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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to ask if you know of any amazing adults needing nappies?

47 replies

Greenyogagirl · 12/08/2018 14:11

My son is in nappies, he has bowel problems, sensory processing disorder, autism etc due to various things he is now very aware that most 8 year olds don’t wear nappies, he’s really anxious about it.
So who are some amazing people who have done amazing things and had to wear nappies?
I assume Stephen Hawking?

OP posts:
Greenyogagirl · 12/08/2018 16:32

feisty thank you for the link, it looks promising. He gets high rate dla thank goodness or I’d be screwed!

OP posts:
Greenyogagirl · 12/08/2018 16:38

He’s under the continence team, I’ve been to so many appointments since he was 5 and nowhere near potty trained, he’ll be 9 soon and roughly every 6 months I’ll go back to the gp, beg for help, he’ll refer to paediatrician or incontinence nurse, they’ll say nothing they can do, have I tried routine/sticker charts he was on medication for 2 years due to constant leakage of urine and poo, we are nowhere closer to being potty trained and I feel like I go round in circles.

OP posts:
smurfy2015 · 12/08/2018 16:42

www.paediatriccontinenceforum.org/wp-content/uploads/2018/01/Paediatric-Continence-Commissioning-Guide-2014-PCF-2018-version.pdf
If you look at section 1.8 on page 15.

Section 1.5 on page 11 describes the population to whom it applies - There are approximately 900,000 children with a continence problem (See 1.2). This includes children with toilet training difficulties relating to a learning difficulty or a physical disability.

From tips on caring for a child with a disability = www.nhs.uk/conditions/social-care-and-support/caring-for-a-disabled-child-tips/

If your child's health condition affects their ability to control their bladder or bowel, their doctor may be able to refer you to a continence specialist.

An occupational therapist can advise you about special potties or toilet seats if your child needs help with sitting, or about any bathroom adaptations that might be useful.

A physiotherapist can advise about issues such as moving and handling your child or finding the best position for your child to be able to use the toilet.

Your local health authority's incontinence service may be able to supply items such as larger nappies, pads and bedding protection once your child is over a certain age (this may vary from area to area).

If they're unable to do this, they can tell you where you can buy them privately but push for an NHS service first, I have heard of some places like in your pp saying we can't help and so you spend £100s a month (and I'm guessing you are like the rest of us and don't have it to spare but that's an assumption hugs)

If you have a water meter and your child's health condition means that you have to do a lot of laundry, you can apply to your water supply company to cap the cost of your water under the WaterSure scheme. Ofwat has contact details for water companies.

The Family Fund can also give grants to low-income families for a washing machine or tumble drier. (this may help someone else if it doesn't help you)

For the bed, I have a hospital bed as it rises up to the level the carers need to handle me and the middle of it is always covered with inconti sheets (not the ones like puppy pads that hospitals have) but comfy ones,

The brand name is Kylies but these are far too dear. I use an unbranded one and it works as well. It was a one-off purchase and then I replaced some of them 3 years later. They work out about £6 each and absorb up to 3 litres at a time

They absorb any urine and while faecal matter can get on them it pulls any liquid into the bed pad and then the actual matter can be wiped off with a couple of baby wipes and put into a nappy bag and into the bin.

I have bought a supply of "red bags",(50 for about £8 in postage) they are popped into one along with any clothes/nightwear that got it and the red bag goes straight into the washing machine still tied. The most of the bag dissolves in the machine and take out just the remains of it and bin,

Tena lotion is good for keeping skin right with all this going on but while I know some Drs won't prescribe it (my district nurse asked me how I managed to keep skin intact),

I am prescribed dermol lotion by the DN team but the script is done by GP so I advised the nurse that it does exactly the same as Tena and can be used in the shower as well. So prescription requests for it have gone up around this area as they are prescribing it for all who need it as didn't know it worked the same if not better

This is some ramblings which may or may not help but hope it does.

It's like everything else but to get services which he might need long-term (but I hope not), you are his best advocate.

