Just hit a brick wall of what to do now - faeces related

[makingmiracles]

we have a soiling problem, has been ongoing now almost 6yrs. Started after restraint incidents at school. have been managing it best I can but lately its getting worse.
its not a whole poo iyswim, its more severe skidmarks/poo ending up up his back/down his legs. the problem now is (I think not helped by the warmish weather) he is now starting to get a (crusty)rash down there, where everything is getting sweaty(and soiled) and irrating his skin.
he has no diagnosed sen although have been under consultant pead for years.
he seems not bothered too much. all the continence service says is give him more than 8 movical daily, which is something we are at loggerheads with at present because how do you give a adult sized child movical if they wont drink the drink with it in?! to give you a sense, he fits the criteria well for pda and odd, so you can imagen how hard the incontinence nurse request was!
Im worried as he moves up to secondary this year. im worried that other kids will smell him(often its very noticeable, we can often smell it when he gets in the car) or see poo up his back or see the pretty big rash between his legs and bully him im really just hitting a brick wall with it now and not sure what other approaches to help him will work.

hoping someone else can offer advice or share their story

[Bumblebugg]

Hi, I feel for you as I've recently been through something similar with my son who is 5. Has anyone mentioned encopresis to you? If not, look it up as it sounds similar to my son. We used suppositories for him and within 2 months he was fixed. I found movicol useless too as he refused to drink it and it left him in a lot of pain with tummy cramps. no more accidents and using the toilet property. hope this helps.

[makingmiracles]

I feel theres more to it as its not consistent. in my unqualified opinion I think its linked with his behaviour- ive been thinking for yrs hes top end spectrum /pda- which after some googling it seems soiling/smearing quite common in children with pda. however am hitting a brick wall with consultant who states he cannot be on spectrum as he makes eye contact going to attempt dla application as im literally nr the end of my tether...mainly soiling wise, and the behaviour and disregard that goes with the soiling, but behaviour too.

anyone had experience of getting it awarded for behaviour/soiling with no diagnosis?

The jobcentre has been telling me to apply for yrs but after they suggested it I rang the cab and they laughed in my face and said they wouldn't help fill in an application as without a diagnosis its almost 100% given it wont be awarded, so I never applied. This time im going in all guns blazing, they will bloody help me fill it in, even if I have to travel to another cab in another area! read through cerebra and other dla notes and will take those with me. is there particular people at the cab who have experience with child dla forms or will I just get any advisor?

[CharlesRyder]

How do you feel dla would help the situation?

Is your DS at a Special School? How have the school been helping you with his behaviour and soiling- you mention that he has been restrained so I assume there are some significant behavioural issues at school. If he's in MS have they applied for a statement (in the past) or now EHCP?

Have you had referral to CAMHS? EP? Your Pead doesn't sound great, has your school pushed for the involvement of other professionals?

Sorry- so many questions. It just sounds from your OP that you have not had enough help with your DS's situation and I was wondering what avenues had already been explored.

[makingmiracles]

Thanks for replying charlesryder
No hes in ms school, the restraints happened during the 3 yrs he was at infants, since moving to primary hes had much better teaching approaches and no restraint (but I fear the restraints have damaged him emotionally ) The school have been no help in regards to the soiling, they have no idea how to handle it as much as me, as for behaviour they've put things in place to minimise the impact of it on his education- for example often using small group work or 1-2-1, getting him to engage in practical projects like fixing a motorbike and getting him to help the caretaker with tasks at lunchtimes (a time he particularly struggles with his behaviour) school hasn't been without its problems entirely though, he had another exclusion last year for fracturing another childs arm and on another occasion has disappeared out of school, being returned by police later that afternoon. hes on the sen register at school but no IEP/school action or statement or anything, they say he doesn't meet the criteria.

we saw camhs in the past (5yrs ago?)who said yes hes challenging, but your managing him well, case dismissed! never managed to get another referral. ed psych, yes saw them a lot at infants but not since being at primary- they were due to come out to him before school broke up for the hols but it didn't happen due to her being ill and off work so guessing that's off the cards now too as hes moving up to secondary now. school haven't pushed for anything, they put me in touch with get-set, who came and worked with him for 6 weeks on a 1-2-1 basis on anger management but again after that was completed we were signed off from that. the anger management has made no difference.

