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New to Perthes, need advice/reassurance
Joanna WhitePostAugust 27, 2017, 09:07
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August 9, 2017, 11:47
Normal topicNew to Perthes, need advice/reassurance

Hi All,

My 5yo daughter was diagnosed with Bilateral Perthes Disease in July 2017. She was due to have a plate fitted in her left side on 18th August but due to circumstances beyond our control the surgery was cancelled. We are still waiting for a new date!! She is a very active girl who wants to take part in every activity going and is very outgoing. However, the last few weeks regardless of how busy we are she is so difficult to settle at night. I can only describe her as hyper active; she will be exhausted but it seems like there is something stopping her from actually relaxing or wanting to get into bed. I know she is experiencing pain but she battles through this and tells me she is ok despite very visible limping. Is this a normal issue with Perthes as I am exhausted and concerned as we have not been given much information and are overwhelmed with what we are reading about this condition. I want to ensure I am doing the right thing with my daughter and increase my own awareness. TIA

Zac BanksPostMarch 23, 2018, 14:38
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March 23, 2018, 14:32
Normal topicNew to Perthes, need advice/reassurance

Hey Tia, Hope you're well.

Didn't know if anyone got back to you here or if the surgery has gone ahead at all - but I just wanted to share my story with you so that you could have some piece of mind.

I'm a 26 yr old male, I had a femoral osteotomy when I was 7/8 years old and I can honestly say it changed my life for the better. My parents did 100% the right thing by putting me through the operation and although it was torture for a few months, I've come out the other side being able to go about my life without any issues at all. Infact, during the last check up I had when I was 18 - the surgeon couldn't tell the difference between the x-rays of the hips.

It's funny you should mention, not being able to settle at night as I was prone to night terrors before I had the surgery and used to sleep walk and frighten my parents and also being an active child - it was very hard to stop me from doing any activity!

I can assure you, your daughter will thank you later in life for all the hard times you might face! I know I do.

Thanks,
Zac

CARLA HENSONPostMay 1, 2018, 21:24
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April 26, 2017, 18:57
Normal topicNew to Perthes, need advice/reassurance

Hi there,

Joanna, I'm sorry to hear your story above. How are things now? My little boy Zac is 7 and was diagnosed in April last year. No op yet just monitoring and has to be kept off impact activity which is proving very hard emotionally as he is football daft. I too am overwhelmed by the information and must admit I haven't done too much research re looking ahead, as I'm finding it best to cope day at a time. Zac has just been up crying in bed with the pain after a few days limping. We had quite a long spell when the pain wasn't as bad before now. Our next appointment is 21 May.

Zac, that is great to hear a positive story. One of the reasons I haven't been that active in forums etc is that there is a lot of tough stories out there and I find that hard to digest whilst trying to stay positive for Zac.

Are you able to particpate in sports etc (if you like that kind of thing!)

Thanks

Carla

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