Best wishes to you and your son. (((hugs)))

smurfy2015 · 12/08/2018 16:44

If they're unable to do this, they can tell you where you can buy them privately but push for an NHS service first, I have heard of some places like in your pp saying we can't help and so you spend £100s a month

They can give you an allowance of pads per day and if you need extra you will have to supplement them but definitely try and get a supply from them as it will take some of the financial cost from you.

smurfy2015 · 12/08/2018 17:11

Write a letter to the paedtrician and copy in the GP and whoever else is relevant, with the history, possibly a chart of a week of what is happening, explain that while you are thankful of the help you have recieved (the nice layer of the shit sandwich),

The middle
this is the way things are and he is effectively being discriminated against due to his conditions. (check your country discrimation as it is slightly different in NI, than the other regions of the UK so there may be a difference say in England)

That you have tried routine / sticker charts (brilliant if you have dates/years maybe from benefits forms?) and that this is not acceptable, you would like referral to a paed urologist and/or gastroenterologist as it is something which is affecting him on a day to day basis and he needs help with regardless of any other condition he has.

the nice bottom of sandwich - thanking them for their help and looking forward to working with them in the near future.

Copy it to as many as possible, key workers, literally everyone who is on the bigger health care team

be detailed to the point of graphic in your explanation what is happening and what you would like to happen and what you feel might help as well as being open to ideas from the specialists in these areas the Paeds gastroenterologist/urologist.

Explain the consistency of the faecal incontinence using the Bristol Stool chart.

NAS - have some information as does a charity called Fledglings which offers solutions to problems faced by children with disabilities.

Bladder and Bowel Foundation has the Just Cant Wait - www.bladderandbowel.org/help-information/just-cant-wait-card/

to ask if you know of any amazing adults needing nappies?
to ask if you know of any amazing adults needing nappies?
Greenyogagirl · 12/08/2018 17:20

smurfy2015 you are amazing, thank you so much. I really appreciate it and will definitely be making an action plan to get him some help, thank you x

OP posts:
Purplestorm83 · 12/08/2018 17:50

@smurfy2015 thank you so much for taking the time to post all that. I run a nursery and have often come across families who need more support with toilet training, all we get told is to go to the ERIC website - your advice is invaluable. I will also be investing in the red bags - didn’t know they existed, I think parents will really like them!

slithytove · 12/08/2018 19:01

Some F1 drivers?

Greenyogagirl · 12/08/2018 22:34

smurfy15 red bags will be a life saver, honestly I’ve been to every website, spoken to school nurse, gp, pharmacist, paediatrician, incontinence team and you’ve given More information and genuinely helpful advice than I’ve ever got from those places!

OP posts:
smurfy2015 · 13/08/2018 04:23

No problem at all, glad it was helpful. Just my ramblings and you got them instead of the cat cos she is fed up listening to me. ;)

For others who are wondering about red bags, this is from an random ebay seller, it was the top one when i searched - www.ebay.co.uk/itm/200-laundry-bags-red-disposable-with-water-soluble-dissolvable-strip/202387848688?epid=1230499817&hash=item2f1f417df0:g:ViMAAOSwi8dbYIWW - £10 for 200 and free delivery

Anything else just ask and il try and answer, I have a load of knowledge which has come about by living with this so good to put it to some use.

www.amazon.co.uk/Washable-Bed-Protector-Pad-Tucks/dp/B008645BP6/ref=pd_nav_hcs_rp_1?psc=1&pf_rd_t=40701&pd_rd_i=B008645BP6&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_p=0137e703-6331-4024-98a3-f0c2fb16ec2a&_encoding=UTF8&pd_rd_wg=HwE6q&pf_rd_r=J1CY3XDBHGRFZRZBCEEV&pf_rd_s=nav-high-confidence-slot&pd_rd_w=nGjST&tag=mumsnetforum-21&pf_rd_i=nav-high-confidence-slot&refRID=J1CY3XDBHGRFZRZBCEEV&pd_rd_r=c039782a-e392-4b6b-bd18-77353a519fa0
Thats where I got my supply of bed pads, they are handy as they are straight into the machine and dryer and then are ready and waiting for their turn on the bed again, they do take a while to dry in a dryer i should add because they can hold anything from 2 litres to 5 litres so can absorb a lot in the wash cycle. Definitely much more comfortable to lie on.

Remember if needed there is the family fund as a dryer is essential in this case. Also as mentioned above re water meter, if you are on an electric meter you may be able to get some credit because of your sons disability as you are having extra expense because you need to run certain things like washer and dryer more often than you would if he didn’t have this problem. I had a SW tell me once that I should use DLA to cover x,y and z.

