My son, aged 3yr 8 months has a mild left hemi. His hand is virtually unaffected and his foot is very mild - he has piedro boots and various other splints depending what mood his physio seems to be in - another story!! He walks ok with a limp and generally gets around well.

But, he is totally incontinent. He wants to wear pants but anytime we put them on , he has no idea how to control himself and he gets upset. We don't react at all and yesterday he said that he only knows he wants to wee wee when he actually feels it on his leg. He is, i'm told, a bright child and i don't know what to do . His ot and paed (neither great) just keep telling me to leave it til he's ready. His physio said she feels it could be related to the cp but can't elaborate!! Any experience, advice or knowledge of this ? By the way i've bought every type of potty going recently !


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when chidren have hemiplegia (or other cp) the brain takes some of the uses of the damaged side and re-routes these through other as yet unused areas. so the sentsations of needing to wee could be either damaged or overlayed with some of the transferred information. i suggest you wait until the summer and on a nice day use the garden with some shade and leave off his pants. give him plent to drink and try to catch him in the potty. turn off the phone and don't plan anything else. no telling off if he wees elsewhere but masses of praise and lots to drink. it may work and it wont do any harm.

Hi Elliotb

You might like to take at look at the Scope information sheet 'Coming out of Nappies' which provides a useful checklist regarding readiness for toilet training and also contact details of several organisations who may be able to offer local advice and support. The information sheet offers a basic introduction to some issues to consider when starting to move from nappies to using a potty for a child with cerebral palsy.

Hi Elliotb
Can't help on the nappies front, my little one potty trained amazingly. What I would like to know though is how you've managed to get Piedro boots. My little one has spastic CP affecting her whole body but right side more than left and lower limbs more than upper. They keep giving her these chunky plastic splints with hinged ankles and then expecting us to go out and trawl the shoe shops, trying to get something to fit over them - mission impossible usually, although we did strike lucky with a rather groovy pair of designer boots last time. I don't know what we're going to do in the summer, her feet are going to be roasted, she has to wear long socks because the splints come most of the way up her calf, then there's the splint itself, then some kind of shoe over the top. The orthotic lady is very dismissive of our concerns on the grounds that no-one else has a problem with sweaty feet, or getting shoes to fit - hmm, not sure I can really believe that. What I want for the summer is a pair of Piedro sandles, that come up the ankle - I gaze longingly at them in the Gilbert & Mellish catalogue on-line! How do I persuade the orthotic lady to let us have a pair? And does anyone know if there might be a reason why splints are preferred over Piedros? Is it cost? I am considering buying them privately if physio agrees.
Any suggestions gratefully received.

Hi
my understanding is that Piedro boots don't provide the same degree of support as the splints and that your child almost certainly needs additional support.Plastic splints cost a lot more than the boots so if the boots were suitable you would have had them.
It is difficult to find shoes to fit but I have found most of the shops helpful.Try going shopping with the splint not the child first to suss out which shoes may fit. Another helpful tip is to pull the insole out of the shoe ,it gives the shoe more depth.You don't need expensive shoes as the splint does the support.For summer look out for the cheap sandals in places like Lidl that do up with velcro at the ankle and acroos the foot.
Good Luck

Dear Astrid

Regarding splints, my daughter has had AFOs since she was about two and a half. She always had the lovely trendy Piedro boots prior to this.

Anyway my tip is that shoes from Asda, particularly school shoes are good. They have a wide fitting and very long velcro straps so you can always get them over the splint.

Another tip is make sure your splint lady does not leave too much room for growth on the end of the splint as you will end up with very large shoes.

Brantano shoes are selling those nice velcro sandals which will go over the splints for about £10.00.

It is a nightmare though I agree and can be quite depressing trying to find something to fit. It is one of the few times that I get upset about my daughter's CP as it kind of brings home the differences.

Anyway good luck to you.

Best wishes.

KAREN

elliottb - please see my post on the education forum - i have much the same situation with my 41/2 yr old. am afraid i have no answers, as u will read, but thought i would nod in your direction. i know how frustrating it is - especially as my little boy is one of triplets and his brothers are completely dry now. it does upset him, but he is very resilient. am now just a little worried about his ability to cope at school, tho i am sure others must have been through this.

Thanks for replies about shoes. I also spoke to our physio again and she confirmed that the splints do a lot more than the boots would and we basically need to stick with the splints. However, she's going to talk to orthotics lady and persuade her (hopefully) to provide Piedro sandals to fit over splints for the summer so we'll just wait & see when we get our next appointment now.

thanks all for your advice. Sorry for recent absence but son had tummy bug then i got it ....deep joy!

Re the Piedro boots: NHS physio precribed them BUT private one says they are virtually useless in our case and are 'masking' the problem = i tend to agree to be honest. Have yesterday had call to say that he 'may' need an afo after all, i have to observe him for 10 days and see what I think....

Will let you know. Many thanks

just an update... Last Friday at nursery he told them to take his nappy off! Since then we have only had 4 accidents and he is so proud of himself. I'm so delighted with him, particularly that he's sort of 'cracked it' before he gets an Afo splint next month. Many thanks for all you advice and support.

Congratulations elliotb, you must be thrilled :)