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i was informed perthes disease would last upto 3yrs?

Posted , 9 users are following.

donna66
donna66

my son was 4.5 years old when he started with perthes disease, i was told because he was young he would have a 100% recovery rate within 3 yrs, he is 9 in july. we are on our 3rd specialist 2 of which were fantstic. our 3rd specialist after returning due to pain getting servere told us surgery is looking possible in which they would break his leg and reset it. weve been seeing him for a yr now and in this time we have had no consistency of what is going to happen, he is having the operation, hes not having the operation, he can do impact, he should not be doing impact, we are really going round in circles, my son has never had to stop any of the activities he does to help with his perthes, 1 hrs swimming a wk, gymnastics for stretching, karate with no impact and riding his bike all agreed with specialist this was good for him. he is now struggling, iv been back to my gp as we are not happy and dont know if we are coming or going and is it really good for him to be on ibuprofen and paracetamol this length of time.

0 likes, 11 replies

11 Replies

  • sheila04
    sheila04 donna66

    Posted

    So my son has had this since he was 3 and we are less then six month of him being 6. The last check up we had they took an x-ray and then the doctor says lets watch and see what happens but this time he said that his hip hasn't gotten but a little better. He also told me that my son has a very bad case. It is close to 3 years and now I'm looking at maybe surgery and I was told that he had a good chance of a full recovery but that doesn't seem to be what is happening. I am going to push for him to tell me what would be next coming up if it does get better. I don't stop him from doing too much. I don't put him in any sports other then t-ball because I was told that he might pop his hip out. I'm not hopeful anymore that it will fix itself. 
  • PerthesAssociation
    PerthesAssociation donna66

    Posted

    Perthes disease can last anything from 2 to 5 years in the active stage.  Dependant on age, weight, activity and treatment most children under 6 make a full recovery with no intervention - the older and hevier the child the poorer the outcome.  The good news is 70% of children get better with no treatment at all, 90% get better without surgical intervention - the most important thing to remember is that there is no cure for Perthes disease, it will run it's course no matter what you do.  All treatments including surgery are to minimise damage to the femoral head that might lead to the need for a total hip replacement in adult life, none of these treatments are 100% and nothing at the moment can cure perthes - all we can do is "manage" it.
  • lorna0902
    lorna0902 donna66

    Posted

    Hi Donna, 

    just wanted to see how your sons doing, my son is 4.5 and was diagnosed with perthes last week, we are still in shock! 

    He has another X-ray due in 3 months when I am hoping to find out how severe his case his. 

    So gutted to hear your son is not making the recovery that is suggested. 

    • donna66
      donna66 lorna0902

      Posted

      Hi lorna, it is a big thing to take in, you must work hard with your son, physio is a very important part of recovery. When my son was diagnosed we signed him up for swimming which he is still doing now, going out on his bike and doing physio exercises at home this all stimulates the blood to flow to the bone to help regrowth. Unfortunately my sons bone grew back deformed and causing major problems, he is being taken into hospital in 8-10 wks to have dye injected into his hip to assess the best way to proceed we looking at 3 options 1) do nothing 2) shelf procedure or 3) break bone below femur head and rotate it into a different position . My thoughts were why don't they file this overgrown bone down, but they carnt as this is an important part of the bone where the blood flows. It's now been 5yrs, but there is always that sml % of not a 100% recovery with perthes when under 5yr olds get this disease.It's just pot luck I think. Trust your specialist and work hard with physio. This my sons recent X-ray, you can see how on movements it locks due to the bone sticking out. 
    • PerthesAssociation
      PerthesAssociation donna66

      Posted

      Donna I am surprised that you have been told that the head cannot be shaved as this procedure is quite common.
  • thos66
    thos66 donna66

    Posted

    Hi Donna, I was eventually diagnosed with Perthes when I was a child.

    i was only pulled & roughed up by so called doctors at the time (5-7 yrs old)

    although I had a lot of problems, I had some resbite through my teenage years,

    and later climbed 2 mountains. Only in my mid thirties had this started to be a real problem again. I've had pain killing injections, pain tablets, now a hip replacement.

    the reason I'm writing this is because i wish you to encourage your son to keep up

    the activities and find alternative pain relief, don't worry he will be fine.

  • HOTpicks99
    HOTpicks99 donna66

    Posted

    My daughter had perthes desease when she was three and she was treated by the person who diagnosed perthes desease he was brilliant though i cant remember his name my daughter was in permenant plaster for four years and in a wheelchair
  • PerthesAssociation
    PerthesAssociation donna66

    Posted

    Reading the replies you have had, I am sure you will be worried, but you must remember that 70% of children with Perthes get better without any intervention and in under 5's the figure is as high as 90%.  No one puts children in plaster for four years any more.  I think the last case I heard of in the UK was in the 1980's,  some consultants still use it to stabilise the hip and pre and post surgery, but the vast majority of children never need surgery.  Bear in mind when reading replies that people who have had the worst experience are usually those who write in, those who made a fast and good recovery are out there enjoying life and too busy to post here smile On our website you will find lots of positive examples of those who have made a full recovery and gone on to do great things.  Recently I learned that a little boy diagnosed only 4 years ago has just won a Sports Scholarship to a very well known Public School.  Feel free to give me a call on 01483 306637
  • carla49579
    carla49579 donna66

    Posted

    My son was just diagnosed with perthes this past friday. One specialist said its already in healed phase and they can't do anything for it besides physical therapy- and when it flares up he will be on crutches and have to take Motrin 2x a day for the rest of his life until he is old enough for them to do total hip replacement. The second special is mentioned the shelf- to make the hip function mechanically and it will help protect the labrum. I guess I'm replying to find out what decision was made for your kiddo. We aren't sure what to do and it is overwhelming Thank you to any feedback you have

    • kate69757
      kate69757 carla49579

      Posted

      Theres a couple facebook groups you can join for advice: 

      -Legg Calve Perthes Disease Support Group

      -Perthes Mom

       

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