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.

@FirstFallopians I'm sorry that must have been awful. I am wondering whether to just reapply all together if I got the form so wrong but maybe will decide after MR. I don't mind not having things backdated like if we went to tribunal I just want him to be awarded and maybe open some more doors for help.

This isn't what you're asking. But when DS was a baby we had bowel troubles and it was a cows milk allergy. Have you ever tried eliminating cows milk ( I know it's a lot) from your DC diet to see if it helps?

When I first applied I didn’t send any evidence, as I didn’t have any, and he didn’t yet have a diagnosis. We got it first time. From that I would take that the evidence doesn’t count for much at all it’s more about demonstrating each and every additional thing you have to do, how long it take and why it takes longer than normal.

@Giv0iw thank you - we did try this, he was breastfed so I cut dairy out my diet which didn't help then we tried cutting dairy out of his diet over a year ago and it hasn't made a difference unfortunately. We still limit his dairy (he hardly has any now) just because it's known to cause general constipation so we try to avoid it to not worsen the situation, even though at this point it probably wouldn't make a difference!

DLA won’t open any doors. It affects little more than your bank balance. You can use it to get in free to places as your child’s carer, but that is all it affects. Your Health Visitor/school nurse and nursery SENCo are how doors are opened really.

Just in case you aren’t aware, OP, wipes can be awfully drying. I know it’s hard to avoid them, but cleaning with cotton wool and baby oil or baby lotion can be much gentler. Even if just the last thorough clean when you’ve removed the worst of it helps.

I was told for continence issues it's 5 for daytime and 8 for nighttime. These are for more general issues, not as complex as your ds's. Does he have other needs? You need 8 points to get help if I remember correctly and the most you can get from one area is 2 points. If it helps, I have been to appeal and won, I could give a bit of help though precise wording from specialists to explain the severity of the issue is essential, age is confusing the situation

Some good advice here about the application. The thing to remember is that with all of this, it’s not that you’ve got it wrong, it’s that you need to know the very specific way that they read and consider the forms so that you know how to phrase everything to make them understand. EHCP is similar, so definitely get professional advice on completing that. If there’s a charity that deals with his condition they may well be able to help, if not there are various general SEND / EHCP charities, groups and consultancies - have a look on Facebook.

Ask them for the reasons they declined in writing and then write back in exact response to what they say with evidence. We wrote a letter explaining exactly why we thought middle rate care and low rate mobility with our mandatory reconsideration and it was approved. Not being potty trained isn’t enough for DLA but your case sounds like a lot more than this. Make it clear how often - maybe a diary of the care needed in a typical 24 hours. And explain the fact he couldn’t go to nursery. I’d be looking at getting EHCP application in as soon as possible. We made the mistake of waiting for school to do it and it delayed things so much and meant a difficult start to school with teachers who didn’t listen when I tried to explain needs.

They turn down pretty much every first time applicant tbh......appeal it.

There's also an amazing group on Facebook called fightback, they're run by a legal team and will help with the whole process. There's loads of free info on there but they'll also do the whole thing with you for a small fee, it's a charity so it's just to cover costs. In all honesty it's worth it as they really know their stuff and the success rate is so high.

Does he have Sn or just the bowel issues ?
As above it's assessed compared to a NT 4 year old and some of them are still having issues toileting

You'll probably have more luck in his 5 th or 6 th if he doesn't have any other issues

One of my children has had DLA for medical needs for the last 14 years. The best advice we had was to describe the worst day and night possible on the form, don't hold back!

We appealed a change from higher to medium rate a few years ago and is was all done over the phone and was much less stressful than I thought it would be.

I would also echo other posters in saying get an EHCP in place before he starts school as it makes things much easier for school to get things in place and will give you peace of mind. It also means you can hold school accountable if things get tricky. Our council has a single access point for SEND and will support you through the application. Details should be on your council website.

I hope you get the DLA and EHCP sorted, it's a worrying time for you. I also hope you have support for you.

Always keep a copy of what you send them.

Forms go missing and it's easier for you when it's time to reapply.

Definitely get an echp started otherwise reception class will struggle. As he’s going to probably need a 1 to 1 at least part of the time to keep changing him.

What other problems does it cause? And did you spell those out? Are things such as public transport impossible to use? Could he go to soft play? Does it generally limit where he can visit and activities that a four year old could usually take part in?

Yeah they pretty much always a project on first try keep going and going and going and you will win. I am sure also contact people on Facebook as there are proper advises that can help you on there.

@boredybored he hasn't been diagnosed with anything else although he does have very mild behavioural issues due to hyperactivity and fatigue (one extreme to the other). He suffered with obstructive sleep apnea and has had his tonsils and adenoids out to improve sleep quality but because he wakes in the night soiling himself or in pain it's made little difference to his behaviour. He's not naughty, he's just like a typical overtired child every single day because his sleep is so rubbish. It make him very emotional. I don't think it's anything more than down to lack of sleep. His dad does have adhd though so it's always been at the back of our minds but given he has these issues we know it's that.
it's frustrating because his needs are so much more than a child that's just in nappies.

Yes this! We had to apply when our son was going through cancer treatment. We were told use the very worst hour of the worst day, and use those symptoms for the entire form.

@Autumn1990 yes it affects everything you mentioned and I did put this on the form in the additional information I wrote but I don't think I went into detail explaining why because I thought it was obvious but judging by what others have said I should have spelt it out now I'm kicking myself for not doing it.

That sounds really hard. Absolutely appeal the decision and get some help with the form. My son has had higher level DLA since he was small - now older and receives PIP. You have to demonstrate that he needs a higher level of care day and night than a child of the same age without his condition. Tell them everything - I colour code mine to link the points I am making with matching points made in the evidence. I submit a paper version and write extra points as needed in the margins - l treat it as a work task - last time I took a day from work (having previously gathered the evidence) and sat at the table for the day. Also, as you see specialists and such - keep the letters/results diagnosis etc to support future applications.

@Tidypidy thank you - I haven't heard about getting en ehcp as my son's nursery hasn't spoken about it to me yet. They did say they would speak to me about help in school but they didn't say ehcp and I've not yet spoken in detail about help in school, maybe when he's got his school place they will. I thought it was just for learning difficulties/autism etc. I would be so relieved if he could get help because I am dreading him starting school.

I agree that you need to get an EHCP application in very soon.

DD2 went from complete refusal to mid rate care and low rate mobility on mandatory consideration a few years ago. I took each of their sentences and referenced my evidence and form content. They accepted my arguments.

It future always take photos with f your form it could go missing , you could need to appeal, you will do renewals. Etc

@PaulGalico1 thank you I think I was really vague compared to what I should have been like on the form. I just had no idea and didn't ask anyone for advice either. The manager at his nursery has said she will help with the MR. She was really shocked he didn't get it.

Just wondering if anyone has ever suggested surgery? An ACE procedure might help him, and give him a bit of control.

@Toddlerteaplease this hasnt been mentioned to us but I've done a little research and it looks like it would help. He's had manual evacuations under GA, he's had Botox in his colon under GA and he's had a bowel biopsy. None of them have helped or given any answers. He's been for high enemas at the hospital as well as the little bottle ones at home but they don't work.
He had Botox in the summer and was told we would have an appointment 6 months later to review but we haven't had the appointment letter yet. The Botox didn't make any difference at all.