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The waiting game!
GuestPostMarch 28, 2012, 08:36
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Normal topicThe waiting game!

Hi My son Oliver 9 was diagnosed a year ago. Up to that point he was a really active happy lad just about to play tennis for his county and playing football for his school. For the past year we've been doing physio twice a day and x-rays every 16 weeks. He's done nothing physical except swimming and riding his bike.. He's not allowed to run or have impact. Luckily his pain has been minimal (although he's never been a complainer) He has quite a limp but no leg length difference. Last week we went back to his consultant and where his hip has always been nicely where it should be it seems now to have moved out slightly and started to flatten. The consultant ummed and ahhed and said she wanted to wait another 12 weeks but I'm not really sure what she was umming and ahhing about I didn't want to talk about surgery infront of Oliver but am guessing that is what she is thinking - does that sound logical? Is it likely that the hip will go back to where it was or am I being too hopeful. I know I should have asked all these questions but I had my toddler with me and when I saw how the x-ray had changed I think I lost the ability to think clearly! Now I'm here counting the time down until we go back - 10.5 weeks. The warm weather has arrived and far from feeling happy about it I feel quite the opposite. It has been easy to keep Oliver indoors and amused over the dark winter period. Now however all his friends and brothers are playing out and want him to go, I cried watching him standing at the side of his friends game hobbling around not being able to join them as he would like. It's like I've lost a huge part of my child, I'm so angry inside at this horrible disease stealing childhoods. It's like we live in 16 or 12 week blocks from one appointment to the next, Oliver is forever hopeful he'll be given the all clear and always sobs after when he isn't. He's tougher than me though and seems to get on with it bless our beautiful babies their strength is amazing. Thank you to the Perthes Association that does an amazing job, stops us feeling so all alone and gives us the lovely forum to vent on 🙂 Keep on keeping on x

GuestPostApril 24, 2012, 22:56
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Normal topicRe: The waiting game!

Only about 20 % of kids with Perthes every need surgery or at least that is what I heard. Surgery depends on if you think your child will cope with it for one thing and what the doctor thinks. You could find new hobbies and things for Oliver to do, I found swimming good.

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