Re: Starband consult and ped visit (sorry...long)

[Guest guest]

Not sure if anyone else has said this, but I took my son to a neurosurgeon to

check for craniosynostosis before getting a band. The neurosurgeon wrote the

prescription for us. He initially didn't recommend getting a band, but I told

him that was what I wanted, and he was more than willing to write it for us. I

had also checked to see what requirements my insurance company had before my

appt., and asked the neurosurgeon to write the letter which they required.

We did end up getting a CAT scan also just to make sure about my son's head,

since the neurosurgeon wasn't positive in ruling it out from the office visit.

Hope this helps.

> >

> > Well...it's been an interesting morning. Midwest ortho (starband provider)

came

> >out and did a home eval today. Explained everything thoroughly and was very

much

> >helpful. Took some measurements (no scan today) and said her cranial vault

> >asymmetry is 15mm. They consider anything over 10mm to be severe and

recommend

> >helmet treatment. The good thing is that she surprisingly doesn't have much

> >facial aysmmetry. So...at the end of the appt we had decided we wanted to go

> >with them. They will do a 5 day post getting the cap...then a week after

> >that...then 2 weeks after that and if fit is good they will not see us for a

> >month unless we start to notice some redness or feel she's had a huge growth

> >spurt. I asked him the reason since docband wants to see her weekly. He said

> >they used to do weekly for the first 6 weeks but found it wasn't necessary.

He

> >said he owuld gladly see us more often just to check if that made us more

> >comfortable.

> >

> >

> > Then the ped visit...she is adamantly against helmets. She thinks they are

> >cruel...said she's never seen a child that isn't miserable in one. I stood my

> >ground and told her we'd researched it and decided this is the way we want to

go

> >if she qualifies (and that we have even researched our insurance and at what

> >point they will cover...and our measurements are in the covered category). We

> >told her what the orthotist said at Midwest. She replied that we would need

to

> >go through the craniofacial center at Riley. I agree...they will tell us for

> >sure it's just plagio and not cranio. She was a bit alarmed that my

daughter's

> >head circumference jumped from the 50th percentile to the 80th percentile in

the

> >last 2 months (while weight and height percentile remained the same). She

said

> >it could be due to the way it is growing because of the flat spot. She even

had

> >the nerve at the start of the appt to say she probably wouldn't have given us

> >the referral to Riley had she seen her (our pt called her office and asked

for

> >the referral). Ugh! So...Riley appt on Monday and praying those docs are pro

> >helmet (and praying most of all that it just the plagio).

> >

> >

> > Sorry for being so windy...I just realize everyone's frustration with the

> >process now...

> >

>