Latest zForum Topics

To parents of children with perthes

Fri, 30 Jul 2010 08:34:00 GMT

Hi,

We live in Coventry and Thomas who is 8 in november has perthes in his left hip. We would love to chat to anyone who lives local and possibly meet up

surgery options

Fri, 30 Jul 2010 08:23:00 GMT

Hi,
My son Thomas will be 8 in november and was diagnosed with Perthes in his left hip in May. He is currently in a wheelchair as he has been told to put no weight on his left leg at all. Last Tuesday we saw our consultant and he is going to do the exploratory operation on Tom in September where they inject the dye into his hip. From this he will decide on whether to operate or not.
Like you we are very unsure about what is happening and what operation they will do. Any comments on these procedures or explainations would be great.

What questions should I be asking

Mon, 21 Jun 2010 18:20:00 GMT

Hello Rose
What is it that you would like to know, I'll try and answer any question possible. I've been your son, I too was diagnosed at the age of 2 years old (albeit back in 1973!) Just post on here and I'll try and do my best. If in any doubt, do get in touch with your GP and consultant. Hope I can help a little.
My son was diagnosed 6 weeks ago at the the age of 2 and i was just wonderin if any one had any advice[/quote]

Perthes in both hips

Wed, 09 Jun 2010 11:13:00 GMT

Dear C Winson
Sounds like Tilly is a brave little girl. I wish her all the best. The bonus for you is that I've heard that Stoke Mandeville Hospital has some experienced consultants there. They should help Tilly well. If you have a look around the forum, I have made a couple of posts about some of the experiences, I have with Bi-Lateral Perthes and the after effects. I was originally diagnosed with Bi-Lateral Perthes in 1973 aged 2. Keep Tilly away from high impact sports and exercise as much as you can, this will benefit her later on in life. It's great that she is learning the violin, this is certainly something that this dreadful condition can't stop. Keep encouraging her to achieve things that are not high impact on her skeleton, encourage her to do things that require more mental stimulation. Good luck and all the best to Tilly. Keep that smiling going.

My 7 year old son has Perthes

Wed, 09 Jun 2010 10:53:00 GMT

Hello Amadsen
It's good to hear that your son, Josh is feeling a little more comfortable. Josh seems to have had a very similar operational event as I had as a child. I too, had the plate and screws once, after the operation to try and reshape the surface of the femur. However, this did encourage the hip joint to settle down pain wise, but unfortunately, it doesn't return to a nice spherical shape femur. What is important for the hip joint is that the space between the femur and hip socket is preserved. As long as this stays preserved then the joint should remain stable. I was diagnosed with Bi-Lateral Perthes in 1973 at the age of 2. I have been through many experiences with this life controlling condition.
Try to keep Josh from doing too many high impact activities as you can, it's because he'll need all the years of preservation as he can get, for later on in his years. You see, you mentioned he has a limp and it is good that he is coping with that, but what can happen (in fact has happen to me), the years of walking with a limp, puts pressure elsewhere on the skeleton, primarily the lower spine. Walking for years with an unusual gate can put extra wear on this section of the spine (as indeed it has for me) So please try to encourage him to keep doing the lower impact exercise like the swimming and cycling, for future preservation.
I hope you don't mind me making a comment to your posting, and wish Josh and yourselves all the best.

Hi all,
Well it's been almost a year since my last posting and a lot has happened since then. Josh has had a relatively good year with limited pain. He still struggles with walking long distances as his leg gets very tired. His right leg is still considerably shorted and thinner than his left but we are hoping this will improve with time.
Last week Josh had his second surgery to remove the plate and screws from his femur. Amazingly, he was up walking around the same day. He is restricted from running, jumping etc for 4-6 weeks which is proving to be quite a challenge as he is a very energetic child. Swimming and Nintendo Wii have been wonderful to help release his abundance of evergy.
Whilst the past two years have been very challenging for our whole family we think we can finally see a happy ending. The main thing we must hope for now is that Josh's femoral head continues to grow back in a smooth spherical shape. Josh has adjusted extremely well to his limp even though he is unable to run properly and is often teased at school.
I wish all other families going through similar situations the best of luck for a positive future. [/quote]

