8yr old boy with perthes . stressed and worried ....

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September 2016. We were told my son had perthes disease. We had no idea what that was . He is struggling with stiffness and some pain not to much thank god .school is suffering and when he wakes up in the morning and says mam my leg is not working today , it breaks my heart. He is not a child that complains, which makes it harder ... im I the only one that feels this way ?? Please say im not ...

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  • Posted

    Hi there

    No you are not, I've cried far too many tears!

    Where are you from? I notice you say 'mam'!? We are from Newcastle so say the same!

    If you want to chat feel free to email me x

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      I live in Ireland Sarah .and its mam or mammy for me ha ha ... I just feel sometimes its so hard for him but hes a great lad and gets on with it ... I would love to chat how do I get ur mail ? X
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  • Posted

    When my son had it at age 9 he too had stiffness in the morning. He would soak in a warm bath and also ride his bike before school. He also took ibuprofen. I will tell you that if you baby him and let him see that you are upset, it will make it worse. We told our son that this was going to be an adventure and we weren't sure what Gods plan was, but we will hang in there together.

    We found activities he could do, because he had to give up soccer for a couple years. He learned to play chess and the guitar and could beat any video game in a week.

    Today, he is 26, in the middle of Med school, except for his leave of absence to have a total hip replacement. He played soccer in high school and a couple years in college.

    He is a very compassionate and caring young man, with a strong faith.

    Hope this helps.

    Val Higginbotham

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    • Posted

      I know it is very hard not to baby him. One of the things that we also remember is it could be alot worse. When he first had pain, we were terrified, because his dad had bone cancer at 19 years old. We were thankful it was not that. My husband and I would remind each other and our son, it could be worse. Do you live in the U.S.?
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  • Posted

    So my son has just turned 8 and we found out he has Perthes at the age of 3. He does good most days and doesn't complain a lot but when he does i know that the pain is bad. He now has an ankle problem because he walks on his tiptoes to even out his legs. I watch him limp and it breaks my heart to know that it is bugging him.

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    • Posted

      My son had almost an inch difference. We used a lift made out of flip flops to put in his shoe. I would encourage him to walk as correctly as possible and do calf stretching, or he with have another issue to deal with if you let the calf and Achilles' tendon get shorter. 

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  • Posted

    Hi Rhonda, what treatment plan has the Consultant suggested for your son? They all have different ideas in how to treat Perthes and some are more likely to cause pain than others.

    My son was 3 when his Perthes was diagnosed, his head of femur had worn down nearly to the growth plate. We were told he had to stop walking/weightbearing immediately and for the next year. This was a huge shock, he started to suffer a lot of pain and was admitted to hospital numerous times, staying 2 weeks at a time, on traction. Eventually, because we were able to do the traction ourselves, we made him a bedroom downstairs and were given the traction equipment to use at home. Unfortunately our sons case was a severe one and complicated, and in the end he spent 5 years in a wheelchair before he was allowed to start weightbearing, slowly, when he was nearly 9. He was finally discharged at 13.

    the reason our consultant believed in non weightbearing in because the head of the femur, that is affected by Perthes, becomes so soft and moth eaten and if still walked on you run the risk of changing the shape of the bone which can cause it to slip out. What you want it to do is to keep its rounded shape whilst it goes through the disintegration stage, return of blood supply to bone, and re growth of bone. If it is over used during this time you will get pain and stiffness.

    If your son is still fully weight bearing, I would ask for a second opinion or do some research around the different treatments.

    the pain and stiffness your son is experiencing can be quite severe, and just standing on it can be too much, my son used to scream with the pain sometimes. Your son will need good pain relief, not just paracetamol, he'll need something stronger, Diclofenac used to help my son, with some others I can't remember.

    getting him a Memory Foam Mattress topper can help him be a bit more comfortable at night. 

    No one can really predict how long this will last for your son, but the right treatment is the most important thing for his future hip health going into adulthood.

    i hope I've managed to help a little, if you have any questions, don't hesitate to ask. X

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    • Posted

      Thanks so much tina . The specialist said he is not to bad at the min , and ibuprofen is all thats needed. I think for my lad I seem to be the biggest problem , I hate to see him suffer but thank god he dont have to much pain , mostly stiffness, I will try the memory foam mattress and see does that help with the mornings , he is a great boy and like your son never complains, . Should I try the insoles for comfort I wonder ? Cant do any worse only cousin his foot... I am so glad I found this forum, no one I spoke to knew what perthes was . (Like myself before diagnosis.) Thank you again so much for your reply . Its great we are not on our own with this ... xx
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    • Posted

      Glad I can help, I know how lonely it can be having a child with Perthes. You can try the insoles, but we got our son shoes/trainers with memory foam and deep soles built in, they aren't the typical looking school shoes but you can get black ones, Skechers do some and a few other good children's shoe shops, we had special permission from school for him to wear them. Our consultant told us to make him wear them for 2 years after he started to walk again, to stop too many jolts going through to the hip. 

      Have you joined the Perthes Association? We did and found it a great support, they even sent my son a hand propelled tricycle when he was 5, he was so happy that he could go to school and zoom around with his friends, and when we finished with it, we passed it on to another little boy in our school we discovered had Perthes.

      Take Care, and remember your not alone in this! X 

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