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

[Guest guest]

Thanks for all your responses.

The visit did not go well today either. He wants us to wait 3 months. I told him

how we felt...the insurance...her asymmetry...and he said 'i've seen worse'. So,

I was SO frustrated when I left I called the medical director (who I know has

written a script for someone with less asymmetry than my Kate at the same age).

I spoke with his nurse practitioner and we went over all the stuff again and I

told her I would like a second opinion...that we would really like to start

helmet therapy now and not wait any longer. So...she was going to have the

medical director review her chart and get back with us tomorrow. Praying he

gives us a second chance. I did get the official email from Midwest Orthotics

and she is 15 mm cranial vault asymmetry and 92% CI.

Thanks for all your support...it was so frustrating walking out of the clinic

today feeling like we are back at square one.

~

Mommy to Kate, 4 months

> > >

> > > 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...

> > >

> >

>