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My son has Perthes who is 2years old

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beckykenyon
beckykenyon

Hi, my son has just been diagnosed with perthes disease at the age of 2years 1month. His symptoms started at about 1 1/2.

I took him to the doctors who didnt seem bother by my sons limp or the fact he was falling over continuously.

I took him to a private doctor the next day who examined him and did an xray. He said all was normal and put it down to a collection of fluid from an infection or cold that had settled on his hip joint. We were happy with this and his limp went with in a day or two.

It came back once every 3/4weeks but only for a day and he was fine. However a few weeks ago he woke up with a limpp and over the course of the day it got worse ending with him being unable to walk. We too him to the hospital who gave us an appointment with the orthopedic doc the next day.

Blood tests were done and an ultrasound which detected fluid on his hip. They sent us home thinking it was irritable hip. The pediatric orthopedic doc was on holiday so we had an appointment with him last week. He told us it was perthesafter examining him and checking his xray.

He told us it was very rare to see a child of my sons age with the disease. After doing a bit of research on the internet i canr find anyone younger than about 3 who is talking about it!

Has anyone else heard of it in a young child like mine?Also reading up i see that the more damage to the bone the worse the long term effects. My sons left hip bone was 7.3cm but his right 4.5cm.

Any help would be appreciated Thanks Becky

0 likes, 5 replies

5 Replies

  • vickie28634
    vickie28634 beckykenyon

    Posted

    hi Becky

    my son is just under 3 and has just been diagnosed with perthes. He has been suffering with an on/off limping for 9 months but can go weeks not limping and then struggle for 2-3 days a time. I also notice it bothers him more when he has a cold or is run down.

    We are seeing a consultant on Monday to find out more but they seemed very surprised at the young age.

    is there anything you have discovered since writing on here? 

    thanks, vickie 

    • beckykenyon
      beckykenyon vickie28634

      Posted

      No you are the first response I've had and I found a group on Facebook that have been fab for information it's called legg calve Perthes support group. They are mainly American but they are so helpful and knowledgeable. There is a dr in America called dr standards he does online chats ever month you can send him pics of the X-rays and he looks and then and gives you his opinions! My sons had it now for nearly 2 years and we still have no regrowth we go through troughs and peaks with his pain I find the more he does the worse his pain is at night! If you're in the uk there is little to no help available. Stop all jumping activities and get swimming that helps loads hope this helps xx
    • vickie28634
      vickie28634 beckykenyon

      Posted

      Thanks for the quick reply Becky smile

      sorry to hear there has been no regrowth. I don't even know yet how much of size difference there is, hopefully find out more next week. His bloods were fine and nothing else has been mentioned yet. It seemed to be really bad the first time he had it. He had a chest infection and then limped for 2 weeks afterwards. SometimeSometimes asking us to pick him up because he couldn't walk. since then it's not been as bad but iif he let's us know hes not happy with it! 

      The trouble we have is that he is a very energetic boy! he is constantly running, jumping, climbing and doesn't quite get why he should stop lol 

      have also just taken down his trampoline sad

      thanks for the advice on swimming. I will start to take him regularly xx

  • sassepas
    sassepas beckykenyon

    Posted

    Hi Becky and Vicky,

    Your stories are almost the same like that of my son. Now he is at the age of 4 and a few months ago we got the diagnose of Perthes. He is suffering for 2 years now. 2 years ago he started limping with his left leg. The experts thought about a coxitis fugax or a reactive artritis.

    (We are from the Netherlands, so I immediately apologize for my english writing..)

    He also had blood test, ultrasounds and xray and the only thing they could see was fluid in his hipjoint.

    After two years of limping a few days a month, and falling over, stumbling, complaining about pain in his leg and so on..we decided to ask for a new check with a pediatric orthopeed and in a few minutes he diagnosed Perthes, a severe one.

    In the Netherlands we have an new check every three months. In decembre we'll have the next one and I hope we can see some progression.

    Thanks for sharing and the recognition!

    Saskia

    • beckykenyon
      beckykenyon sassepas

      Posted

      We had the same they thought it was fluid and did ultra sounds and spoke about all kinds of horrid procedures! After a few days in hospital they diagnosed Perthes. We have recently changed orthos because of retirement and I'm a lot happier now. They were xraying every 3/4 months but he has decided that the potential damage from the X-rays for they to say there is no regrowth is not worth it so we have now moved to yearly with the option of ringing if we have a problem for an appointment. My son has full head involvement but has a really good range of movement we are very lucky. There are a couple of really good pages on facebook for Perthes parents/suffers/adults who had Perthes as a child and they are invaluable, the people on there know everything and are so helpful. Definitely worth a look. Fingers crossed for your family xx
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