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.

Hey I was just wondering if someone could help me , I've been putting it of quite a while now but I just can't keep up or afford my child's needs on small income the problem is she's bowl incontinence we're school is ringing me to come collect her to change or , or if she isn't bad to cha ge her in school then take her back she's been under tests which I've nk answers to why she's doing it she needs changed 4 5 times a day she is 9 and also got referred for adhd only evidence I have is letter stating from school would orcould I apply for dla forthos as its costing me fortune on clothes mattresses etc she's 9 years old and children her age don't do this

Hi,
I did a mandatory reconsideration and was awarded high rate care for my child's bowel incontinence, he is now 5 he was awarded just before his 5th birthday. Part of the reason he was declined was because of his age as they said children still have accidents at that age but I did a mandatory reconsideration with letters from his nursery and drs stating this is not age related and is a medical condition. I would say as long as you can prove all the additional care you would have a good chance especially considering your child's age.
i sent in letters from his nursery, surgeon, nurse and GP. Is she on any medication you could prove too?
i have been lucky with my son as his school have a care plan in place for his soiling but he does get sent home to be showered and it's so hard to balance working and having to attend to him during school hours. He is now waiting for a stoma so im hoping this makes life a little easier for both of us.
good luck! Feel free to reach out if you need any help.

Sorry I forgot to quote this message in my reply above

Agree with PPs that its likely his young age that is the barrier here. Nurseries are set up to deliver personal care and to manage soiling, nappy and clothes changes so it might not be seen as additional needs for this age. I had a similar but temporary situation like this with DS. I was told by the doctors that faecal soiling is quite common up to the age of 9 so I doubt that its taken seriously by the assessors at this stage.

The trouble we had was when DS turned school age and the school told us that they weren't allowed to deal with mess or dispose of the pull-ups etc so we ended up doing a extra year in nursery mainly because of this issue. It was resolved by the time he was ready to start school but I would have applied for PIP if it had been a longer term issue like you are describing. There's a lot of extra washing at high temperatures, and you need to buy new clothes due to staining and so on. At school your DC might need a 1:1 or you have to be on-call to assist with changes so the challenges will become more obvious the older he gets.

I feel your picosulphate challenges, especially when it kicks-in during the night!

Didn't notice your update as I was typing.

Glad you got something sorted out!

I also recommend Fightback. An outside perspective is really helpful. This is especially so when your child has issues that are similar but more extreme to the issues that most children have, rather than being something completely different that you can easily explain.

thank you! It has been a challenge and the incontinence seems to be getting worse. Luckily there is a disabled toilet where he is changed and cleaned my a member of staff but she's not a 1-1 and I'm not sure this is something available after reception. However, he is waiting for an ace stoma which should mean we can manage everything at home with little impact in school. We are just waiting for our first appointment with the stoma nurses so fingers crossed this is a solution!

the fact he needs night time care needs highlighting again on the form.

get going on the MR Op.
and push immediately for ehcp. You can apply yourself, just tell nursery manager and ask her to support.

only you can drive all this forward. Attack all areas from all sides always. Good luck.

Blimey , op, please appeal.
I hope we won't get rejected. We are on the process of applying for dla as well and I literally picked.up more paper work form.the hospital to back it all up as my dc who is very little and been sick for years with this just had surgery and diagnosed with bowel disease colitis. It affects her everyday blood and mucus, no stools, just diarrhoea, weakness and can't walk very far as she's very tired and immune suppressed. I hope we won't be rejected also. My health visitor said to write it down as if its her very worst day, write down everything how she is when it's at its peak and then exaggerate.

Has he had scopes like gastro or coloniscopy,?

Thank you for reply. I did a mandatory reconsideration and he was awarded HRC. I cried down the phone when they told me!
He has had some surgeries and is now waiting for an Ace Stoma. When he turned 5 I applied for mobility as he walking is really painful due to the skin between his legs being affected as well as the effects of his bowel blockages making it difficult and uncomfortable. Also because it affects how much he can eat he is often very weak, which affects mobility. I was hoping for just the standard rate but he has been declined mobility which is a shame. I don't have it in me to appeal it though I am extremely grateful for the care component.

Op when you have the strength, appeal again on the mobility. Because that should be included aswell. Good luck.

I could have wrote this myself but my daughter does have Hirschsprung’s disease. Diagnosed at birth. We didn’t apply for dla until she was 7 years old. She’s now 12 and it’s just been stopped as apparently she’s old enough to shower herself 10 times a day when she has a flare up and is able to give herself medicine 🤦‍♀️ we’ve just got back from a hospital appointment with her consultant and she’s now getting an enema machine because like you said her medicine makes her so so sick. Xx