Amputation

[Moommypig]

Is there anyone out there who has a child with a lower-limb amputation? If so i would really like to hear from you... having real trouble with my 3yr old at the moment who has an above-knee amputation and not only won't wear his prosthesis now but is starting to ask lots of question...

Moomypig - hello!
No, no experience of a child with a prosthesis, but it was something we had to decide about re DS when he was a baby, and if his bone lengthening treatment doesn't work / goes wrong is the fall back position. So I did do lots of research. Are you a member of the STEPS website? Its fro parents of children with lower limb conditions. There are parents there whose children have had a Symes amputation, and also I used to read LimbDifferences - a busy US site with lots of parents with children who had amputations.
TEPS have a service where they put you in touch woith families with similiar issues. And what's the other organisation that does that - Contact A family, I think.

Why won't he wear his prosthesis? is it to do with starting nursery and seeing he is different from other children?

Thanks for that... I have heard of STEPS but it was a long while ago and i had since forgotton about it! I will look them out...

He was given a prosthesis at 14m old just before starting nursery and to start with never complained. Last year, when i was pregnant and he was desperately seeking attention from the new baby he would play up a little but the last week or two have been a nightmare! On holiday we had to physically had restrain him to put it on as we only had the one pushchair and he is too heavy to carry... Any way - the last few days he has point blank refused to wear it and i even had to drag out the old double buggy just to go into town! he has started asking a lot of questions too.. All a lot to cope with!

How old is your child? what condition does your son have, if you don't mind me asking?

Hi,
I'd personally ring STEPS (number on home page) My son has clubbed feet/talipes so there are quite a few parents who responed to questions. However on the lower limb conditions part of the site it's not that active. Or just gate crash the CTEV forum and we'll point you in the right direction.
c u there

I am sorry that you are having these problems, it must be difficult for all of you.

I would also suggest contact a family as a source of support for you and your child.

Is your second child starting to walk? Maybe that is affecting your ds?

My mission for tomorrow is to set aside some extra time to contact STEPS!

In response to Pollylogos - my second child is not quite walking yet although he cruises around EVERYTHING amd is into climbing! Do wonder if when he starts to walk this may encourage son 1 but then could also push him the other way...

Spoke to the occupational health worker at the clinic he attends in Birmingham today and she has reassured me a lot of kids go though this stage about now - especially as they become aware of their own bodies. She also feels it may just be a blip so fingers x he is back on track soon... i have just found out i am pregnant again which is a bit of a shock! No 2 will only be 19m old so i am pretty stressed at the moment with everything!

Anyway - thanks for the suggestions everyone - will keep you posted!

Glad to hear you've had some reassurance from the occupational health worker.

May I say congratulations on the pregnancy? Hope I'm not out of order. Three children is a great size for a family!

Well, congratulations on your pregnancy - you certainly have a lot on your plate

Glad you had some re-assurance from your OT, and of course, 3 year-olds can withdraw co-operation over all sorts of things - threenagers!

My DS has fibula hemmimelia - missing fibula, one-off ankle joint design, small, incomplete foot and his lower leg is at least 5cm shorter than the other. He has a splint and a big shoe raise. I'm not using STEPS at the moment, but I will when DS has bone-lengthening next year. Our consultant is putting us in touch with other families having similiar treatment so that we, and DS, can see what it entails. But i do think it is v important for children to see that they are not the only ones.

I wonder about bribing him a bit? Introduce something that he would need his leg in order to do? Does he have a trike or scooter? (our physio service will adapt trikes etc - I think children with prosthetic legs can have a little fixture to keep their foot on the pedal).