Looking for parents who have moved from casting to bracing

[Guest guest]

Hi everyone -

This is about looking for other parents who are moving from casting to bracing

and facing imminent surgery in the next few years.

Our son Guthrie was cast in Rochester for about a year and a half and began a

bracing program with his same Rochester team in March. He's just 3 1/2, and

definitive spinal fusion unfortunately seems a virtual certainty barring some

medical breakthrough. He is in the mid-60s out of cast and the mid-40s with his

brace on. The best we got in cast was the high 20s, but it had begun to stray

into the high 30s and his doctor is very committed to a quality-of-life approach

- last summer it was waterproof casts, now it's braces replaced every six

months, each new one molded from an EDF-formed cast.

We're in a holding period, but his doctor has said that if in his brace his

curve moves above 50 degrees, that we will need to discuss " other options " -

i.e., growing rods. Ten years old - the earliest his doctor would want to do

definitely spinal fusion - seems like an eternity from now. So there's a lot of

late-night hand wringing in our house.

There are so many NEW questions that are arising as we see what options are out

there - how to measure the quality of his treatment now that we're into bracing,

how long can growing rods really work (we've heard from his doctor that scar

tissue develops and makes continued telescoping impossible after 4-6

lengthenings), what are the actual ramifications of early spinal fusion, and

what choices are other parents making who are facing these same questions?

When I hunt around online, I still feel like this group represents the strongest

collection of parents dealing with EOS, and I have a feeling that includes

parents who are in different phases of the process. I'm hoping that a group of

you might respond to this email and just say whether or not you, too, are in a

similar boat. And if you are, what's your story? Where are you in the process?

What have you learned and discovered post-casting?

Thanks!

Gregor and Ansorge

Montclair, NJ