Re: Orthopedic recommendations

[Guest guest]

Pat - thank you so much for this. I need to print this out myself.

Really, this is great and I very much appreciate your " repeating "

this. It's weird - but, Ian has always shown to be 1 cm shorter on

the left-hand side - but, at our recent visit with Dr. H - he had NO

assymetry. I plan on seeing what he is at our next visit with Dr. H

and if there isn't a difference - then, I'm going to ask her what

she thinks. She'll probably just say that he was measured wrong all

those other times - but, I distinctly remember another physician

that she has worked with say to me that he could actually see Ian

compensating for his leg length discrepancy. And, I could always

see it when he walked and ran. Very strange. Although, we had

a " rushed " visit with Dr. H because of Ian's sickness while we were

there - so, who knows.

Thanks again.

- H

>

> Hi guys!! This is straight from Jenn, and I thought it would be

helpful info for all RSS parents.... I wasn't sure whether all RSS

kids need to see an orthopedist on a regular basis. This is the info

she sent me. I filed it away for future reference.

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> Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-

tube, GHT)

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> Straight from the doctor's mouth yesterday.

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> All RSS children with asymmetry should see a pediatric orthopedic

surgeon once a year for a checkup. A baseline spinal xray (for

scoliosis) should be taken at the first visit. Each year, the

physician should simply monitor for scoliosis, and measure the

asymmetry difference in length and circumference (typically legs).

>

> He had me make a simply chart for leg length discrepancy, which

tracks the " proportion " of the leg circumference differences. Since

the measurement differences will always change, we have seen that

's left thigh is always about 94-95% of the right.

Measurement error rate.

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> RSS children without asymmetry should be followed by their normal

pediatrician or peds endo, who can do the standard " bend " and " walk "

exams to simply keep an eye out for any possibility of scoliosis

developing. If the physician spots anything, the child would then

be referred to a pediatric orthopedic surgeon.

>

> If a child is actually diagnosed with scoliosis (which requires a

curvature degree of 10 degrees or greater), then the child should

absolutely be seen and treated by a pediatric orthopedic surgeon who

specializes in scoliosis and/or spinal disorders.

>

> Some of our RSS children will start off with 5 or 8 degrees of

curvature -- these kids need to be monitored to ensure that the

degree doesn't change. An annual xray is fine. Once the curvature

is over 12 degrees, then they xray every 6 months, I believe.

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