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OI CHILD

Adam's Rodding Experience

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OI Children are like snowflakes-----no two are just alike.

Femur rods have been a long term issue for Adam. We've been doing rodding for
him since he was 2 years old....13 years. We talk about rods like everyone should know exactly what it's all about but I know that it's a challenging issue so let me share a bit of our experience and hope it might be helpful information.
Adam is a Type III/IV and is 15 years old and has been mostly ambulatory with
and without aids since he was 3 and also uses a wheelchair. Only on Pam since
he was 9 1/2 so not the greatest bone density. He's a typical III in that he is
very short at 42" and had severe kyphoscoliosis which was stablized by a full
spinal fusion when he was 10 that robbed him of a lot of his potential height.
That's just a bit of info about my snowflake!
Rush rods are stainless steel and were the most reliable for many years but did
NOT grow and were not attached in any way. There is a "hook" to hold it in
place over the top of the femur (to keep it from slipping down the bone)...so
when the bone grew the bone would extend beyond the rod at the bottom. The rod
is "stiff" and if the bone bowed the rod would stay straight and just go out of
the bone at the bow infiltrating the tissue (ouch!). This happened to Adam
several times. The rod could bend if a fall was traumatic and this happened to
Adam as well.
If the rod is too short, the bone is unsupported below the rod and it's a
fracture waiting to happen. So, if they grow much, there is a lot of rodding
surgery with this non extendable rod. If the rod is bent...it's a fracture
waiting to happen so they need to be replaced if they bend, more rodding
surgery. Unfortunately, Adam also had a Rush rod slip upward into his hip and
cause lots of pain before it was removed. His last Rush rods (2 years ago) lasted only a year and one intruded into the tissue because of severe bowing and the other was the one that slipped upward into the hip. I'd had it with Rush rods!
Baily-Dubow rods are also stainless steel and were designed to extend but had a
50% failure rate...extending when they weren't supposed to (into the knee or hip)
or not extending as designed. They were inserted somehow at the knee as well as the hip because Adam has a knee scar on the one leg that had a B-D rod. This
rod (he only had one) bent without a trauma and just wasn't satisfactory but
we'd originally hoped it would reduce the reroddings because it extended.
Everyone pretty much knows about the shish ka bob bone resections done at the
insertion of both these rods so I won't go into that trauma.
The F-D rods are what Adam had inserted last summer. They fasten top and bottom so they can't slip up or down. They are screwed in very firmly. The extend part is in the middle to provide the most support at top and bottom after it starts
to extend. The new rodding procedure is great and doesn't require the long
incision from knee to hip of the other two rods, reducing healing time
substantially as well as scarring. They come in many sizes (width's around) and
in titanium and stainless steel.
Adam's doctor didn't like the titanium because he said it was too "flexible"...I
actually thought that was an advantage so it would "move" better with the bone
instead of going right into the tissue if there was bowing...giving more time
between roddings. But he went with a very sturdy stainless steel trying to
stabilize Adam's femurs so he wouldn't have any more non unions in his femurs.
It was a good trade off and all is well after a full year. Yea!!!
However difficult the rods, they are such great inner stability for fragile
bones and keep the fractures from being more severe, so they are VERY much worth all the trouble if a child is really fracture prone like Adam.
Ronit
Mom to Adam Type III OI

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