Forums

Welcome Guest

Pages: 1 2 3 4
Re: New to Perthes!!
GuestPostJanuary 30, 2012, 22:01
Newbie
Posts: 1
Registered:

Very Hot topicRe: New to Perthes!!

Hi,
My name is Kirsten and I found out on Saturday that my son Alexander has perthes and am still a bit shell shocked. Reading what you have said has been helping me with my limited but quickly growing understanding of the disease. My son is 4 (5 in April) and has been limping on and off since October. I mistakenly assumed this was growing pains linked to hyper mobility that runs in the family. My GP also told me this but begrudgingly referred him anyway so I was expecting the same diagnosis from the surgeon. He has been told to stop all exercise, school p.e. and refrain from running. I found I am constantly watching him reminding him to sit down. Now that I have read that movement can restore the blood flow I think I will be less paranoid. Alex was off school today so going in tomorrow to discuss how it can be managed in school. He has lost less than 50% of the ball of his right hip and the alignment is still good. I am not sure if he is ok to stand for long periods? Or if crawling pushing cars around is bad?

lisaPostJanuary 30, 2012, 23:14
lisa
Administrator
Posts: 86
Registered:
September 7, 2011, 13:46
Very Hot topicRe: New to Perthes!!

Hi Kirsten 🙂 My name is Lisa and I have worked with families who have children with Perthes disease for a long time, the first thing I want to say is that it's good news that your child is so young as regrowth happens much faster. Perthes isn't really a disease - it's a condition that affects growing children but it's not very well understood and a lot of rubbish is posted on the internet, some by well meaning people, some of whom only have experience of their own child and some who read a research paper and believe it to be true. The thing is every child is different, and there is not a "one size fits all" treatment or cure. Although the x-ray shows half the head to be gone, there is still an underlying cartilaginous head and as long as that stays round the head will grow back in a round shape. Any treatment is designed to protect that softer cartilaginous head, hence no PE or impact sports but yes he can stand although he may get tired and he can also crawl around with his cars without hurting himself. He needs to be treated as normally as possible, but he may get tired if he walks any distance in which case you can use a buggy. Perthes disease will run it's course no matter what you do, so treatment is not a cure but a way of managing the condition to prevent damage which may cause osteoarthritis of the hip as an adult. Hope this helps. 🙂

GuestPostFebruary 1, 2012, 17:33
Newbie
Posts: 3
Registered:

Very Hot topicRe: New to Perthes!!

Hi All, my name is Sophia and our son Richard was diagnosed with Perthes August 2011(then 4 years old,now 5) after getting very lame over a two week period, wrongly diagnosed as ligament damage behind the knee from our GP, however that was due to referred pain.After a huge downward spiral we took Rich to see our physio whom immediately suggested A&E for xrays...perthes diagnosed!!! THe initial shock and pain was for us, not so for Richard. The doctors were reluctant to intervene so early, which when you look at the options they take , I was happy to go with it.However was totally frustrated and angry at not being given more information.We actually approached private doctors for answers but then realised its a time thing, nobody can rush it. It is incredibly frustrating to see him lame one day, and then good the next. We too, have been told to stop him from running etc, however he is 5 years old and that is impossible. We had our first physio app in Dec and she was amazed at his muscle definition and rotation, I therefore have been very reluctant to stop him in most activities as we would prefer a happy little boy who enjoys his childhood, than one that is bitter and angry. His pain threshold is, Im told, remarkable, he rides a bike, suppose to be good for them, rides his pony, a good position for femoral head to be in, swims as much as poss. Richard is coping very well on only one dose of nurofen before school and a calpol if PE DAY. The one thing that really hurts him is jumping, whether at a party doing musical bumps or trampoline...a big NO NO, but luckily Rich has learnt his own pain bearing, which I think is very important for him, we dont have to argue and fight now.Reading a lot of peoples stories scares me and Im just waiting for the day to come that we, too, are going to deal with a whole lot worse,but I was told very early in diagnosis that the initial pain(breakdown of head) for them is the worse, and if crutches etc can get them through that then we are lucky. I always feel incredibly deflated after seeing Docs and xrays every two months but we are trying to be really positive, after all, its not life threatening, just life changing.I know that seems harsh but its what I keep drilling into myself.Wishing Ben all the best x x x

lisaPostFebruary 1, 2012, 19:17
lisa
Administrator
Posts: 86
Registered:
September 7, 2011, 13:46
Very Hot topicRe: New to Perthes!!

