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Genu Recurvatum Rss

Our daughter was born with this rare congenital condition, also known as "back knee'. Its not life threatening but it means weekly cast changes on both legs to make them bend, also specialist treatment is also required. Im told the stats are 1 in 17 million. Ive searched many websites in the hope of finding someone else who has or is going through the same thing with no luck. Surely there is someone out there.
Hi,

Sorry I cant help you I just wanted to say wow. I just googled it as I'd never heard of it before. I really hope you find someone to share with. It can be very isolating with a special needs child even when its not very rare, so I imagine it must be very hard for you.

Will she ever be out of casts or will she wear some sort of splint for the rest of her life??
Hi, Yes it certainly came as abit of a shock when we 1st saw her and unfortunately nothing was picked up in my ultrasounds. Even if it had I highly doubt anything could have been done.

She is progressing extremely well and should be out of fulltime casts in about a month but will need night casts from then on. Her specialist has said that once all treatment is over no on will be able to tell anything was ever wrong, but her crawling and walking will be slower to develop and will suffer from her knees dislocationg often.
Hi,

Sorry I cant help you I just wanted to say wow. I just googled it as I'd never heard of it before. I really hope you find someone to share with. It can be very isolating with a special needs child even when its not very rare, so I imagine it must be very hard for you.

Will she ever be out of casts or will she wear some sort of splint for the rest of her life??
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[quote name='fionastokes1' date='02 June 2011 - 06:52 AM' timestamp='1306959766' post='3000125']
Hi, Yes it certainly came as abit of a shock when we 1st saw her and unfortunately nothing was picked up in my ultrasounds. Even if it had I highly doubt anything could have been done.

She is progressing extremely well and should be out of fulltime casts in about a month but will need night casts from then on. Her specialist has said that once all treatment is over no on will be able to tell anything was ever wrong, but her crawling and walking will be slower to develop and will suffer from her knees dislocationg often.

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Thats fantastic that they can help her so she'll walk 'normally'.



My son wears splints day and night and he copes very well - children are so resiliant (sp?). He learnt to walk at 3 and a half and just crawled everywhere before that - he actually still does crawl when he is tired.

I bet shes a determined little soul.

Our daughter was born with this rare congenital condition, also known as "back knee'. Its not life threatening but it means weekly cast changes on both legs to make them bend, also specialist treatment is also required. Im told the stats are 1 in 17 million. Ive searched many websites in the hope of finding someone else who has or is going through the same thing with no luck. Surely there is someone out there.

My 9 month son also had genu recurvatum when he was born i had never heard of it before until the told me i was scared to even look at his leg when they let me hold him for the first time before yhey took him over to the NICU at cardinal glennon children hospital i was ao upset i thought when i i. Got out of the hospital i could ppck him up and go home but they saw that he wasnt eating like he should turns out he has acid reflux i was there for a whole month with him oct 26 the day after he was born and he went home nov 24 the day before thanksgiving but now he's doing fine the cast was off a fews weeks after i brought him home and doesnt have to see the orthopedic anymore he's 9 months and already startn to walk with no probleks with his knee
Thats great to hear you little boy is doing well. We see our specialist again this month and fingers crossed it will be the end of it, apart from the odd check up with Physio. Our bubba is progressing well and doing all the things she should be for a baby of her age (5 1/2 months. Still not sure if she will be delayed in walking just yet but all appears to be on track.
Just wanted to update my little ones progress. We went to see her specialist for a 12mth check up. He was extremely shocked by how well she is doing. He shocked us even more by saying he was suprised her knee caps had developed!!. Apparently a high case of patients with this condition never have them form.
We still have regular physio, and all though she is still not walking, she seems to be well on her way. She will hang onto the furniture and walk around the house this way. Our next visit is in August and by this time the specialist has predicted she will be walking.
Hi Fiona,
My daughter is 18 months, and isn't walking. We brought her to her pedi for her regular appointment and to have her legs checked. At her 14 month appointment her doctor thought she was double jointed, so we just thought she needed extra time to get the hang of walking. Well now after seeing her, her doctor is leaning towards genu recurvatum. We will not know for sure until we meet with an orthodedic surgeon. This was never anything noticed when she was born, or even up until this point. I know you have been down this road with your daughter, can you offer any advice? What should we expect? Her doctor is having us do an excercise with her feet, she keeps them straight out we need to help her bend them back. And her knees curve in. How is your daughter doing now?
Thanks!
Fiona,

I live in the USA and have a 21 yr old daughter who was born with the exact same diagnosis and went thru the casting as well. I was online researching doctors and came across your posting! My daughter only had this condition in her left leg, So she was able to walk at 13 months. She has had a very full and active life as kids are amazing at adapting to any situation. Children are too young to understand that they are different or have a disability so I would advise that you not treat her any different or tell her she has one. When they are old enough to realize the difference (around age 6 or 7) it is a great time to talk with them about it. Meanwhile they will develop to be confident and resilient and adaptive. We put our daughter in gymnastics at age 3 to act as sort of a more fun version of physical therapy. She loved it and was the fasted learning kid in her class. She grew up thinking of herself as an athlete. At age six, we took her ice skating for the first time and she fell in love with it. She switched from gymnastics to ice skating and became an amazing, highly competitive figure skater. Now she is in college and looking get her doctorate in physical therapy!
Fiona,

I live in the USA and have a 21 yr old daughter who was born with the exact same diagnosis and went thru the casting as well. I was online researching doctors and came across your posting! My daughter only had this condition in her left leg, So she was able to walk at 13 months. She has had a very full and active life as kids are amazing at adapting to any situation. Children are too young to understand that they are different or have a disability so I would advise that you not treat her any different or tell her she has one. When they are old enough to realize the difference (around age 6 or 7) it is a great time to talk with them about it. Meanwhile they will develop to be confident and resilient and adaptive. We put our daughter in gymnastics at age 3 to act as sort of a more fun version of physical therapy. She loved it and was the fasted learning kid in her class. She grew up thinking of herself as an athlete. At age six, we took her ice skating for the first time and she fell in love with it. She switched from gymnastics to ice skating and became an amazing, highly competitive figure skater. Now she is in college and looking get her doctorate in physical therapy!
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