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4 Year old girl, cp and not getting toliet training

(6 Posts)
Albaba Mon 09-Nov-15 16:13:39

I have a 4 year old girl who has cp diplegia. The problem is she is not getting toilet training at all. I am so frustrated with her and at the end of my tether that I could cry.

She has a twin sister who has no disability. She has been toilet trained for ages and didn't really need much help from us for doing it. She still wears a pull up at night but during the day would be 100% reliable and would take herself to the toilet if she needed to go.

My other dd goes to a mainstream nursery and has a classroom assistant. We have drummed it into her that is she needs to go to the toilet to ask X as she needs a bit of assistance with her balance and pulling up and down her pants and trousers. The problem is that if you set her on the toilet she will go but she won't ask to go so for example she could need to do a pee but instead of asking would just pee herself. She gets her 1 to 1 class room assistant for 15 hours and in this time seems to stay dry. I think the rest of the time though that the staff are busy and she is not getting the attention that she needs. There are some days when I come in and the staff say X has been great today and has had no accidents at all and we think that we are finally getting somewhere with her. Then other days she has had a bad day and has peed herself about four times and it doesn't seem to annoy her sitting in wet clothes. I know she is capable of toilet raining and of course you expect accidents but she is 4 and is in preschool and I think the only one not potty trained by a mile. She is due for P1 next year. What will I do if she is not potty trained by then? I feel like such a crap parent that I can't potty train a child when others at 2 and 3 are easily potty trained.

Today she stayed dry at preschool which was great only to get to Granny and Grandads and peed herself three times in one afternoon. Three adults were there to ask to help. There are pottys and a downstairs toilet but she just sat on the floor and peed herself. Got changed and done the same two more times. I don't mind her being in a pull up during the night but don't want her to be seen like a baby at nursery in pull ups during the day so she goes to nursery wearing big girl pants. I don't like sending mixed messages but sometimes I would put her in a pull up during the day just to save embarrassment. We had a particularly embarrassing incident at physio a few weeks ago. My dd was asked numerous times before she went in if she needed the toilet and said no, she was set on the toilet and didn't do anything so went in to our physio session and done a pee and not only a pee but a massive flood of a pee. I know taking in her disability things might be more difficult but its the fact that she will just sit and pee herself and isn't bothered about sitting in wet and smelly clothes that worries me.

Has anyone else been in this situation or have any help for me I would be so grateful. I need to get this situation sorted.

DeccaMitfordsEntryVisa Mon 09-Nov-15 16:15:49

Does the hospital that your dd is under have a Continence Nurse Specialist?

My eldest has hemiplegia (plus other conditions) and we found the help of this health professional invaluable.

Albaba Mon 09-Nov-15 16:23:10

It has never been mentioned to us about a continence nurse specialist. It just feels that we have been very much left to our own devices and we are struggling. I thought that my dd would eventually get things as she does have a physical disability but is mentally ok. Maybe we do need a bit of extra help. What would she be able to do for Us?

DeccaMitfordsEntryVisa Mon 09-Nov-15 16:38:24

It depends on child to child, but ours ran tests and a scan to check how the bladder was working (and if the CP was having a big impact on toilet training) before offering us some meds and lots of tips for home and school.

Definitely worth asking your local paeds dept - although they could say you need to wait a bit longer before they intervene.

Sleepingtom Mon 09-Nov-15 16:58:56

Just to say don't feel like a failure. It isn't your fault, you have done you can with the help you have been given so far. Insist your GP refer you for some help from contince specialist, and the website ERIC is also good, and they have a helpline.

My daughter has no disability and was only fully potty trained at four (just before school...) so you're not the only one. In our case a food intolerance caused fear of toileting which was a nightmare. So I feel for you and hope you press for help so you don't do feel so alone! You are right there is a tendency from health professionals to leave parents to get on with it. (Helpful).

I used an advent calendar (opened at end of a successful day) to encourage mine to go to the toilet at normal times (and thus prevent accidents) in the end. Not sure if that would work in your situation but mentioning in case.

pilates Mon 09-Nov-15 17:18:16

Op, I have sympathy for you but do you think the muscles may not be working properly so she doesn't get the feeling of wanting to go? Could you ask for your DD to be referred to a Urologist to get checked out?

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