Daughters perthes seems to be getting worse - what to do?

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hi, my daughter is now 5 and has had a limp for almost 2 yrs now. eventually the doctors have listened to me and she was diagnosed with perthes disease in june09. we were told to help her with swimming and cycling and to restrict impact excersize. her limp seems to be getting much worse though she struggles with stairs and everyday walking and sitting now. i have kept ringing the hospital to get her another appointment as she is not meant to be seen until october and am still waiting to hear about this. i feel like she is living off calpol and ibuprofen and i just don't know what to do anymore. can anyone offer advice on how long this is going to go on and for how long she will be in pain for. thanks

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  • Posted

    Hi,

    I am a 45 year old male who has suffered from Perthies since I was 7 and in January this year had a full Hip and Socket Replacement, which I have to say has been very successful smile.

    Firstly I am sorry to hear about your daughter being diagnosed with Perthies, it is upsetting and frustrating I know, but the fact is you must now chase regular doctor visits just to keep an eye on the progression. I would insist on xrays every quarter. What you have been told so far is correct, Swimming / horse riding / cycling are all good excersise's with limited pressure to the hip/s. Unfortunately I am not aware of any other medication that can ease the pain apart from what you have mentioned. Its very difficult to say how long the pain is going to go on for, Perhies is for life, but having said that, I was diagnosed at 7, had plaster casts on my legs, wore calipers for 2 years and spent time in a wheelchair. But from the age of around 11, I led a more that normal life right up until I was 42, which was great. So all is not lost smile. Keep your chin up.

    At your daughters age, her bones are still forming, thats why its very important to monitor and have regular Xrays to keep tabs and the doctors updated.

    I wish you and your daughter all the very best - Your not on your own out there and there is always people who are prepared to talk, help or offer advice.

    Sorry I can not offer any more advice, but if you have any more questions this site is pretty good for replies.

    Take Care

    Shaun

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  • Posted

    Go back to your G.P. with her, that is no quality of life for a child living on pain killers. I Know exactly what she is going through as i'm a sufferer of the disease. I was diagnosed at 7yrs old. i remember my mum often calling the G.P. to help speed up things. also when i was discharged from Booth Hall children's hospital for the first time they give my mum a direct number to the ward so if there was problems again i was auto admitted.

    The N.H.S. today what can i say................. I still have problems and feel fobbed off by them when i go.

    Keep on at your doctor and your local walk in centre.

    Best of Luck with your little girl.....

    Lyndon.

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  • Posted

    Hey,

    I have perthes disease aswell and unlike most people your going to talk to, i'm female, it's some stupid statistic of 8 of 10 case are male, but thats irrelivant.

    untill about 2 months ago i was on a lot of pills, Tramadol 4 times a day, naproxine 2 a day and amatryplin (which i'm still on) 3 times a day, none of which have much affect. But i'm stuck in a flair, where all of the mucels in the hip area are unbearably painful, before this (last year) it wasn't that bad, ok it hurt when i over exercise.

    Basically theres no telling how long she's gonna be in pain, and if she goes through a flair like me, theres no telling when it's gonna stop but there are gon na be days when she can't walk, and days when she can walk for miles, there are going to be days when she is in to pain and days when she's crying it hurts so much, i've been in pain that i actually shake, it can get that bad. But everyone is different, it may get a lot better, i'm not a sucess case, the surgey is diffrenet then when i had it in 1998, the standereds have improved, the dr.'s now believe that they may of touched/ knocked a nerve in surgery, which is why i'm i n the flair.

    anyway, any thing you wanna talk about feel free

    Sapphire

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  • Posted

    My son is 9 and was diagnosed last year - I was told to minimize his weight bearing and then at his next check up was told he was on the road to recovery and he could start P.E. again - however his walking and pain said different so I googled the local Orthopeadic hospital and found out the name of a specialist - I then got my GP to refer us - good job I did as my son needs surgery and as everyone knows with perthers the better the prognosis which depends on age - as it turned out the previous doctor gave completely the wrong advice and my son should have been in a cast several months before because of this he has a very long road in front of him.

    Listen to your own instincts where your child is concerned and seek a second opinion if you are not happy.

    As for pain my son finds that rest is best - I only try and give him pain relief if he is in agony so he does not get used to it - but your GP is a good one to talk to about pain relief.

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  • Posted

    my 4 year old daughter was diagnosed with perthes in july.after visits to the doctors and the hospital were i am sure they thought we were making her limping and pain up we decided we had to pay for private treatment to find out what was wrong with our little girl.thank god we did.molly had made good progress on her last xray but now winters here she seems to be struggling with walking more on the other hand if she sits too long she limps.its a no win situation and noone can give any answers.its a struggle to get every hospital visit i feel like noone knows about perthes so they dont care.
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  • Posted

    Hello,

    my son is now 11 and when he was 3 and a half they diagnostic perthies.

