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

[Guest guest]

Hi,

I am still quite surprised by the monthly appointment times. I can see they may

not want to do weekly, but not sure why they need to wait so long. the band is

most effective when it is holding properly at the holding points. If you leave

too much " extra room " it it likely to slip around a lot. I guess I would push

them to leave less room between adjustments and see her more. Basically the band

is adjusted by carving out the foam and leaving more room when the band is

getting tight. However to maximize the effect you don't want to make it too big

to start because they you have less control over where the growth will go. My

daughter had brachy (flat in back) and her sides held the band in place. We

wanted her growth directed toward the back, so there was lots of room there.

However there was less room in the forehead area to help keep it from slipping.

She did grow in the forehead area too, so that is where most of our adjustments

were.

Plus your ped is a jerk. I can send him/her hundreds or pictures of my daughter

happily wearing her band. She was never miserable although in our case she

didn't sleep well - but she has never been a great sleeper either before or

after the band. Actually the only way she ever slept well was right next to me.

I would be concerned about the fast growth, but not overly. Just make sure you

have it checked out. My dauther's head was 50th percentile at birth, and went to

95%+ by age 6 mo. There was some concern for hydrocephalus but not too much

because she showed no signs of delays (for the most part she was ahead). Her

sutures where still open, so they ruled it out by doing an ultrasound of her

head. Basically her head caught up with her body, and since 6 mo old her height,

weight and head have all been about 95th percentile. You can do a ctscan which

is the best way to see, but there is some radiation with a ctscan, so my ped

preferred to go with the ultrasound.

Keep us posted on your journey.

-christine

sydney, 4.5 yrs, starband grad

>

> 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...

>