P. after surgery craniosynostosis question

[Guest guest]

:

Hi -- I've got a question for you (or anyone else here who cares to answer),

though it's ok if you don't have any answers....

I'm starting to get information together for our insurance appeals. To give

you a bit of history: our son was 8lbs, 14.5 oz. breech, cesarean birth, and

was born with an abnormal head shape. At the one week check up, pedi

scheduled an appointment for a CT scan to check for " fused sutures " because

of this head shape (mostly resembled a sagittal suture closure). (Very

pronounced " shelf " -- head juts out past neck, and at the time very narrow

face/head)

We could already feel the opening at the sagittal suture... (it was pretty

wide), though the CT was done, and Craniosynostosis was ruled out. My

uncomfortableness with the way our son placed his head (only left or right,

never facing out unless pillow supported him) still two weeks later lead us

to the neurosurgeon.

The Neurosurgeon wasn't that helpful at first, I inquired about corrective

actions later, such as a helmet and he said helmets were only used for the

opposite problem, flat back of head, bulging front. Still wanted to see my

son back in 3 months (when he would be four months of age). Said what most

of the drs. say - " hair will cover it... "

Though I had done searches about craniosynostosis by then, I aggressively

began to use the net for research about three weeks later. I just couldn't

accept that " hair will cover it " remark. That's when I found out about the

DOC band -- it took me a few more weeks before I even inquired to them if

they could help us, which they said they could, and they even looked at

pictures I sent to confirm we were talking about the same " shape " -- so on

four month check up, neurosurgeon glanced at my monthly pictures in which

there has been MINIMAL change, told me I was " a bit compulsive, " but also

agreed to write a script for the DOC band (at least he was familiar with it

for positional plagiocephly, but not that they had three different

bands...) -- and suggested himself that he write a letter of medical

necessity. Insurance company had to be difficult and would not take a

letter, had to talk directly to the office which took several weeks to

orchestrate (just venting there, that's not really something you need to

know, is it? sorry *weak smile*)

Ok -- my insurance denied, (saying it's only cosmetic), we were casted today

for the DOC band, and for my appeals, one of the lines of thought that I am

thinking is that when children who DO have craniosynostosis have surgery,

isn't part of their healing a molding device? I may be wrong, maybe the

surgery is all that is done.

Already I know that I am using the difference between cosmetic and

reconstructive definitions -- but wonder if bringing in that extra

information would help or not....

Any comments would be greatly appreciated (Quinn's photos are in the files

section under HKali)

Thanks!

H.