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OI CHILD

Madelyn's Rodding Experience

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

My daughter had the F-D rods put in her femurs at 2 years of age and this
July it will be 3 years she has had these rods. We live in Texas and she has
been a patient at the Shriners in Montreal since 3 months of age and Dr. Fassier
himself did her rodding surgery. She has been on the pamidronate treatments
since 3 months of age.
 
Her femurs were always quite straight and she began being weightbearing at 20 months of age and within 3 months of putting weight on her legs her femurs bowed so bad to look like a shepard's crook (or candy cane) at each top. Well, due to them being so bowed, one of her femurs broke so severely (1/2 and 100% displaced) that she almost went into shock and was placed into a double hip spica for 8 weeks. We then would not let her bear weight on her legs for a few months after coming out of the cast until Dr. Fassier could do the rodding surgery.
Since she has had the surgery she has been walking (and running everywhere)
and has had one femur fracture this past January from falling at preschool and
her femur did break in half but the rod held it in place and she didn't go
into shock and I didn't know until her x-ray that her femur was actually broken
because she was in good spirits singing in the ER and scooting on her bottom on
the hospital bed!!! She didn't require a cast and she sat in a wheelchair
for 5 weeks until her leg was healed and then began walking and running again.
She had to have 3 osteotomies on one femur and 1 on another but her incisions
are very small in comparison to the ones I have seen on children who have
gotten their surgeries here in the states. You really don't notice them. Dr.
Fassier puts them in backslab casts (plaster on the bottom then wrapped with ace wraps all around) for 3 weeks and then the casts come off and they are doing
physical therapy with leg braces on and then 3 months after wearing the leg
braces they were cut down to just cover the tibias (she has no rods in the
tibias). She wore the leg braces for about a year and a half and for the past
year she hasn't wore them because her tibias are staying straight. Two pedi-orthos here in Texas (who are some of the top in Houston) told us the rods they would use would have to be replaced every 8 months-12 months and we didn't want to put her through that nightmare!!! So far she has had the F-D rods for 3 years and she grows every year. She is 5 (Type III/IV) and weighs 33 lbs and is 36 1/2 inches tall. We go for her annual checkup in Canada July 20 so we shall see how things are looking.

Lisa
Mom to Madelyn Type III/IV OI

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