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SUE TAYLOR

NEED SOME ADVICE FOR MUM OF 4 YR OLD!

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Hi all,

I have new neighbours who have a 4 yr old little girl.

This little girl has had her foot amputated at the ankle and has a prosthetic leg.

The leg is awful to look at - it is 2 different colours and has what look like tape wrapped around the join from the foot to the leg! Not only that but her limb centre will only supply 2 of the 'covers' that cover the knee section. Apparently they are made for arms - but used on legs also - they look like tubigrips! These 'covers' get worn very quickly (she is an active 4 year old) and her limb centre have refused to supply any more - she has been told that when they wear - Mum has to turn them around so that the holes etc. do not show!!!

Her mum has also been told that she cannot have a 2nd leg - due to her age! So she has 1 leg and 2 very tatty covers that she has to interchange!

The little girl is lovely - but she hardly speaks since her amputation (not a year ago - I think). She does come to my garden to play with my boys and has, in the last few days, started to speak to me - really heartwarming to see and hear.

She likes the water also and won't go in now as children have made fun of her - the limb centre has told her mum that she should wear her leg into the water!!! I though that the parts were corrosive when in contact with water - unless a water leg!

I am wondering if there is any advice to be given on her entitlements in regard to legs and these knee covers?

Advice would be welcome to her Mum.

Sue - Cardiff - UK

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Hi, I don't know what the rules are in UK, but in Utah I receieved one leg a year when I was growing. Sometimes younger children require 2, depending on how fast they grow. She sould be using a trans-tibial system like the one shown here: http://www.endolite.com/children.htm This type of a leg is constructed of carbon fibre, and is tolerent to water. Prostetic knees and rods are the objects that need careful consideration when it comes to swimming. Since she is a trans-tibial, there is no need to worry.

Hope this helps a little, best of luck,

Nicole

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Hi Sue

I'm not sure about entitlement for children, but I beleive all items are 'on' prescription. So it may be that there is a statutory limit as to what anyone can have during a certain period of time.

This is one of those 'learn the rules before you play the game' situations, as in finding out what her entitlement is?

Off the top of my head, I would post in the Limbless Association forum this question:

(What is the entitlement to prosthesis and covers for a four year old child?)

Or contact the Limbless Association direct and ask them if they know.

If it is the case that there is an allowance over a period of time (1 prescription for each item, i.e. once per year) this may be deemed as unreasonable, giving consideration to the childs age and activity level. This apart from any psychological problems caused by the state of the covers etc.

At this point in time, it would be difficult to suggest who might be able to help in this matter.

Once the answer to the question above is gained, then it should dictate as to whom can be of help.

I hope this helps, please let us know how they get on.

Best regards

Steve

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Hi Sue,

Here in Australia ......... Josh is entitle to one regular leg and one sports leg/foot.His foot has been ordered from Seatle USA ........ he will have his leg in 4 weeks.

Kids need to be active and put their best foot forward at all times.I think its great that your looking into her situation.

Debbie

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Thanks guys for all the help.

Steve, I will try the Limbless Assoc.

I hope that I can find a solution that means that this little girl can live as normal a life - without being made to feel 'different'.

When she smiles - she's so pretty - its a shame that very little seems to be done for her by her limb centre!

Sue - Cardiff - UK

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Hi Sue

I think this little girl and her parents are very lucky to have you as a neighbour.

I agree with all you say. What I would say is to make sure that the little girl is under regular review with regard to her limbs and possibly an orthopaedic surgeon. I was almost a teenager when I lost my legs, I had regular reviews for a few years, however this tailed off in 1980's when changes in the limb service took place. When I left hospital, I was no longer under the care of a Consultant. Apparently, my mother was told at the start I would need further surgery because I was still growing, this was never done. I am now a little older!!! (lol) and am having major problems getting limbs to fit.

In many areas now, smaller centres do not have medical input and I think it is vital that this little girl gets the type of limbs and medical input which will enable her to keep active throughout life

Ann

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Sue:

You and your sons are a true blessing for this little girl. You accept her as she is as a real and valued person - even as you campaign for better service for her.

Sounds like the limb center is ill-equipped to care for child-sized prosthetics, and is making do with adult arm parts. If need be, they should refer her to a center that CAN serve young children.

We all know that a child of 4 will be growing rapidly and will need frequent up-sizing and/or replacing of her prosthesis many times until she is grown. The Health Service should be prepared. Happily, very few children in the total population have these needs. But the few who do should get the very best service. Doesn't every child deserve the best that society can offer?

Keep campaigning for this child. Keep on lovin' her.

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Hi Dick,

I agree that the limb centres should be more equipped for children. This little girl has now started to 'hide' her leg when her parents have visitors!

She was over at our house the other day and was hiding her leg - I then took off all the legs and liners from my leg and we sat on the floor chatting about our legs and how they don't make us different - such special. I have now told her I will 'make' her some Barbie sleeves so that she can wear them over her leg and look fantasic and girlie!

Her limb centre have asked her parents to come in for a meeting with a manager as she is using too many sleeves at a cost of about £5.00 per sleeve - she has 2 per month! I've said that I will go with them for this visit.

Chelsea's parents have toldthe limb centre that they use more as she wets since the operation and also that she is a normal 4 year old who falls and likes to get mucky etc (what child doesn't). They suggested that they take Chelsea to the Drs to sort out her wetting!!! What a cheek!

I rarely get fired up - BUT this little girl deserves better! and I fear that if this doesn't get resolved now - then as she grows up - will she be less out going, shy and always be conscious of her leg? Whereas she should be confident, outgoing and secure in the way she looks - she is a beautiful child.

Just needed to vent....

Sue - Cardiff - UK

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