I spent the next 10 mins detailing to her what it is spent on and what did she suggest I cut, she then helped me apply for a grant to cover the costs as she had assumed it would cover everything. (I wish)

As you mentioned OP that you currently using "a mix of pyjama pants and the biggest nappies I can get." - while waiting to be seen to get what you need, consider using x-small adult incontinence pants or pads.

Is he able to help clean himself up as needed, I recommend something like the portable bidet, it gives him some self care but also allows him to play with water as cleaning up must be hard as Im guessing from SPD he may not like touch or may feel it differently than others, I dont really know re that but it gives him total control and Im going to remember 9 year old me and loving spashing with water - basically squirting water at my bum - what could possibly go wrong? www.completecareshop.co.uk/personal-care/personal-hygiene-aids/portable-travel-bidet

If he has good dexterity there is a long reach bottom wiper, www.ebay.co.uk/itm/Mobility-Aid-Self-Wipe-Toilet-Helper-Long-handled-Easy-Reach-bottom-wiper/202380136868?epid=1340420798&hash=item2f1ecbd1a4:g:aQMAAOSwqu9U8KZz thats the one the OTs tend to give out, I had a hilarious lesson in how to use it in a lets pretend to go to the commode type way LOL

This one is an import and I wouldnt normally recommend going for HK or Chinese goods but its far better than the first one, it actually grips the toilet paper whereas you have to poke the toilet roll into the rubber end of the 1st one. www.ebay.co.uk/itm/Bottom-Toilet-Self-Wipe-Aid-Long-Handled-Wiper-Easy-Reach-Tissue-Grip-Helper/202326891147?epid=28020026122&hash=item2f1b9f5a8b:g:6LQAAOSwzFxbD12U

Between the wiper and the bidet, he can hopefully have a bit of fun and it might make things funny for him and you can both share a laugh about it, it takes any stress out of it

If any red areas come up on his skin as a result of contact with soaking and/or soiling, I can only tell you what I use myself as it would be like advice on here so Im being careful. Get a jar you can seal a clip top jar is ideal, mix equal portions of metanium / sudocreme / Vaseline – stir together – apply twice a day, it will heal any redness up quickly and easily. I use a waxing stick / tongue depressor / spatula which takes 1 a time and dispose after each use. I get a box of 100 for 1.99 inc P&P

If you and your DS are out and about do you find it difficult with regard to public toilets? Apart from the Just cant wait card, do you know about Changing Places toilets and RADAR keys?

Also recommend this site which basically gives you DIY OT assessments and possible solutions. It has 2 sections so adult and child but both start off from the same page.
asksara.dlf.org.uk/

Also if you use wipes to help clean him up if needed, try something and see how it goes, when he was a baby you used cotton wool Im sure esp at the beginning in his early months. Buy a large roll and unroll flat and put it in the airing cupboard and heat on for an hour or 2 and it will double overnight, use baby lotion, just the most basic one you can get as less chemicals in the cheapest ones just the bare basics groceries.asda.com/product/baby-skincare/asda-little-angels-baby-lotion/910000820932 is 500ml for 75p however its not great if he has eczema

You can probably tell im money conscious tight, cant you? LOL

Queenofthestress · 13/08/2018 07:31

Smurfy, you are bloody amazing!

smurfy2015 · 26/08/2018 09:00

@Greenyogagirl Hope things are a bit better, I've been wondering if I can point in other helpful directions so here are my thoughts, hope they help someone if they don't apply to you

www.radarkey.org/ This is the official one as there are others on Amazon, eBay etc which are all copies and may let you down when needed

www.radarkey.org/app.php - phone apps for finding toilets

pamis.org.uk/campaigns/ Changing places toilets in Scotland

changingplaces.uktoiletmap.org/ There are 1152 CP toilets across England, NI, Scotland and Wales, inc Isle of Man and the Channel Islands,

www.euansguide.com/news/red-cord-card/ Also worth knowing about the Red Cord - card campaign

RonaldFon · 08/12/2018 02:50

excellent information, it also helps me to tell my son that there is no need to be embarrassed about certain things.