    He was in great pain and could barely walk. When the doctor told me : come back after 6 months I decided not to accept that answer. I search on the internet for a good doctor and thanks to other patients I got in contact with a doctor that treats several patients a year. An expert in Perthies. His advice was : to stop walking immediately. To make sure to remove the tax on the femurhead. So he had to go in a wheel chair at once. He wasn't allowed to do any sports accept swimming and riding his bike. He wasn't allowed to go upstairs / downstairs. So we had to carry him every day and morning. It was a difficult treatment as wel physically as mentally. And putting your child in a wheel chair was very difficult but I really noticed that this doctor knew that he spoke from experience. And my son still needed a lot of painkillers. As long as the bone was breaking down and afterwards building up he was in great pain. It may be stupid to say but his painlevel got higher and higher. Thanks to the rest in his wheel chair he needed less painkillers.

    My advice to you : go and search a good doctor. It will make a huge difference.

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  • Posted

    Hello,

    I am 21yr old male and have suffered from the disease since the age of 6. At first like yourself was not looked at properly by doctors and fobbed off so to speak. Eventually we went for xrays and it here they then realised that i had perthes i after going in for xrays - at this point the disease had caused irrverseable damage to my hip bone as the blood vessels had died and therefore the bone had began to soften. Lucky the blood vessels seemed to grow back and i was pain free but the damage had been done ristricting movement significantly in my hip joint and causing pain after impact sports. Unforunatley the disease then spread into my left leg but i was straight away took in for an \"exploring\" operation were they had a look around. I was then told i needed surgery i had 6 metal plates inserted to my left thigh and hip and then was in plaster cast for 2months and then wheel chair and crutchers after this. The plates were left in for 1 year and then removed. This operation was successful and even through i had restricted movement was pain free. Later on down the years when i was 18 the disease flared up again in my right leg - i went back to the hospital and i was told my hips \"wern't normal\" and that there was nto much they could do to improve the situation apart from hip replacements. As these only last about 20-25 years it could have left me wheel chair bound at the age of 60! So instead i sought private health care and the options were endless - i had a number of steroid injections into the hip joint these were very painfull but left me pain free for a number of months. the time it lasted got shorter and shorter though. So i ended up having surgery again having my leg broken and restructured so that the hip joint would be more stable and protected from fracture. My legs are both feeling good now apart from and few aches and pains.

    I would have to say through its so important that you really get on the doctors case and try and get referred as the longer its left untrated the more damage it could potentially do. if your not getting the treatment you want with the NHS go else where as you seem to get alot better care and expertise.

    Hope this helps!!

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  • Posted

    hi my name is chris and i am from derbyshire,i am 41 yrs old when i was 7 i was suffering from severe knee and hip pains,on which my mum took me to the doctors,luckly my doctor knew straight away what it was,and by the end of the day i was in the hospital,it took them 7yrs to sort it out so dont let it get you down,and just keep dealing with it best you can and you will sort it out good luck to all of you out there that are suffering from this
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  • Posted

    hi my son was diagnosed with perthes when he was 4 he is now 11 and still suffers fully understand regards the medication as my son has lost several adult teeth due to this he also has really bad days ie stairs sitting i have to put him on bed rest other than that it is traction in hospital i also suffered with this from the age of 4 but was in callipers for seven years i am now 34 but still suffer with clicky hip limited rotation and pain i think you should ring the consultants secretary and explain whats goin on and strees you feel unable to wait until the clinic appointment or take her to accident and emmergency explain she is diagnosed with perthes and is in pain hopefully the peadiatrician you see will get ypur appointment forwarded to an earlier date goodluck
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  • Posted

    [quote:3f867ce04b=\"sandiv\"]hi, my daughter is now 5 and has had a limp for almost 2 yrs now. eventually the doctors have listened to me and she was diagnosed with perthes disease in june09. we were told to help her with swimming and cycling and to restrict impact excersize. her limp seems to be getting much worse though she struggles with stairs and everyday walking and sitting now. i have kept ringing the hospital to get her another appointment as she is not meant to be seen until october and am still waiting to hear about this. i feel like she is living off calpol and ibuprofen and i just don't know what to do anymore. can anyone offer advice on how long this is going to go on and for how long she will be in pain for. thanks[/quote:3f867ce04b]

    hi there, bout week ago my 10 yr old son was diagnosed with perthes disease i havent been told much just its severe on the left hip and starting in the right they have given him crutches to get on and limit activity but like you i feel all hes living off is calpol and ibuprofen i dont know what to do or where to go with this i feel in limbo land so any advice or ne thing wood be fantastic

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  • Posted

    hi, my names Damian and i was diagnosed with Perthes Disease at 15 (late i know but hospital missed it ( i know bad in it)) i am now 24 and currently waiting for a full hip replacement sad nt tryng to worry you im in this position as the hospital i went to at 6/7 ish diagnosed me with growing pains not Perthes!!...saying that upto 6 months back i have been ok ish, i have special designed trainers to counter balance my leg decrepency (left leg is 3 quarters shorter than right) it is now horrible to live with and im looking forward to my operation.. i would say my case is worse scenario and i have done ok with it so for your daughters perthes to have been found earlir than mine she will be fine and have all the best medication i never had available to her.. i cant really say how long she may suffer this pain under medication as its diffrent to most ppl i just hope she doesnt go thru all i am at the moment i wish her and you for that matter the best of luck in the near future
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