Sunday 29 March 2015

Looking for Answers

Today Lucy did a poo on the toilet!
Ewww I hear you say, Too Much Information!
Well, maybe, but this is such a rare occasion that I thought maybe it was time I talked about it.
Lucy is 9 years old and incontinent with faeces as she has always been.

When she was around two and half I decided that maybe it was time to toilet train her. It didn't go well. She hated it and refused to sit on the toilet or the potty. So I left it for a while.
She started nursery at three and they wanted their children to be toilet trained. Lucy was suspended when they caught her in pull-up pants. So we tried really hard to train her, it was awful but we managed to get her to wee on the toilet. Poops were a different matter but we thought they would come later.

At six years old Lucy was being diagnosed for Autism and Hypermobility Syndrome. We talked to the psychologist about her toileting problems and she told us to go back to the beginning and try training her again. We hadn't stopped.

Over the years we'd tried.....

  • potties of all different shapes and sizes, even ones that made music when you pee'd.
  • wall charts with stickers,
  • rewards for getting it right (She didn't get any)
  • restrictions on favourite activities for not getting it right (We gave up on this because it was too cruel)
  • timed regular visits 
  • we read toilet training related story books
  • activities during visits (books, handheld games)
  • we even painted the smallest room pink and added girly pictures and curtains and a lovely Disney Princess toilet seat.
Basically, if there was trick, we tried it. 

Nothing worked.

When we spoke to her GP about it we were given meds for constipation. If she was pooing in her pants then it must be overflow from constipation. Nope, it was just poo.

Today's poo wasn't really a success, she hadn't gone for one, she'd gone for a wee and it had just come out, This has happened a few times (probably too few to mention!)

She says she can't feel anything, she has no idea that she needs to go and can't feel it coming out. The first she knows about it is once it's out. Sometimes she's quite quick to tell us and we get away with only a little in the pants if we get to the toilet quickly enough. Most the time it's a disaster. It's distressing all around. Her only saving grace is that she generally goes either morning or night so it hasn't happened at school very often. We've tried just making her sit and wait for it but without her having any idea of when it's coming we haven't had much success. She doesn't like being told to go to the toilet all the time when she doesn't feel any need to go.

So now we are waiting to see what the hospital has to say about it. Just a couple more weeks until her appointment. Will they take us seriously? Is there anything they can do? I don't know, but I really hope so because the current situation is really no fun. 

Too Much and not Enough

 As you may recall I told you that Lucy has a syringomyelia and I've been getting advice from a neurologist who is not Lucy's doctor...