Son's DLA has been declined re incontinence

[Greenqueen27]

My son is 4 years old and has suffered with bowel problems since birth. He has severe constipation and consultant at the hospital has done a lot of testing to rule hirsprungs disease.

He has never felt the urge to poo, even as a baby we have never saw him strain. He soils himself continuously 24/7. He has to have daily enemas and he goes into hospital for high enemas too but this is as and when. He has been prescribed sodium picosulphate and suppositories which now do not work to open his bowels.

he has had manual evacuation and Botox under GA.

His issue causes flare ups where the blockage will be so big it causes a temperature, larger than normal amounts of soiling and he loses his appetite for days at a time. some of the medication (mainly sodium picosulphate) results in him vomiting for days and becoming dehydrated. He does not tolerate the enemas and it takes a long time to do them. I have tried to keep this short there are lots of other ill effects he deals with on a daily basis.

i gave in lots of supporting evidence, reports from gp, dr at hospital, enema nurse, surgeon and letter from nursery. The nursery manager has said that he has fallen behind in certain aspects of his development in nursery due to be constantly removed from play settings to have a change of clothes due to the faecal incontinence. I called today because some evidence was sent separately and I hadn't checked to see if it was received and they informed me a decision was made yesterday and that it was turned down but I'll find out why in the letter which I should receive soon.

I spoke to his nursery manager and she was very surprised given the level of care he needs compared to other children.
I have a feeling it has been declined due to his age as looking online it seems a nappy solves the problem for 4 year olds and some 4 year olds are still in nappies anyway. However, his level of care is not just a child that hasn't been potty trained so if this is the case I don't think it's fair. I wasn't able to put him in the school nursery his sibling attends because they don't have the staff or facilities to clean him when he soils himself as much as he does. I don't know what will happen in September when he starts reception.

i don't really know how DLA works, I just feel upset because he struggles and I'm not the best at wording things and didn't have the form looked over so I'm not even sure if I've filled it out right in the first place. I added pages describing his condition in my own words to help.

has anyone experienced similar? Sorry if this makes little sense.

Agree that you should be doing mandatory reconsideration and you’ve had some great advice on this thread.

if he’s going to school in Sept you want to kick off the EHCNA (needs assessment) process now as it takes 20w. That will mean if he needs toileting support at school it’ll be funded. Look at your Local Authority website and ask the nursery for help.

I would also highly recommend reading up on your/his rights around toileting and disability discrimination for preschool/when he starts school. Under the equality act schools must have an approach to intimate care and must have a safe, dignified approach to changing him. They can’t demand you come in. They can’t refuse to take him if he isn’t continent/toilet trained. Bladder and Bowel UK have useful resources on this.

Good luck. We had suspected Hirschsprung’s although the problems are now resolved, and I hadn’t realised how all consuming poo can become!

Not having an EHCP in place is no excuse for the school not to fully meet his needs from the start.

@Readysteadyandgo that is really helpful thank you. I will get the ball rolling
with that I had no idea it took so long. How old was your child when the issue rectified itself? Part of me was hoping it was hirschsprungs so that we would have a way to fix it or just have an answer to the issue. Although I was relieved it wasn't.

@Troglo that makes me feel better as I'm worried an ehcp wouldn't be approved. Or at least not in time for school. He has started to become very aware of his issue and doesn't like being made a fuss of in front of people when he soils himself or needs changing and I worry about him in school for this reason. Perhaps if there a staff member he felt safe with that could be the one to help him would be good but I'm not sure whether he'd get that sort of help.

@Greenqueen27 our issues probably normalised around 1, but she has fairly low muscle tone and was on medication that made it worse which we think was causing the problems. She still takes maintenance Movicol now but it’s mostly fine.

I agree an EHCP isn’t strictly necessary (in that the school will still be bound by the Equalities Act regardless) but it will help them with funding and you. IPSEA is a useful organisation for EHCP advice.

They really don't turn everyone down first time. I have helped with a lot of forms and all awarded first time.

Please pursue the EHCP urgently - we found that toiletting and cleaning up DD was a huge issue as many regular staff in school will not do this.

Re the DLA we found the best technique was not necessarily long detailed explanation but bullet points which all began:

DD needs help 6 times each day to..
DD needs adult support 4 times per night to...
DD requires an adult to do xxx 3 times per day
DD can only do x with adult support
DD cannot do x

Every point is what DD cannot do or what they need help with.

It's less about the nature of the trouble and more about evidencing how much extra help the child needs

@MixedPeel27 thank you. I definitely wasn't clear enough in my form and that's where I've gone wrong

They really don't turn everyone down first time. I have helped with a lot of forms and all awarded first time.

