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13 year old with AVN of hip

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Reign30

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Thank you, very much appreciated!
 

Jamie

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I don't have a lot of information about surgeons who specialize in younger patients, but I can recommend this doctor who very successfully treated one of our members (username: Shugaplum) who was in her mid-20's and an active dancer when her hip problems developed.

New York Hospital for Special Surgery (HSS)
Dr. Padgett
Shugaplum's surgeon.
 

DesertDiva

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I'm so very sorry to hear about your daughter. I found out last August (after shuffling though doctors and physical therapy) that I had AVN in both hips and have now had both hips replaced. There are actually four stages of AVN (I was stage 4 - the end stage) and I think that might be a reason for you to seek out a second opinion. As other people have indicated, I would also be concerned about your daughter and her final "adult" growth and height and the proper timing. Sadly, it's not something that's going to go away or get better on it's own. It's probably a good idea to get a second (or even third) opinion if you can buy some time and your daughter is not severely compromised and/or in pain.
 
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Reign30

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I am sorry to hear about having AVN in both hips. I hope you are feeling better after having the THR. We never really received a straight answer on which stage she was in initially. Even now we never get an exact answer. We have been told this can take years to go through the entire process. We will continue to research. She is not in awful pain anymore, initially she was in a great deal of pain but being on crutches helped. The way she describes the feeling to us when we notice her limping more is “ it feels tired”. I don’t know what that feels like and I feel so bad for her. After a good night of rest she is usually feeling better the next day. She may need to wait based on her age. We will research some other doctors and make some appointments.
thank you
 

weezie44

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My daughter was diagnosed at 19 as a result of a femur fracture at age 15. In my opinion and experience, it is absolutely vital to consult with pediatric orthopedists that specialize in adolescent/young adult hips and AVN and/or Perthes. Both for replacement or possible preservation depending on her presentation. We went to many OS's who all said wait and do nothing, wait and suffer as long as possible. AVN is progressive and this just made no sense to me. So I began researching and consulting with specialists around the country to get other opinions from docs that treat kids. Dr. Shawn Standard in Baltimore does monthly chat sessions and will review your films and discuss. Paley Institute in Florida and Texas Scottish Rite in Dallas are other options for consultation. Get as much info as you can. Treatment of this disease in children is different than adults. There is a Facebook group for parents raising children with AVN that has great info and support.
My daughter underwent bone grafting surgery last fall. I'm happy to share more info if you'd like. This is such a tough road as a parent. Many hugs to you.
 
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Reign30

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Thank you very much for all of this info. I will look into all of these doctors. I would love to join the Facebook page if you are able to direct me to that page. What did you ultimately choose for your daughter?
 
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Reign30

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Found the Facebook page! Thank you
 

weezie44

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Great! I will look for your post and you can DM me there. Lots of great info there.
 

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