At my wits end - 5yo still in pull-ups with no end in sight

[pooismymiddlename]

Please give me some reassurance, if possible.

My 5yo dd has some issues with her bowels and bladder control. She is still in nappies (pull-ups) and is under the care of our local children's hospital, but her next appointment isn't until April 2019.

She doesn't have full awareness of her bladder/bowel fullness, and although we tried to potty train her, as soon as my hypervigilance would wane, she wet herself all the time. She is on Movicol, 2xsachets a day (or often every other day, if I can't get her to drink the required mls) to prevent constipation. She was blocked up pretty bad about a year ago, but we've overcome that hurdle perhaps. She soils herself on this level of Movicol, but if I reduce it she won't poo at all.

I'm just worn out, and worried, and I don't know what to do. I don't like getting frustrated with her, and I'm not upset when she has a soiling accident, but she won't tell me/other care givers so she sits in it until she gets a rash. I know she can feel it after it's come out, even if she can't feel it coming out in the first place.

I feel so stuck. She's in reception, the teachers have been supportive, but I'm worried for her future, and I'm worn out with all the messes and just .... I don't know. It's just so tiring and upsetting.

She's also been referred for possible ASD, and I know that toileting issues are often common with children on the spectrum. Everything feels very insurmountable and never ending at the moment. :( :( :(

Please try not to worry, you are not alone even though it seems so right now.
Posting on the Special needs section might get you more replies, it's great that the school are supportive.

Thank you, I will.

Have you looked at the ERIC website and watched the Poo Nurse video?
I know you are being managed by the hospital and they have probably already gone through all this with you, but it s worth reviewing it all again in case anything rings a bell.
Did you go through a disimpaction process?
I wonder if you need to do that again?
Impaction and overflow can creep up again and be missed.
Are you using the Bristol stool chart?

If it's any consolation, I work pull ups until I was 9.. attended the gp a lot. They put it down to having a week bladder.
I'm 22 now and I have a weakisb bladder. I'm rubbish at holding it, my mum and sister can hold a wee for hours!

endofthelinefinally

It's entirely possible we've gone backwards. We did get through disimpaction, and we were doing really well for a while there, but she is very stubborn and will not sit for long. We might need to go back to the start. It's difficult to tell what's happening with the BSC when it's in the nappy.

I'll check out that website, it wasn't talked about in our hospital visit or perhaps I'd forgotten. We aren't really being managed by the hospital, I feel - our appointments are spaced far apart. I wonder if children outgrow this, which is why they aren't seeing us sooner.

APositiveMind thank you. I hope things settle for DD as well.

There is a potty training section on MN www.mumsnet.com/Talk/potty_training but I think in your case it is more a neurological issue.

I had something similar with my son 4 years ago and I second what a previous poster has said. You need to disimpact, aka completely empty the bowel, if you want any chance of success.

We were seen by a gastroenterologist and they did an abdominal X-rays . My son looked like a drug mule. He had hundred balls of poo everywhere, up to his lungs. Some of this poo, was extremely old, and current poo would make its way around it. More often than not, only the liquid part could go and this is when he would soil himself.

The doctor explained to me that there are nerves on the bowel and when they expand, it sends the signal to the brain it needs to be emptied, but in my son's case and I suspect in your DD, if the bowel is constantly enlarged, no signal is sent, and no matter how much you talk/yell to your child, she can't help it.
You need to reeducate the bowel , to reeducate the nerves, and to do so, the bowel needs to come back to its normal size.

You need more movicol and to address the diet. My son was banned dairy for as long as he was soiling.

And he wouldn't notice he was dirty. He wouldn't notice the smell or the discomfort of having poo in his underwear. He genuinely didn't realise, which drove me crazy. He was 7.

Would your GP send you for an abdominal X-rays? We were in Spain at that time, so not sure how it works in UK. Because if she has the same rock-hard balls of poo, they won't come out on their own and not with a 2 sachets/day of movicol. You need guidance on disimpactation, diet, drinks ( a lot more water) and a lot of patience.