Paed said at last appointment she felt he has sensory processing difficulties and would refer to OT for assessment, just had a letter come through the past few days from OT to paed saying they wont accept the referral due to lack of info from her on how its impacting his life.
next pead apt now not till dec 15/jan 16, incontinence appt in September- after speaking to ERIC on the phone I plan to ask them to look at his anus as eric said a professional should be able to see whether his anal muscles are over stretched or not (which is what they are putting the soiling down to).

Just feel downtrodden with it all and losing fight. Now have had to move his sibling out of his shared room due to violence towards him and move sibling in with his little sister, not ideal but has decreased conflict.

Just feel there are so many issues and feel like im being fobbed off all the time, behaviour, soiling, weight/eating-Im sure he has a over-eating disorder ( eats v v fast, never feels full, constantly stealing food or getting into physical wrestles with me over food-this is getting worse but again haven't been referred for any further help) although hes only just about to start secondary he is a big boy and weighs over 10st and its becoming increasingly difficult to block him/restrain him if hes arguing over food or fighting with his sibling.

The soiling has no rhyme or reason, most days he does it multiple times a day, some days he doesn't at all, he has no awareness of it (so he says) he doesn't seem embarrassed about it or ashamed or wanting to make it stop. he doesn't care about how he smells and will fight about having a wash every day. He used to smear it on stuff in the past but doesn't nowadays, he often will have faeces round his fingernails indicating hes had his hands down his pants. im just at the end of my tether with it. I do what I can, try not to appear angry(although im seething inside the longer it goes on) I make him wash his garments and bag them up, then make him wash the bath out with antibac.

I feel like low rate dla would help the situation slightly due to the amount of money im spending on buying new pants all the time and the increased amount of washing that comes hand in hand with the soiling. maybe it wont, maybe it wont be worth the time to do, I don't know, im just venting really......

[ommmward]

Is he happy to go to school? Is it the best environment for him?

I recognise a lot of what you are writing - especially the violence towards siblings, struggles over food - from good friends who have now taken their children out of school in order to recover. The behaviours are easing off massively now they are home educated. As with you, it was (in the school's eyes) definitely a parenting problem not a SEN issue, which was more to do with funding than anything else

What the family did:

• switch bedrooms around, just like you have, so the child(ren) with sensory issues now have a safe and private space
  
• go swimming at least twice a week so it does not matter how many baths the children have, at least they'll be clean
  
• get a fitbit for the mum and the children - they've all got really competitive now about who completes their fitbit for the day first. She did it very cleverly - it wasn't presented as "you are over eating and over weight" at all - it was "let's see who can move the most, you or your old mum"
  
• food is hard. We control the food we have in the house (no biscuits, sweets, fizzy drinks, fruit juice - nothing high sugar). There are the makings of cakes and biscuits in the ingredients cupboard, and if someone wants sugar badly enough to spend half an hour cooking, then they are welcome to it. And then we don't control sugar out and about to the same extent - cake in a cafe, or icecream from a van is totally fine (usually limited to one treat per person, sometimes limited by me having the right amount of money in my purse to enforce that). If we are in a supermarket, it is one treat per child, as in, one might buy icecream and another might buy bread and jam or whatever.
  

How is your son doing through the summer holidays? If he seems calmer, and the soiling is easing off, then it really might be worth taking him out of school until Christmas and seeing how it goes. Come and talk to us on the HE board - we are very friendly :)

[cece]

I have had 3 years of soiling from my 6 year old.

He has a diagnosis of ADHD with ODD. We are awaiting an ASD assessment. I feel sure his is a behavioural issue - he does respond during term time to a limited extent to a poo reward chart. He basically earns weekend xbox time by sitting on the toilet. He earns 10 mins of x box time for sitting on the toilet for 10 mins. There is no specific reward for pooing in the toilet rather than his pants. I have recently introduced a bonus 10 mins if it is his idea to sit on the toilet - rather than me spending half the day mentioning it to him... He is very resistant to me telling him to go on the toilet.

As for DLA we get middle rate for his soiling and also because he runs off when we are out and about - into roads etc. However, we do have a diagnosis and paperwork from school and the hospital.

[Fairylea]

You can definitely try to claim dla as the only criteria is that they need substantially more help than an average child of the same age, no diagnosis is needed. The national autistic society website has a great benefits section with lots of advice on dla.

I can't help with the soiling issues but I do know under the NICE clinical guidelines they cannot rule out autism because of good eye contact or talking (it actually says that specifically) so I would quote that back at then and ask for further assessment if you feel your son has asd.