Two kids under 5 with perthes

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

We were told that our son has perthes in his left hip just after his 4th birthday. We had never heard of this before, but were glad that we knew what was wrong with him. From he was about 2 he kept falling, having a pain in his leg and walking with a limp. Every time I took him to the doctors or our local hospital I was sent away being told it was growing pains. In the end I put a complante in the doctors who then send my son to our local hospital for a total checkup. We were told it was perthes disease it was very seveare and we were refeard to a hospital in the city. His doctor sees him every 3 months and his whole ball is near gone we have to keep him of any heavy impack which is hard to do. NOW our little girl who is 2and a half is showing sines of perthes in her right leg. I brought her in the summer to the gp who sent her for an x-ray which showed everything was ok. It seems to be history repeating it self I am running her to the hospital who will nor take an x-ray even thow the gp sent her their for a full checkup. They told me that children under 8 do not get perthes and when I said about my son having it I was told It was rare. I know that this is not true. Could anyone please tell me if 2 kids in the same family can have this, or what I should do next. Thank you.

0 likes, 10 replies

Report

10 Replies

  • Posted

    Hi Kelly Anne

    Yes, sad it seems correct that 2 children from the same family can develop perthes.

    I have bi-lateral perthes (discovered when I was 7year old, now I am 41 years old) and my older half sister has perthes in her right leg (did not now she had it until about 10 years ago, she is about 50 years old).

    My half sister was the younger of my mother’s first marriage and I was the second of my mother’s second marriage suggesting perthes came from my mother’s side of the family.

    I am not aware of anyone else with 2 siblings having perthes apart from you and me.

    Plese have a look at my previous bi-lateral perthes about being informed will help you deal with GP's and Consultants.

    Hope this helps

    Gary

    Report
  • Posted

    hi kelly anne

    i had perthes about 30 years ago and had to have a plate in my hip which was removed 3 years later my older brother had the condition before me but he had to wear a leg brace he has totally recoverd from the condition and works as a builder , i also work as a builder and have only had the occasional pain in my hip after i have lifted heavy loads i know that in a few years i will need a hip replacement but on the whole my brother and i have lived normal lives i hope my coments have eased your worry

    ps the doctors told my mum that my brother had growing pains and i was play acting

    Report
  • Posted

    Hi, I too had Perthes but was also told it was growing pains so it went undiagnosed until i was 13. Perthes is not supposed to be hereditary but my father also had Perthes at the age of 3 so it can occur in young children

    JO

    Report
  • Posted

    Hi all,

    just found this site by accident, very interesting.

    just to let you all know, i have 2 boys who have perthes disease.

    I have 4 children, child 2 had it from 5 yrs old (he was missed diagnosed for a year and when they finally diagnosed him the pain was so bad and the femur head was in a bad way, he had it in 1 hip)and is now 17 and has restricted movement but still plays in goal and has had trials for bangor fc. after being told i was a neurotic mother my 3rd son was diagnosed with it in both hips and swaggered like john wayne! he was also 5 and is now 16.

    recently my daughter (child no.4) who is 13 has been complaining of pain in her hip!

    perthes disease is supposed to be non generic and non hereditary?

    when we saw our specialist he has never really come accross 2 in one family.

    since my boys have grown, i know of at least 3 other cases within a 4 mile radius of our home, which is in Llandudno in North Wales. Not too sure what this proves?

    The fact that jack russel dogs get it =slightly bemussed us! :o

    Report
  • Posted

    My son had Perthes when he was three years old and we were told to keep him off his feet for two years and to always dissuade him from wanting to join the forces. He's now 44 years old and he completed 22 years in the RAF so there is hope out there! The only trouble was keeping him off his feet for all that time! He's 44 years old now and so far he's not suffered from any side effects. Coincidentally my niece's youngest

    child who is now three years old is having investigations for suspected Perthes.

