Contents

What is Perthes?

Who are we?

What are our aims?

Contacting us
 

What you can do to help

NEW PERTHES RESEARCH CLICK LINK BELOW

Perthes research Abstract 2002   

What is Perthes?

 Legg Calve Perthes disease is an uncommon condition in children aged between 2-14 average. It seems more common in boys. Some children develop Perthes in both hips - bi lateral.

Perthes disease is not common. In fact it is not a "disease" in the true sense of the word, nor is it catching.

The blood supply to the femur head temporarily stops working for some unknown reason. The femur head then goes through a process where it collapses and/or flattens and stays this way until the blood supply returns and slow bone regrowth takes place. A child will initially complain of knee or groin pain and develop a limp. The condition is diagnosed by x-ray. The younger child may blow on his/her knee and this is accepted as 'referred pain'. Perthes children find they just cannot walk any distance without feeling severe pain and discomfort. It is therefore useful to have a wheelchair to enable family life to continue as normal as possible.

It can take from 2-5 yr. to recover and we must take heart that it is NOT life threatening and for most children they make a full and active recovery. However, it is possible some children will go on to develop early arthritis requiring a total hip replacement later in their life.
 

Treatment depends on the child's age and at what stage Perthes is presented upon diagnosis. It also seems to vary from area to area. Some children will be admitted for traction to ease pain and bed rest. They attend regular hydrotherapy to help stop the hip from stiffening and to ease pain and help build up muscles. All our children have found benefit from this and if it is an option for your child we strongly would advise it. Some children are put on 'restricted activities' where there are restrictions placed on their weight bearing activities, i.e. no running, jumping, horse riding and football etc. For some children they are put into a wheelchair, crutches, and body splint and braced. Others will have surgery for a variety of reasons.

The main goals are :-To ensure the child has good abduction and rotational movement and that the
femoral head is contained in the socket.

It would seem that the final shape of the ball of the femur head and socket shape will determine if the child can expect to suffer arthritis in later life.

It can be very distressing watching your child in pain. See your GP for medication. It is naturally upsetting for the child watching their peers play football and other weight bearing activities when they have been forced to stop. Compensations can be made by adequate help from a child's school who can seek help and advice to integrate them into PE/Games using non-weight-bearing activities. Out of school children take up Fishing, bowling, become excellent swimmers where they can compete as equals with their peers.

From our experiences some children show mood swings, behave verbally and/or physically aggressive. Their schoolwork may suffer because they have to take time out of school to attend hydrotherapy, bed rest or hospital appointments. Sometimes they are wrongly 'labelled' as 'disruptive' in class because they feel the need to get up and walk about to ease stiffness or discomfort. These children do not have 100% health and often cannot give 100% concentration to their work. We ask people to make some allowances but not excuses for a Perthes child. All these feelings are a normal part of the child trying to accept his/her disability and the behaviour problems are caused by the sheer frustration of the restrictions imposed on them. There is a lot of pressure on these children, they just want to be like their friends and live for the moment knowing they will probably be in pain later. This is why it is unfair to expect a younger child to take the responsibilities of the restrictions for themselves. They are first and foremost CHILDREN, and wherever possible should try and live as normal a life as possible. This can  be acheived through ongoing support
and the use of appropiate equipment.

We have found that our Perthes child benefits from wearing training shoes as these seem to help 'cushion' the impact from the hip. Also if the child develops a leg length discrepancy some hospitals provide shoe lifts and boots or training shoes accept these well. In court shoes they tend to 'step out of them'.

We know that stepping off a pavement can cause a jolt to the Perthes hip, it is the little day to day things that effect the child that we tend to take for granted.

We find during changes in weather and temperature effect the child. Extra care and supervision should be taken on icy days. Indeed things like standing around in a queue can cause the hip to ache.

We wish to reassure you that NOTHING you did or could have done would have prevented your child from getting Perthes. You must not feel any guilt. There are many theories into the cause but as yet nothing has been consistently proven. REMEMBER: Most children make an excellent recovery.
 
 

Who we are.

We are a group of  parent(s)/carer/guardians whose  child/grandchild  has or has had Legg Calve Perthes
Disease. We welcome anyone with an interest in perthes. We were formed in September 1997.

We meet at the Children's Centre in Hull UK, we have a coffee and chat. We sometimes have guest speakers
or organise fundraising events to enable trips and treats for  the Perthes families as well as purchasing wheelchairs and other equipment.

We believe in Equal Oppurtunities.

We are affiliated to :  The Hull Council for Voluntary Services/Hull Carer's Centre.
                                     S.T.E.P.S  charity,  reg no.
                                     Contact a Family  charity, reg no..284912
                                     AVN/Perthes Support Group in USA/Internet based.
                                     Barbara Kelly's Legg Perthes Group USA/Internet based.

The realisation that your child is restricted does affect the "whole" family unit. Days out have to be carefully planned. The feelings of frustration and emotions are natural and ALL Perthes families experience it at some stage. A Perthes child does not get a 'day off' from the condition and neither does the family. We hope our group gives a 'healthy' prospective to how families react and cope with a Perthes child.

 Initially we are here to listen. To ease the feeling of isolation and to share experiences and for other Perthes children to meet.

We believe no one understands Perthes better than another Perthes parent.

To provide basic Perthes information, ongoing support, advice on coping/living with a

Child who has Perthes. Practical, education, Health service advice.

Fundraising to provide equipment and trips and treats for children and their families. In the summer of 2000 we had our first national day out at the National Film and Television Museum
at Bradford UK. It was enjoyed by all.

We have also been to the White Post farm in Nottingham and more recently to the

Royal Armouries in Leeds where  a cheque from the Kingston upon Hull Volunteer Fire Brigade was

presented to the group.    

Here in the UK Parents can apply on the child's behalf for Disability Living Allowance,
(from April 2001, 3 to 4yr children will now be considered). On receipt of the higher rate you will also get a disabled Blue Parking Badge. These forms are lengthy and if you find them daunting or difficult do not hesitate in seeking advice either from Disability Rights Agency or Citizen's Advice etc. It is worth applying and even asking for a review if you are turned down initially. Your child has Perthes and has mobility problems because of it. We feel if one child gets it then all Perthes children should even if only for a limited time. This condition is verified by a GP/Consultant/Physiotherapist/X -rays. You must always ask yourself if all you do for your Perthes child is the same, as you would need to do for a fit and active child of the same age.

We welcome any parent/carer who has a child or was a child with Perthes. We would like to

Share your experiences good or bad with us to enable us to provide others with a better

Understanding of this disease. For many it is a 'hidden disease'.

We would be particularly interested in any research into Perthes.

      E-mail  ............ parentsofperthes@audi44.karoo.co.uk
                 

Links to other sites

          We highly recommend viewing these sites, particularly the first four
 

               Barbara Kelly's excellent online support group. See You there!    

http://www.maxpages.com/lpsupportgroup

http://www.liv.ac.uk/HumanAnatomy/phd/research/perthes/perthpd.html
 

  http://www.orthoseek.com/articles/perthes.html

Other links( not perthes related).

            http://www.bbc.co.uk/cbbc

            http://www.astromag.co.uk

            http://www.google.com  A good search engine, no frills and quick.
 
 
 
 
 

Health message boards on:
http://www.healthboards.com
http://www.healthboards.com/rare-disorders/3.html
 

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Updated June 1st 2005

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