action is:

1. referral to community paediatric team. Gastro referral not appropriate as first stop as too physically focused and probably not his main issue, can get referral to them later if felt necessary. Paed psych understaffed and will probably not prioritise 4yo with soiling issues so will be a long wait. Therefore community paed best to get quick help and get more holistic view, and get referreals through them if needed. They will also help with a plan for school if needed.

2. lactulose for a week to make sure there is no lingering constipation but no long term use of laxatives yet

3. suggested removing dairy from his diet as this is likely to be the main problem given his symptoms if there is a physical cause. Suggested 6 weeks although likely to know much sooner if it is having an effect. Can wait to talk to community team/meet with dietician but can start it now if I feel confident. Need to think through the logistics of this and talk with nursery. Any tips welcome!

4. keep a diary with aid of nursery so that I have a really good understanding of what is going on and any triggers when I meet with paed team

5. meet with HV once she's back on holiday and get her ongoing support. If she has further referral suggestions, GP will follow up on them too

6. a few new suggestions for dealing with him which I will try to incorporate.

7. main issue is support for me and DH to get a plan together for trying to get him out of this cycle and put together a plan to pre-empt any backwards steps when he starts school (assuming we get him back on track now!). So to go back to them whenever, call HV, meet with comm paed team and generally ask for whatever I feel we need.

There was other stuff too, about withholding and getting him to take responsibility and getting him to allow DH to be involved. A good mix of emotional support and practical advice I thought. Fingers crossed we can move on from this nadir quite quickly, although I imagine it is going to be a fairly long haul until we all feel he is over this for good (I've thought we were before :().

So glad it went well.

It sounds like you have some really positive steps to take, so fingers crossed things start to improve from here on in

www.eric.org.uk/ has some good advice and they have a phone line as well, worth looking at.