Probably because they had your help and you know the system!

It's the parents who've never done it before (myself included) who can take time to appreciate the process and how the scoring criteria is applied. It didn't occur to me I would need any help - I'm a lawyer and I figured I could fill out a form without too much trouble, but it's so different from anything else, plus it's really challenging to step outside of your daily living situation to explain obvious things that you don't even realise you're doing for your child that are different when you're living that situation day in, day out.

I think it's often hard to switch from the usual "just get on with it, mustn't grumble" mindset when first coming to terms with the extent of a child's disabilities, and this mindset shift typically comes around the time that DLA, EHCP etc first gets applied for as part of the support parents are trying to put in place for their struggling child. It's a really difficult time for many, especially when diagnoses and prognoses aren't fully clear yet, as that adds a lot of extra stress.

I remember writing the form and hoping that some of DD's symptoms might be temporary (some had lasted years, but still less than half her life), and wondering if they might even be resolved by the time the decision would be made, so I questioned whether it was even appropriate to include them as I didn't want to say anything that might get resolved (she had had quite a bit of surgery that had helped somewhat with certain symptoms by that point, so I desperately hoped that the then current-symptoms might be lessened too) - it turns out they weren't temporary symptoms, but I think I was just holding on to the hope I had for my little girl and the life I'd expected she would have.

This all affected how I wrote out the DLA form the first time as my answers were obviously based on my perception of her difficulties and my desperate hope that she'd somehow catch up and be like everyone else and this was merely a temporary blip.

This is where I think having someone else there to ask the parent "describe how you help them with bathing", etc is really helpful to get into the details of how it's different from for a non-disabled child and to focus on describing day to day without having that overlay of the parent's feelings/hopes/denial (in my case, not OP's!) about the whole thing.

@Greenqueen27 did you write all that on the forms and add supporting evidence from a developmental doctor for example ?

I was shocked how I applied for it when my son was 2 and got awarded the highest rate . It scared me how bad he must be 🙈

Someone further up the thread mentioned doing the mandatory reconsideration over the phone. I was advised by a friend who volunteers for CAB not to do this, but to insist on doing it on paper. I think that's really important if you feel that the problem has been that you weren't explicit enough in the original form as you'll want to make sure you've got everything on paper.

If you phone to ask for the mandatory reconsideration forms the person you speak to might suggest doing it there and then over the phone but it is FINE to say no, you want the forms.

@LonginesPrime you are right I would have been much better with someone else talking me through it. I thought it would have been simple. I was very naive to how it all worked, assumed they'd reach out to HCPs or even contact me to ask things further etc. I didn't realise how hard it was to get what I needed on paper too as the extra care he needs I do without thinking and I know I didn't included some of finer details which I now realise after looking at these responses that they would have been completely relevant.

@boredybored i didn't mention anything about potential developmental delays as this is something only touched on slightly with his nursery. They did include a letter about him being below age related expectations on their letter but I can't remember exactly what was written and what were area they said , this letter was sent separately to the form 5 months ago and I didn't think to get copies of everything though the nursery have kept one. This has been spoken about with drs however it was drs dealing with his obstructive sleep apnea as they believe him having a lower quality of sleep is the main reason for any behavioural issues we have rather than it being due to the quantity of sleep (which isn't great either due to him waking up so now we have sorted the sleep apnea we are waiting to see if there has been any positive affect on his behaviour. He only had his tonsils and adenoids removed a month ago). I don't think I went into detail about this on the form I just spoke about how is bowel issue affects him in a more physical way but everything I said was backed up with reports from his consultant, gp and enema nurse. I should have went into detail about every single aspect and I didn't.

It's not worth beating yourself up. Wait until the decision notice comes, then we can sort it out.

Hello, my daughter has exactly the same issue- same investigations, hospital trips/stays and is incontinent at 6 years old. She wears pull ups 27/7. I would say you've been rejected on age but my daughter also has autism and a condition that needs care over night- we've just been awarded DLA. I would appeal.

She also has an EHCP and nursery/school can't ask you to come to change. The Eric website set very clear info this.

So sorry to hear what you're going through, my DD is wheelchair bound with CP and has always suffered with constipation and has been compacted on quite a few occasions... we had many meds to help and the product I found the absolute best are glycerin suppositories from Sainsburys. She has a lovely warm shower to relax her stomach and then on the loo and the results are amazing!. I know suppositories are more intrusive but they work so much better and once in a bowel routine it really does get better. I wish I'd found them years ago! The stool 'leakage' you describe is the poo that is making its way around the blocked bowel so hopefully once a complete evacuation is done regularly it shouldn't be a problem. You can also try movracol and we found pears worked well too. Good luck.