However, if she also has bladder control, maybe a specialist appointment, an urologist, neurologist is in order ? If it is a nerve dysfunction, you need intervention on exercise, schedule , again diet.
Read this paper www.ncbi.nlm.nih.gov/pmc/articles/PMC5332240/ and see if the recommendations you were given are on the same line.
If what you were told is incomplete, for example no physio, go back to GP and become that mother, a massive PITA.
Meanwhile, she needs to drink a lot of water, for both bladder and bowel and maybe she doesn't drink enough to avoid wetting herself, but it is actually making things worse.
Good luck, it is very stressing but she is suffering far more than you imagine.
Has something new happened? New school, house, sibling, divorce, ....

Thank you, King.

I do need to push this more with the GP. I will read through that document and watch those videos on the ERIC website and push for more help.

It isn't fair on her; she is very bright and aware, and she deserves to get the help she needs.

Have you looked into interoception difficulties? This is what seems to be a problem for DD (4) just not feeling it when she is wet.

There is a moderately helpful interoception facebook group where you might get some good answers.

I agree about the Xray.
I can't understand why it is so difficult to get one when it is the only way to reliably diagnose impaction.
OP google the Poo Nurses and watch the whole video through to the end.
I am surprised the hospital haven't advised you about ERIC and the Poo Nurses.
ERIC has a very good help line too.

Also, be aware that the treatment for chronic constipation/ impaction/ overflow takes at least twice as long as the condition has existed.
Many parents give up too soon.
So at 5 years, you need to be prepared to actively manage this for 10 years minimum.

see if you have a local paediatric continence service- not all areas do some will take a direct referral others need gp -otherwise third Eric

As far as I was advised from our last appointment, we would be getting a scan for her bladder and kidneys, and some sort of therapy (???).

I really should have taken notes. :/

At her encopresis appointments (before the hospital referral) the paed wasn't keen on x-rays at all. DD has been palpated several times and have been told there is no poo to be felt. She's very slight, so I believed them (no bloated tummy or anything).

I have read about impactions, and how it can affect bladder control as well. When I talk about this in appointments I feel like I get the brush off.

She wasn't in pull-ups when she was 3 and 4 years old, but the constant wetting was really upsetting all around so at least with pull-ups we can avoid the emotional toll. It's easier to keep her clean and the school checks her and changes her throughout the day.

I will be taking her to the GP to make some more noise.

It sounds extremely stressful . Other posters have given great advice.
Just wanted to mention it might be worth speaking to the school nurses or continence nurses. If you have a health visitor still or even contact details then give them a ring. They should be able to advise you who to speak to. Our area has a healthy families team who are extremely helpful.

Phoning or emailing ERIC as others have described would be an excellent first step .

I agree, you need to push for a management plan.

Dd had daily accidents at 5 at school, was nearly 8 at night, went on meds at 6 to help. She has asd

Just so you know, the gastro couldn't feel any poo buy touching my son's belly. He was extremely surprised when he saw the X-rays. I think you can feel big masses but not the balls. So the fact that your GP can't feel any poo, doesn't mean there isn't. And my son is slim. You know how hard and deep you need to push to be able to feel the content of the bowel? The bowel is underneath the abdominal muscle wall.

Being in Pull-ups is not a solution, it is a blind fold. go to GP, say you need a plan, a team and a proper assessment in order to know how to solve it. X-rays are quick and easy. Then if there is no impactation, you can move to the next test or specialist.
She is 5 not 3. No magic will happen at Christmas, it will be work and learning through success and failure. You can't wait 5 months.

Say she is being bullied if you need to. Even if she isn;t now, at some point, children will notice, it will affect playdates, friendship, birthday parties.
Be strong, determined and if needed, take someone with you to take notes or stay in the waiting room with your DD after the visit if you think it might be distressing for her.