RE: very frustrated and need advice...Jane

May 19, 2010

I would seek out/demand a promt eval by another experienced

Neuro. An effective tool might be to provide the ped with evidence based

research on why these issues must be ruled out asap…..I don’t believe

in wait and see for this either.

Let us know if ISOP can help.

HRH

From:

[mailto:infantile scoliosis treatment ] On Behalf Of Jane Bigler

Sent: Monday, May 17, 2010 6:34 PM

Subject: very frustrated and need advice...

So

I got a call today that Grace's urodynamic test has to be delayed. Her

doctor had her baby a month early and so now Grace's test can't happen until at

least the end of August.

I

emailed her pediatrician and told her that in the interim, I'd like to have

Grace's MRI's reviewed by Neurology to rule out a tethered cord or fatty filium

(sp?). She said she'd give me a referral, but it may take just as long to

get in to see the neurologist AND (this is the frustrating part) she thinks it

would be better to wait until after urology looks at her because... " there

is limited evidence based research about treatment and evaluation for a

tethered cord and the surgical correction can be risky. "

What do I do??

Jane

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