@salsmum thank you for your advice. He has already had suppositories and unfortunately they don't work. He has movocol every day and it doesn't make a difference. We have been trying different methods for years and unfortunately nothing has been able to resolve his issue. We do an enema every night and it can't move the blockage. He has had to have manual evacuation under GA. The only disimpaction method to work is sodium picosulphate but he doesn't tolerate this well. It obviously causes diarrhoea but causes him to vomit excessively too leading to dehydration. If we lessen the dose to avoid this it doesn't work at all. He constantly has a blockage that can be felt in his tummy. He does not feel the urge to go even with laxatives it just comes out rather than him actively pushing.

@PigglesPops thank you for your reply. I feel it is on age and because looking at these replies I did not fill the form in correctly. The age bit is frustrating. I have an almost 3yo DD who is not yet potty trained and DS' care is incomparable. I'm hoping if I can get this across in appeal

Greenqueen27 and PigglesPops, I know this might sound a bit left-field, but have you considered how your DC's interoception affects them more generally?

I ask because DD has always similar problems with not knowing when she needed the toilet, and it turns out that when she was diagnosed with ADHD (unfortunately years later!), the meds for that improved her interoception markedly, and suddenly she could feel when she needed to go and understood what the poo nurse and everyone had been trying to teach her all those years!

The encopresis had zero to do with her ADHD diagnosis (she also has autism and plenty of other things going on that also cause interoception issues, plus IBS), but it was just an unexpected effect of the meds that we just discovered by chance.

Autism and ADHD (and lots of other things) can cause interoception difficulties, and while that likely won't be the only thing going on, anything that increases a child's ability to feel the sensation of needing to go to the loo will help to make the situation slightly more manageable, in my experience.

Improved interoception also improved DD's ability to know when she's thirsty and to feel the early warning signs of constipation, etc, which helps her to manage her bowel issues much more effectively nowadays. It's still a major issue for her and it dominates her life to a large extent, but to not have the encopresis on top of everything else has massively improved her quality of life and independence.

LonginesPrime- the results of the bisopy/investigations showed a medical reason why she can't poo properly. And a further test gave another reason to her bowel issues.

Her autism was originally thought to be cause, as such, but tests showed otherwise. We're now thinking of a type of stoma for her.

@LonginesPrime this is actually really interesting. It's not something I've thought about but DP (DS' dad) has adhd and we have always wondered whether our children would have it too. There are certain things that do make me question whether he has adhd but they haven't seemed significant enough for it to be anything other than a passing thought but I do wonder if his bowel issue is linked? I only know of one other person with a child with a similar bowel issue and he has autism. Do you have a particular website or article or anything that would be worth reading about this?

@PigglesPops can I ask what other investigations she had? We have had a biopsy which we waited a long time for and it didn't reveal anything. He had Botox at the same time as the biopsy so we have been left to see if that works but im not sure if there's any other avenues for investigation.

Greenqueen27 I can't recall any specific resources as I don't think it's a common thing (our GP was surprised that random meds for something else made a difference as they'd not heard of it), but if you search for interoception and encopresis, vagus nerve, etc that might bring up something useful.

To be clear, I'm not saying that improving DD's interoception resolved her underlying bowel issues, obviously - they only helped her to feel when she needed to go, so it's not a magic solution and won't help everyone, but it did help with the encopresis element, in our case, at least.

I'm also aware that had I asked a doctor if ADHD meds would help with the soiling, they would have thought I'd lost my marbles as the two seem completely unrelated and I don't think there is any research on this (there may be- I guess I haven't looked that closely as it works for us) - it's only because we randomly discovered that improved interoception made a difference that I thought to mention it in case it's helpful to anyone.

@LonginesPrime i had a quick read on google and there does seem to be a fair bit about a potential link between adhd and chronic constipation but I haven't read too much into it. Its something worth thinking about for us although I'm conscious that I will look for anything to give us a way out of this and don't want to start imagining he could have something else if he doesn't - but adhd has crossed our minds before.

I actually think he's anaemic we are just waiting for some bloods and i'm not sure if there's a link between that and the constipation either. He is so pale and fatigued most of the time and his nursery have said he's unusually tired. He's often tired anyway due to waking in the night but this is another level of tired. He has phases of not eating because of his sore tummy so it could just be that. I'm hoping to see in an end in sight at some point.

I hope you do too, OP. It's such a stressful time not having answers, and having to explain it to the DWP, etc when you haven't got all the answers yourself yet.

The other thing it might be worth considering in the future if the doctors are stumped is genetic testing - again, might not be relevant to everyone (and we didn't get to that stage until much later), but it can sometimes shed some light on things (or at least rule things out).

Yes, sure I'll send you a pm.