After Perthes and Adulthood

Sat, 05 Jun 2010 17:41:00 GMT

This is my first ever post on this forum for the Perthes Organisation, so bear with me.
I've been a Bi-Lateral Perthes suffer as a child, but now an adult. I was first diagnosed in 1973 at the age of 2 years old. I've much experience with living with this condition and what can happen later in life. Unfortunately, after Perthes, comes Osteo-Arthritis. I have Osteo-Arthritis in my neck,spine, knees and right hip (left hip was replaced due to collapsing). My right hip has also now collapsed, but I'm holding off getting this replaced for as long as possible. My left hip is stable, but worn out nearly, again I'm trying to prolong a revision on this hip. I'm now a semi-wheelchair user, in severe pain and very disabled by the after effects of Perthes.
Try as much as you can to lead a normal life as possible for any child that is diagnosed with this condition. But, try also to encourage them to do more passive hobbies, play and exercise. I also suggest in the thought of preservation of the rest of the skeleton of the child's body, that they try not do sports, except swimming and cycling. The rest of the sports have far too much an impact on the skeleton. Try to bear in mind that the child will, without thinking about, compensate by walking and weight bearing, shift their weight to the side that is less painful. This is natural for the human body. But, this can in later life cause problems to the skeleton not effected by Perthes.
Try to encourage you child to do more with the mind, rather than what everyday children are doing, remember the impact through the skeleton when walking is a least double the body weight and running it is far greater (upto 10x body weight) of force.
As your child grows up, again try to encourage them to pursue a career that is not strenuous, it would be a real benefit later in life.
As for pain killers at other medication, there is a lot of things to bear in mind, one example that has happen to me is:- the long term use of NSAID's(non steroidal anti inflammatory drugs) i.e. Aspirin based have stripped my stomach lining and caused ulcerations to my stomach and lower duodenum. They have also caused very high blood pressure.
I'll try to add more experiences as I get time. I'll also try to answer other people who post on this forum any questions.

Adult sufferers

Sat, 05 Jun 2010 17:39:00 GMT

Help and advice from other parents -I am new to this

Tue, 03 Mar 2009 20:03:00 GMT

I would concur with what has been said elsewhere in these forums, that there seems to differing approaches to treatment from different consultants - here is our experience.

In November 2004, out of the blue, our son Tim, aged 4 years, had some pain in his right hip and leg and could only walk with a limp. After a period of investigation, including ultrasounds, he had an x-ray and was diagnosed with Perthes in early 2005. We had never heard of Perthes before. Since then, Tim’s condition has been monitored by an Orthopaedic Paediatric Consultant and a physiotherapist.

During 2005 he had phases of being unable to bear any weight on his right foot and for a few weeks used crutches. His hip was often quite painful and he frequently walked and ran with a limp. Some weeks Tim needed daily pain-killers and other weeks he coped without. He saw the Consultant and the physiotherapist regularly. The physiotherapist taught Mum the exercises that Tim needed to do daily to improve the mobility of his hip joint.

Towards the end of 2005, Tim’s x-ray showed the first signs that the top of the femur was growing back again. Throughout 2006 and 2007 Tim fortunately had few episodes when his hip was painful. The most recent x-ray, taken in January 2008, shows things progressing well. He now seldom experiences any pain and the daily exercises became every other day and then once a week.

The consultant had told us from the outset that Tim was not allowed to jump from any height onto hard surfaces, nor was he allowed to go on trampolines or bouncy castles. Apart from those restrictions, he has throughout advised us that physical activity should be ‘self-limiting’. That means that Tim could run, swim, or do any sport so long as he felt he could do it. The physiotherapist says that Tim is the most sporty boy on her books and, apart from when he was really in too much pain, he has continued to be as physically active as he possibly can, playing football at every opportunity, as well as cricket.

On December 31st 2008, we saw the Consultant for what had become the annual visit and x-ray. The shape of the ‘ball’ in the hip joint was good, though it will always be more of a rugby ball than a football. His flexibility was assessed as good too, and to our delight, the Consultant signed him off. Tim still sees the physio. every couple of months to monitor the mobility of his hip. We have always tried to be positive, stuck fanatically to doing the exercises and tried not to worry when he was playing football, however it was still a great relief to be ‘signed off’.

Tim’s Dad ran the London Marathon to raise money for the Perthes charity and we make a point of explaining the condition to people, whenever the opportunity arises.

AFTER PERTHES - what now?

Mon, 06 Oct 2008 23:26:00 GMT

This forum has been opened for the many adults who are looking for someone who also had Perthes disease as a child, we hope you will find it useful

We have a lot of enquiries from people who had Perthes disease as a child who would like to chat to others in similar circumstances. The Newsletter is one place where we publish letters asking for contacts through the membership, but if you want to leave a message here and email us at admin@perthes.org.uk to ensure we have contact details we can forward any mail we receive for you.

