Audrey is one very flexible girl. People like to use the term "double jointed" but there really is no such thing as being double jointed. A person can have loose ligaments and tendons, or ligaments that subluxate (slip out of place), but no double joints.
Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.
Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.
The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.
Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.
We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.
Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.
In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!
April 7th Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!
After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.
As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.
So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year.
Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.
Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.
The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.
Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.
We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.
Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.
In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!
April 7th Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!
After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.
As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.
So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year.
4 comments:
We have 6 kids who need major oral surgery. Not as complicated but a big deal as well. :o)
praying for your kiddos!
(((((HUGS))))))
Do you think she could have EDS? Hypermobility type maybe?
Daniela H, thanks for the question. No, her hyper mobility comes from years of languishing in a crib and no opportunity to use her muscles. When kids who already have low muscle tone are deprived of sensory input, they will use their body of entertainment, even when that means contorting their bodies, dislocating joints. etc.
Awe dang I've heard of that type of thing happening, but it's sad to hear that was what happened with her.
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