9 year old never had bowel sensation

[BoudicanDestruction]

My son is 9 and has never toilet trained due to not getting the sensation to go to the toilet for a poo. We deal with this currently by getting him to go after his evening meal, which he is fine with and he usually does a poo. If we don't tell him, it will go in his trousers. He tells us if this has happened. There is no hiding or shame.

We got referred 3 separate times to the continence team but their advice is just based around withholding, which he isn't doing and constipation, which he gets occasionally but not frequently.

The GP put a referral into to Paeds Gastro for us but the hospital rejected it.
What are we supposed to do? Surely it's not normal that he's never had a bowel sensation?

Gastro rejected it? What a joke! This is not normal and has to be investigated, he is already 9! I will insist on this referral or make a formal complaint.

My dd took until age 4 to understand the sensation and that was quite stressful so I can’t imagine how worried you are as your ds is 9.

My only advice would be to try and get a routine embedded where every time he goes for a wee, he sits and he sees if he needs to poo.

Hopefully someone will come along with better knowledge. Good luck op.

Do you have more than one hospital you can be referred to? It might be accepted by a different hospital.

We've got a doctor's appointment at 11 today.
When he was born he had a sacral dimple that the did an MRI on. Makes me wonder if he has any nerve issues due to that. I looked online and it says that MRIs in babies for that issue can miss nerve problems sometimes and to try and go back to neurology. I did mention the sacral dimple in the doctors appointment but he seemed to brush over it and just did a gastro referral.

Get a private referral - this is not normal. He has some physical problem that needs sorting.

He was under Manchester childrens for a sacral dimple at birth and I'm worried it might be related. I'm going to ask for a referral back there I think.

And by the way - well done to all of you for dealing with it calmly and making sure he does not feel ashamed. That takes some doing and I take my hat off to you.

He's very good with it. If he has an accident he's just very matter of fact.
We are fortunate it's only ever happened at school once due to the regime we have.

My son had this and was under GOSH gastroenterology and neurology. He had anal manometry which was abnormal and had abnormal EMG (nerve impulses) and an abnormal muscle biopsy. We did timed toileting three times daily, and then when he was about 11, he gradually started getting sensation, and didn't need the timed toileting any more. They never got an actual overall diagnosis despite genetic testing and biopsies etc. He's doing well now though. Definitely push for referral - does he have any other issues that may link to either gastro or neuro?

Poor boy, this isn't good and neither is the care you have received. Yes, it does sound neurological. Time to make a complaint if you get nowhere today.

Just the sacral dimple that they checked for tethered cord for at birth. He also has hypermobility.
Thank you so much for your post as it helps me to see what needs to be done.
I'm glad your child is doing so much better!

As a parent of a child with life long bowel issues this is not normal and I would be pushing extremely hard for a referral to a pediatric gastroenterologist

I would escalate via PALS as to why the referral was rejected.

As a consultant (but not paeds) it is often that it went to the wrong department, or that the letter didn't fully put across how complex the issues are.

I've been to the appointment and the GP gave us a new referral for the childrens hospital rather than the local, for gastro

That’s good news then. Hopefully you will get some answers.

As an aside, and I’m not one of those who screams neurodiversity at the drop of a hat, but you mention your ds has hypermobility. My DS has autism and hypermobility. I recently read in an autism book that up to 80% of autistic kids have hypermobility. My DS found toileting very difficult and during his assessments they asked about his toilet habits. I’m just wondering if it could be linked to your ds problem with bowel movements. Apologies if this is totally incorrect!