Lisa

My experiences about Perthes disease.

Mon, 06 Oct 2008 14:15:00 GMT

Thank you for your story Mikel, I am sure it will encourage others who are just starting with Perthes

CONCERNED PARENTS NEED ADVICE

Fri, 19 Sep 2008 16:38:00 GMT

Hi,

I am sorry to hear your news, it might be best for you to give me a call on the helpline so that we can talk about this. I would also advise you to take Matty back to the hospital as soon as possible and to stop all contact sports until you have been given the go ahead by his consultant.

Regards
Lisa Grant

Body Brace - any ideas/knowledge?

Sat, 02 Aug 2008 21:02:00 GMT

Hi I'm new to the site but was woundering how you got on with Davids body brace? Our son Jack was diagnoised with perthes in September 2005 at 5yrs old. We lived in Ireland then but luckily dealt with an orthapedic hospital in Croom co. Limerick and our consultant was very passionate and knowledgable about the disease. Jacks treatment was 6wks in a cast from chest to ankles i think its called a splica cast here. Then he wore a body brace for 18 months. Jacks brace was worn under his clothes and it was worn 24/7. The brace was made for him in Dublin and it came around his middle and down his left leg with a pivet where his hip was and set to a percise angle, all fastenings were velcro. With this brace he did everything anyother child could do, run, ride his bike, kick a ball etc.
Now we live back in the uk and we still go for 6 monthly x-rays and i am pleased to say Jacks left ball joint is looking great! hope this helps.

Sleep disturbance

Thu, 01 May 2008 10:36:00 GMT

My seven year old son was diagnosed back in December and had an operation at Southampton General in January. He is allowed to walk now but not run or jump so has to stay in at playtime. His behaviour has got a lot worse recently - since he's been allowed to walk again - and he seems to be taking his frustration out on his younger brother. Has anyone else found this to be the case? Has anyone found that counselling helps? I would love to hear about anyone else's experience.

Helen

PLEASE CONTACT THE OFFICE IF YOU CANNOT POST ON THIS FORUM

Fri, 15 Feb 2008 10:42:00 GMT

Hi,

Please remember that if you want to use the forum you need a password and user name, this can be sent on request to admin@perthes.org.uk

daughter just been diagnosed

Mon, 19 Nov 2007 14:41:00 GMT

Angela
Hope this will help. My son Cameron aged 7 was diagnosed with perthes at the end of August and has now been pain free for approx 3 or 4 weeks. He has spent all of that time on crutches. His limp seems much better as well. Hope you get on ok. If your daughter wants an email buddy or pen pal sure Cameron would chat.
Good luck
Jude

Games

Wed, 07 Nov 2007 09:52:00 GMT

Hi, sorry, there are two profiles, one for the main site and one for Forums .. Click on the Forum tab, then hit "My Profile" on the portlet on the right of the screen.

If you load your picture in here it will appear on forum posts ..

WELCOME - MEMBERS PLEASE USE THIS FORUM

Sun, 04 Nov 2007 13:40:00 GMT

Kathy, you are very welcome to join us

Lisa,
I have never done a forum or file before & am unfamiliar with the process, so bare with me. Is this membership in the UK because I am from America. I had a very difficult time finding this type of site in the US, so I became of member of this one.
Kathy[/quote]

Display not quite right

Fri, 02 Nov 2007 09:38:00 GMT

In this instance, try holding down the shift key and while it's held down, click on the browser's page reload or refresh button. If this has no effect, try the sale with the 'Ctrl' key.

Your browser will attempt to minimise the amount it downloads from the Internet and as you move between pages on the site, after the first page it will try to limit itself to downloading the page only, using "style" information retrieved when it looked at the first page on the site.

It can keep this information for days and sometimes longer (!)

If we change part of the site, we often change the style information, so for example you might find the new "Games" button makes the buttons "touch" the heading area slightly. If you wait a couple of days, this will correct itself, or you can correct it now using the method described above.

Note that this is general browser information and will apply to all browsers and all websites, however you will only see the issue when websites "change".

Hints and Tips

Fri, 02 Nov 2007 07:09:00 GMT

Hi,

Assuming you are using Firefox, try clicking on the orange logo at the bottom of the "Latest Pages" section to the right.

Now click on "Subscribe to live bookmarks".

This should add an Icon to the top of your screen which should automatically provide links to all the latest postings on this forums.

There are other ways of using this icon using RSS feeders, but Firefox is probably the easiest method.