my 5 year old son suffers with perthes and i am very con...

Both my sons suffered from Perthes disease. My older son, Larry, was taken into hospital in 1972, when he was 5 years old. He spent 9 months on his back fixed to a metal frame from shoulder to feet, a further 9 months in plaster from thighs to ankles and then 6 months in splints. After this treatment he recovered well, but suffered if he had to walk far. My younger son, Jim, was also 5 when Perthes disease was diagnosed in 1977. This time, however, through a friend who had knowledge of this condition Jim went to another Hospital where he spent 5 days being fitted with, and trained to wear, hinged Toronto Splints which, with the help of crutches, allowed Jim to leave hospital and carry on life almost as normal for the next 9 months, after which the splints were removed and Jim's treatment finished. Jim has not had any adverse reaction and shows no sign of any problem. Larry, who unfortunately died two years ago (his death not related to Perthe disease) had a much tougher treatment than Jim, with poorer recovery, and I have no doubt that the Toronto splints are a big improvement over the plaster cast treatment. Now, almost 30 years later there are probably even better treatments, but from my experience the treatment given to Larry was much more severe and limiting than neccessary.

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my son is nearly 9 and has perthes-it was diagnosed nearly a year a go and he has just had surgery for it (2 months a go). the specialist we saw (which,by the way was the fourth one we saw as a lot of specialist in this field are quite ignorant to perthes once treatment is needed) said that braces and plaster aren't used for this disease any longer. thats the old fashioned way so maybe you should get ANOTHER opinion.we were told that perthes is a very complex disease and no two people have the same treatment.we were lucky that the specialists we saw were honest enough to say that they didn't know enough about it and referred us else where til we got the surgeon we are with now who is wonderful. you'll know when you find the right one so keep going

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I had pethes when i was 6 , ihad a brace on just the effected leg my callipers actually bent at the knee i was the first person to use this treatment . 2 weeks in traction (horrid to a 6 year old,) then 18 months in the callipers and 6 months in a wheelchair .

thank god that it bent at the knee i couldnt cope with the plaster and the bar , im know 26 and no problems with my legs but im waiting for the day that the dreaded artheritas pops up....:D:

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hi my daughter was diagnosed last october.we were given crutches and a wheelchair and told to make sure no weight bare atall.we are finding it hard you cant stop a little girl from walking.her hip has got a lot worse so they are now going to operate.find a support group near your area and just be strong because its hard for you and your child to cope with.do what u thinks best good luckxxxx

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Hi there dont be surprised 1 doctor doesnt want to do anythging as i was diagnosed 27 years ago when i was 6 yrs old and i am left with 1 leg a full inch shorter than the other i hate it so much i am really really aware of it at all times when i am walking. If your son has a chance of not having a difference in lenghth of leg then i would have the op. If given the chance to relive my life i would sacrifice 3/4 yrs of school for a normal life of having both legs the same length. Dont take this thye wrong way i have had an active life and love football wa pretty good when iwas a teenager maybe without the disease i may have fulfilled some kind of life out of it and i still run regulary but deep down i wud have liked to know wat it feels like to walk without a limp.

Hope i havnt spilled to much out just that i dont talk about this to anyone and it is a scar that cant be seen inside me.

I feel for any pain you as parents and your son are goin through as i to have experienced and will continue, i wish you hopefully can find good health and happiness 4 your son.

Mark Fairlie

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my 5 year old son has just been diagnosed with perthes disease and im so worried about it.It is been observed every 6 months through x-rays at our local hospital,but im worried it will get worse.does anyone out there have more they can tell me,as i have only read what is on the internet about the disease,and looked at pictures.i can imagine what everyone else is going through,as i was gutted when i was told my son had it.I also asked was it family heritanted

and i was told that they cannot say for sure about it,also did he have it when he was born??.If anyone has more information about this disease reply please.

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I want to ask you what has happened since then, what treatment was given, my three year old has been diagnosed ,i am very worried although my brother had perthes 20 years ago the treatment was not good, what do they do now??

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I have a 4 yr. old boy with Perthes. It was diagnosed a year ago. So far the ortho. is just watching it through x-rays every 3 months. He has whole head involvement on the right hip. They are watching a spot on the left hip that might also have perthes. He is in pain every day. We were told to just keep using motrin for the pain. Our ortho. doesn't believe in braces or therapy. He walks with a limp kinda using his tip toe. I would like to talk to other parents of children with perthes to see what their dr. is doing for their child. It breaks my heart watching our 4yr. old walk in pain. Please email me back if you are interested. Thanks! Debbie Waskevich

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My son is also having his perthes watched through x-rays, we have only been back once and are due again at the end of october,I feel I am wishing the time away,his condition has not gotten any worse which is good but is in both hips.He did limp for a short while but seems to rest up himself after nursery,at first i thought he was just tired because he had just started nursery but I now think it is his body telling him have a rest.I am worried about what will hapen next, and hope it either stays the same or gets better with the next x-ray .I am not a stranger to perthes my brother had it when he was nine and spent a year in hospital on a frame and then had a calliper for a while, he is now 35 and has a very slight limp but has no other problems as i was only young when he was away from home we never talked about it until now with my sons situation and realise what he went through and what was on his mind and also what my parents went through and I dont know how they managed to cope,I feel this is stressfull enough at this stage but know as a mother you battle on for your childrens sake.

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