    Report
  • Posted

    I know this is an old post, but I just want to reassure people that Perthes is NOT hereditary, there is so much mis-information out there.  Children can have Perthes disease as young as 18 monthsand as old at 16 , but it's more ommon in the 4 - 8 year old age group.  2 children in the family can have it, but the child of an affected parent is no more at risk of having Perthes than any other child.  I have worked for Perthes Association for over 25 years, look them up on the web, there is lots of accurate and up-to-date information on there as well as links to other pages.
    Report
    • Posted

      While I have no medical training or background I would like to query the post from the Perthes Association suggesting a lack of a hereditary factor where Perthes is concerned. I had Perthes aged 8 (I am now 41), my maternal uncle had Perthes, my daughter and my niece had Perthes, each when aged 4, and my son (aged 6) has just been diagnosed with Perthes. Based what I have been told and on my grandfather's gait, I suspect he may also have had Perthes. I appreciate this is not sufficient to constitute a medical study on the point, but I am struggling to believe it is simply a remarkable coincidence. 

      Report
    • Posted

      I think as an association representing this disease to help people educate themselves about a rare disease such as LCPD you are doing a disservice to everyone by stating what you have. Orphan diseases like this don’t get the limelight that other diseases do and because of that they also don’t get the funding and research that other diseases do right? Considering that this specific disease is more so a tragedy to the child suffering and their parents it probably gets even less attention and funding. It’s my understanding that although in most cases it’s not been proven to be hereditary that their is also this finding: “Legg-Calve-Perthes disease (LCPD) is usually not caused by genetic factors (thus is usually not inherited ), but there are some cases where LCPD affects more than one family member. In a small percentage of these familial cases, changes or mutations in the COL2A1 gene have been found to cause LCPD. While I hope ,ost families never have to worry about their son or daughter having to struggle through what should be some of the most adventure filled days of their childhood to say that it is absolutely not hareditary to people who have suffered or are suffering through watching their babies go through the physical and psychological pain this disease causes is very concerning coming from you. My son was diagnosed with LCPD a couple years ago and the specialist we seen took one look at me asked a couple questions and said that they might have to do testing on me to see if I was the reason he has the disease. Which before even seeing thi doctor for the first time I suspected that I would probably be the cause having had a bone deficiency issue at birth myself and being only knee high to a grass hopper it’s easy to assume that my own difficulties might play a role in my sons lives. Now I am concerned that my youngest son might have the same disease especially considering Over the past couple weeks I feel like I am be Not thrown into a time warp of some sort and we are looking at his older brother complaining about his knee hurting and barely able to walk. I don’t think theirs enough information available or known about the disease to make such an absolute statement like you did. I apologize if I sound argumentative but stating such an absolute like that might cause someone to keep from sharing valuable information that might just help a family actually dealing with this debilitating disease. It could very well cause someone that thinks their child is suffering from this disease to think twice about seeking medical advice because they already have a child diagnosed with it and that is doing a disservice to everyone. 
      Report
  • Posted

    Yes two children in the same family can have perthes disease as my daughter was 4 when she was first diagnosed hers is in her left hip. Then my son started off with the same symptoms and dispite me going to the doctors and addressing my concerns we just got sent away it was only when he got admitted to hospital due to him not being able to walk then they sent him to a children's hospital were they confirmed that he had perthes disease in his right him and then a few months after I record the news that in fact he has got bilateral perthes disease which means he has it in both hips, he was two year old when he got diagnosed and he is five now and does suffer a lot and even now I have to fight to get him the help that he needs.

    Report
    • Posted

      Im 21 and a man I got it in my left hip if they treat ur child early it could heal very well on its own I haven't had a xray in years on mine but I have limited motion in my left hip, my left knee pops alot the doctor told me when I was grown to have a hip replacement and another doctor told me dont have a hip replacement till I get alot of pain. So I havent got the hip replacement it helps perthes disease alot to get a good nights sleep and to have shoes on to.  it can shorten the leg length also compared to the other but I dont have many problems with mine it affects me to know im different from other kids & adults tho but it could all be fixed with hip replacement. There gonna give ur kid anti inflammatorys more than likely. Good luck. Its basically blood loss to the femur I think which affects the hip. 

      Report

Join this discussion or start a new one?

New Discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.