This is just a general remark and not directed at anyone here but I would just like to say, I'm always upset when I hear that a parent is scared by stories read on the internet, because although there is no way I can prove it, for every parent who has a bad experience there are hundreds who don't. I can honestly say the same about the children, hundreds of children have no pain and many people have Perthes without even knowing it. They come to us as adults astounded to have learnt that they had Perthes as a child, when it is discovered in adulthood, some as late as 60 and 70 years old having had hip x-rays with arthritis (which most of us get anyway). No, Perthes isn't life threatening and although it can be life changing for a while, it's not forever!

I know it's hard, I had Perthes myself, and I also have a son with M.E.D. - but you will get through it, stay positive, think about all those who have got better and gone on to become professionals in all walks of life. Sportsmen, (including professional footballers), marathon runners, actors, police, soldiers, sailors and airmen and women.

GuestPostFebruary 7, 2012, 18:50
Newbie
Posts: 6
Registered:

Very Hot topicRe: New to Perthes!!

Hello to everybody my name is Alison Barefoot and my son Charles (6 years old) was diagnosed with Perthes Disease on Thursday 2nd February 2012 after two weeks of displaying a limp. As no doubt everyone on this forum has been through both my husband Gareth and I and all our family our somewhat shocked, worried, confused and emotional. We have our first consultation with Mr Dempster at Frimley Park Hospital in 3 weeks after being diagnosed by him through A&E on the above date. We have read everything and nearly scared ourselves to death with all the sad stories and images, but realise there must be positives and hope along the way. Charles can still hobble about albeit he is now using crutches at school to help keep the weight off his left leg. We are trying to keep the mobility in his joint with warm baths and gentle mobility exercises but really dont know whats best at this stage (rest or movement or a combination of both). We have stumbled across your wonderful site and hope to be able learn, share and discuss our challenges and successes with all ( if we can both stop crying!). Anyway we would welcome any input or words of advice as real newbies to this new world

lisaPostFebruary 7, 2012, 20:42
lisa
Administrator
Posts: 86
Registered:
September 7, 2011, 13:46
Very Hot topicRe: New to Perthes!!

Hello Alison, my name is Lisa and I have had personal experience of Perthes as well as having worked for Perthes Association for many years, I know how devastated you must feel but this is partly because you have never heard of Perthes (disease) before. You are quite local to the office so if you wanted to give me a call or even pop in for a chat, I could talk you through it. Try to avoid reading too much on the internet and remember that there are over 6000 families registered with the Perthes Association but only about a thousand are still members, this is because their children are better and they no longer need us! It's good news 🙂 Look on our stories page and you will find lots of happy endings as you will in our newsletters and when you meet others at events, our next one is the first week in July in East Sussex ! It's not all doom and gloom, you will get through this, stay positive, don't listen to negativity, you are in good hands 🙂

GuestPostFebruary 7, 2012, 21:14
Newbie
Posts: 6
Registered:

Very Hot topicRe: New to Perthes!!

Lisa
Many thanks for yor kind words and support. It is encouraging to know their our people out there with first hand experience and advice. No doubt onevday we will be able to offer such help to others. We shop frequently in Guildford so maybe soon we will arrange a time to meet for a coffee and chat. I will follow the forums and join in where appropriate and hopefully be able to add some value and support to the Association in other ways too.

lisaPostFebruary 7, 2012, 22:53
lisa
Administrator
Posts: 86
Registered:
September 7, 2011, 13:46
Very Hot topicRe: New to Perthes!!

Thanks Alison - I don't go into Guildford much these days apart from the office, but you can always join me for a coffee there - all comments are welcome 🙂

GuestPostFebruary 8, 2012, 16:39
Newbie
Posts: 6
Registered:

Very Hot topicRe: New to Perthes!!

Hi Lisa
Just received consultant appointment through the post for Monday 13th February - pleased it has come through so quick. Having just been diagnosed last week we are unsure what to expect from this appointment and what it entails. If anybody can shed light on what to expect we would be very grateful. Many thanks Alison

GuestPostFebruary 8, 2012, 21:49
Advanced
Posts: 55
Registered:

Very Hot topicRe: New to Perthes!!

Hi Alison, I'm Debbie and my son Jack is 6 and was diagnosed with Perthes on the 1st November 2011 after a limp of two weeks and was diagnosed at A&E. He was seen on the 10th November and given broomstick plaster casts for night time wear and crutches for school. We too were devastated and read some awful stories but four months down the line have adjusted quite well. Jack hasn't missed a day of school and although he cannot join in with some activities or PE he's coped really well. We were told that swimming was an excellent activity and he has two lessons a week which he loves. His limp comes and goes but at the moment its hardly noticeable and he's having very little discomfort. His next appointment is on the 23rd February so I guess we will know more then and he will have more x-rays to see what's going on. Take care.

Pages: 1 2 3 4
Mingle Forum by Cartpauj | Version: 1.1.0beta | Page loaded in: 0.098 seconds.