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Post by heatherengelbrecht on Nov 10, 2009 22:45:30 GMT -5
Hi Donna, Thank you for your reply. We are feeling very against going ahead with surgery as it sounds like this may not even work. It also sounds like Ethan will be left with a limp. Not sure if this is permanent or not? We are getting a second opinion as we're hoping to try other methods (ie. removeable splints and even having the petrie cast on again). As well as swimming and physio, to ensure the ball joint is in the right position as it grows back.
When Ethan was diagnosed back in June 2009, his specialist did not recommend limiting his activity at all (just no jumping). But reading some of the posts, it seems that it is important to limit activity so that the wear to the top of the femur head is kept to a minimum.
Many thanks again... Heather
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Post by sujisuninja on Dec 4, 2009 14:54:38 GMT -5
dear anyone
I found out when I was 9 I had perthes for a few years and had done a lot of damage so I had the operation and couple years later had the plate out due to everything being fine. Im 17 now then from constant pain in my hip I've found out in the last few weeks that the bone regrew abnormally and if it cannot be fixed through physio therapy (i believe it wont help ) I will have to have the bone shaved in another op and they have to make another scar by my groin I want to know whether or not you know of this happening before and how a person coped with this happening as it will tighten my hip even more restricting my limited movement already.
thank you ps I live in uk
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Post by Donna Brown on Dec 6, 2009 16:35:36 GMT -5
Hi
There are two online groups where you can get some help from - one is for parents of perthes kids, but having said that, there are other teens going through what you are and you may be able to connect with them, through that group. The other is for adult survivors and again, you can make contact with others who had perthes when they were children. Let me know and I can send you an invitation to one, or both of the groups - contact me directly at perthesnz@yahoo.com.au
The one thing I will say, as a perthes child myself and now the parent of two perthes children, is that once you start down the surgical route, it does seem that the need to continue down it occurs. My daughter has had a number of major surgeries for perthes now and at 13 years old, it hasn't finished. My own journey through perthes, did not include surgery as a child, as that just wasn't an option then, but now at 46 years old, I have recently had a hip replacement and I know that this means that there will be more to come too.
Donna - NZ
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Post by achoo987 on Mar 23, 2010 23:22:03 GMT -5
Hi everyone,
My son was just diagnosed with perthes on 3/19/2010. It's hard to take and it seems like its just a wait and see game is that how this all works out. He's only 3 and 1/2 years old and from what I'm reading it's supposed to be easier for him but it doesn't take long for him to get tired and limping. He can't seem to make it from the car to the store with out wanting to be carried. It doesn't seem like it's easier on him.
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Post by sarashute on Jul 12, 2010 23:16:12 GMT -5
Hi,
I am very new to all of this (not very computer savvy!). My son Hamish was diagnosed with Perthes in his right hip three weeks ago after limping for the past two months. Wow, I think we as parents are over the initial shock - he is a very sporty boy and the middle child of a sport obsessed family having brothers either side of him. It is a huge change to the way we as a family live our life. He loves water skiing, cricket and is a great Aussie rules footballer. Everything non sitting my boys love - we are hoping the one positive out of this is that his school work improves!
I have been looking for websites nightly and today found yours - I am very happy.
We have seen two specialists who have differing opions. One to neurofen him morning and night and get him walking on it (but no running and jumping/ gentle cycling and swimming) and the other to use crutches as much as possible and keep off it as much as possible - to get him into swimming and physio.
I think after reading so much we would rather keep him off it - but are so unsure. He is not in pain. The crutches help remind him that he can't do the same as his brothers although he is now very fast and his hand balling skills will be great by the end of it.
None of the doctors in Adelaide that we have seen recommend surgery. Just wait and see.
It is just frustrating knowing that we can't do anything for him - I have looked up vitamins, changes to his diet anything to speed up his recovery but knowing we can do nothing feels terrible.
Thanks. Sara
Thanks Sara
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