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Newly diagnosed

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Guest
Guest

My son who is nearly 8yrs old has recently been diagnosed with perthes.

After a few hospital visits for pain firstly in his knee and then in his hip, being in terrible pain and being unable to walk or put an weight on his leg. we being told he has perthes.

We were advised to return to the hospital in 1 month ( next week) for his hip to be re x-rayed (his previous x ray was normal) and to look up the disease on the internet. Hence how I found this site and others.

My son is not currently in any pain unless he does too much where he then says it aches. his leg is very stiff and has no movement and his foot is turned in.

My immediate fear is will pain (which was horrific to witness!) return or is it possible that the pain is over?

Also has anyone been able to obtain an information booklet on the disease that is apprpriate for his age?

Many thanks

From a frightened mum sad

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    our son was diagnosed last August with perthes at 8 years of age after several visits to the hospital over the previous year as x rays were not showing up anything.His foot is turned in and his hip is stiff he goes swimming twice a week and physio - trampoline work most days our doctors advice is to monitor the disease so every 3-4 months x rays are taken and a physiotherapist monitors his hip movement every week.

    Regards,

    James & Dolores

    Dublin Ireland.

  • Guest
    Guest

    Posted

    Thnaks 4 your reply. My son has now had further x ray and has now been referred to a rheumotologist for a second opion as the x ray has come back ok. I so confused. His hip is still very stiff and his foot is turned inwards. I'm finding the waiting agonising as my son is getting very frustrated. If its not perthes then whats wrong with his leg??
  • Guest
    Guest

    Posted

    My son (now 16) was diagnosed with Perthes in his left hip at the age of 6 (symptoms were a slight limp and ache)

    After doing the rounds of x rays and waiting finally we started treatment which involved a 3 week stay in hospital with both legs in traction., bed bound for the full 3 weeks...bed baths, potty etc. This sounds pretty awful but in actual fact my son did not experience any pain whilst in traction and quickly adjusted to life in bed. We turned it into a bit of an adventure, plenty of visitors, games.When I speak with him now his memory of the experience is just a happy fun time. Unfortunately around this time he was also diagnosed with Perthes in his right hip (it is quite rare to have Perthes in both hips). Again we tried traction but this did not work therefore he had surgery (metal pin and plate to hold the joint in position.) This involved a week long stay in hospital after surgery. 6 weeks in a wheelchair and then subsequently the use of crutches until the metal pins and plate were removed after 1 year. Again this whole experience sounds pretty bad but it was pretty painless and my son adapted pretty quickly to his circumstance.

    There was plenty of physio afterwards. His right leg had lost most of the muscle due to lack of use (his right bum cheek had also wasted away!) From then on we had regular hospital check ups and he did not participate in any sport (except swimming) until the age of 11 when he was finally discharged from the hospital visits and since then has taken part in every sport imaginable football, cricket, golf, athletics He is extremely fit and healthy and has participated in these sports to a high standard that I would not have believed possible whilst living through the various treatments.

    He has limited movement in the right hip (He is unable sit cross legged). He still gets aches and pains in the right hip. I do believe this will always be the case and it is something we have to manage and control. I do have concerns over the long term prognosis of the condition. Early arthritis etc but that is something to deal with in the future. In the meantime my son is doing everything that any other 16 year old would do. which is something we could not imagine 10 years ago when he was first diagnosed.

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