Peacocking · 08/12/2018 06:54

What amazing detailed messages Smurfy. I'm sure that the ripple effects of your messages and the knowledge and information you've shared will end up helping so many people!

Kittycuddles · 08/12/2018 07:48

I'm not extroidanairy

But I am a 22 yo women who wears incontinance pants every single day without fail unless I'm up for wetting myself. I am fully urinary incontinent but there's nothing wrong that that!! Lots more people have it that you know and the pants and pads have the added bonus of being super comfy sometimes! :)

I also self catherterize and that's okai also! Lots of people do and I was told by my bladder and bowel nurse that so many people have this condition of urinary incontinance that's it's completely normal and it was also said that you just don't know who else is having to catherterize in private!

smurfy2015 · 08/12/2018 08:01

No problem, happy to share the info as knowledge is power.

Also where I mentioned about water meter and the electric to run a washer and dryer - get yourselves added to the priority register for each service as for the Water service for me, I am a priority case for trying to get water reinstated asap as need a lot of changes of clothes and bedding (yesterday, for example, was 5 changes, I've already changed pad 3 times due to soaks so far today), With my water supplier they also supply emergency bottles of water, so that in the event that can't drink the water there is something to fall back on. As I live alone so my water allocation for 3 days back up supply I was given 8 x 2-litre bottles of water.

Also depending on the electricity supplier, you are with you might be able to go onto their priority register as well depending on the supplier and their local criteria. This makes a difference in that, when you ring thru (using either mobile or plugged in landline), with whatever number that is recorded on their system so they can prioritise your call and they will keep you updated during an outage about how long you can expect to out. In a planned power cut, they give you at least 5 days notice in my area.

smurfy2015 · 14/12/2018 15:45

@Kittycuddles I also self cath sometimes too but not always physically possible, I get masses of bladder spasms which are miserable but I get thru it, Flowers

Kittycuddles · 16/12/2018 15:00

@smurfy

The bladder spasms -- dear god it's like no other kind of pain isn't it, like period cramps and simultaneously needing the loo like your bladder shall explode!! -- YEAH I quite often don't make it in time to catherterize but fairs fair I guess, I need to pay more attention to my bladder, I tend to try NOT to catherterize as sometimes (because I have an urethal stricture) it can hurt like hell. The bladder and bowel nurse who catherterize me for the first time to show me how said she had NEVER seen someone in so much pain as she had me Before, yay!!!!!

I love living in pissy clothes ;)

Hope all works out for you tho man, and the spasms aren't too much to bear. ((Hugs))

smurfy2015 · 20/12/2018 17:38

@Kittycuddles Flowers (love the username by the way :)

Yes its a very unique pain, I pass a little at a time sometimes a flood, I've just had a 24h cath this week for a urine collection test, which has made things worse but no way could I ensure I caught every bit for the collection.

I had a GP appt this morning, I explained to her it was only 10am and I was on my 3rd change of clothes we looked at my medication to help with it but I am already at the top level so it will be after Xmas she said she will phone urologist and see if can suggest something to add

Ouch to the stricture, I don't have full feeling in that area and lots of brain/body miscommunications so I don't get the signal until I feel the warmth and its too late by then.

user1473878824 · 21/12/2018 00:04

OP I can’t add anything helpful but I’m so glad people are suggesting stuff and I can’t word this properly but I think it’s awesome you’re finding cool people to tell him about.

But @Missingstreetlife I’ve got to ask: Stephen King?!

Vampiratequeen · 21/12/2018 00:47

My brother, he might not be as amazing as Stephen Hawking or anything like that, but he has cerebral palsy, wasn't supposed to survive past 2 days, he is now nearly 43, he can't walk or talk, but has an amazing sense of humour, he used to play football, he has been horse riding, he did a food tech course and I think he is amazing for achieving these things when according to doctors he should never have survived. He is also a wonderful Uncle who loves my 2 DC.

Motoko · 21/12/2018 02:49

I get my pants (they're by I.D)on prescription, but I also buy Tena pants to wear when I'm going out, because I've found the I.D ones can leak if I move about much. I found buying them in bulk on Amazon worked out a bit cheaper than elsewhere. A box of 4 packs of 10 Maxi pants, costs around £45-£50 (it fluctuates), and the seller is called Drylife.

I don't know if this is similar to what you're already paying, but thought I'd mention it.

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