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

[Guest guest]

All too familiar: specialist probably books a month ahead, possibly

no more willing to write script than pediatrician... Solution: new

pediatrician, selected specifically for willingness to treat

plagiocephaly. Your orthotist should be able to recommend someone.

Remember, you've paid in advance for this -- YOU have already made

the authoritative decision. It's just a matter of service now. (You

can see the specialist anyway, if you wish.)

Second issue. Your daughter seems to have the same kind of head

shape as mine (see photos section to confirm), and I'm telling you

from personal experience, waiting for the skin to indicate the need

for an adjustment is folly. Red flag flying!

The fit, and consequently the shape of your daughter's head, can be

adversely affected weeks before the skin is, once the latter is

acclimated to the normal friction and moisture inside the helmet.

Or, if the helmet is enlarged before that happens, in an attempt to

treat heat rash, it can be rendered ineffective.

Which may just leave you stuck at home, like I was, with a bad

fitting STARband, a head shape that goes in cycles from better to

worse, and your " feelings. " I beg of you: spare yourself!

--

Thad Launderville

town, VT

Clara, age 2, STARband

On Jul 15, 2010, at 1:33 PM, trevorandamanda wrote:

> 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...

>

[Guest guest]

Ugh...how unnerving...I actually finally felt comfortable with the decision to

go with starband. I asked the orthotist how long they have been doing

this...questions about the practice...how are they innovative in the field and

felt impressed..talked to a few other patients and majority were good. They were

involved in the fda approval of the starband scanner for fitting the helmet. For

a long time they made 2 helmets for each individual...one with the cast and one

with the scan (for the fda approval). They are working closely with Riley's NICU

to develop some positioning pillows to help the little one's noggins as they are

in the nicu.

I don't know how to look up a particular person's pics. Are these pics of your

head or your daughters (sorry...confused). Was your daughter in a starband. Did

she graduate to your standards? Did you put her in another band? I'm kind of

confused on your situation and would love to hear more.

How does an orthotist know it's time for an adjustment...how does docband decide

your helmet needs adjustment when you come in weekly? Do they scan each time...

I'm confused on this part. It seems to me like they manufacture the helmet

leaving room where they want the head to grow...and if it starts irritating

anywhere or rubbbing or rocking it will need adjusted. Is there another criteria

they look for?

Sorry...lots of questions. Thanks!

>

> > 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...

> >

>

[Guest guest]

On Jul 16, 2010, at 10:59 AM, trevorandamanda wrote:

> Ugh...how unnerving...I actually finally felt comfortable with the

> decision to go with starband. I asked the orthotist how long they

> have been doing this...questions about the practice...how are they

> innovative in the field and felt impressed..talked to a few other

> patients and majority were good. They were involved in the fda

> approval of the starband scanner for fitting the helmet. For a long

> time they made 2 helmets for each individual...one with the cast

> and one with the scan (for the fda approval). They are working

> closely with Riley's NICU to develop some positioning pillows to

> help the little one's noggins as they are in the nicu.

Well, it sounds like they won't give you a bad cast, certainly.

(That was part of our problem initially, as our orthotist failed to

let the cast dry adequately.) While good results are the bottom

line, I'd want before and after pics, not just references. Who among

us isn't thrilled with ANY positive result? It's hard to be

objective. I encouraged people walking in the door of the O & P I

used, only later to learn that I should have been telling them to run

like the wind!

> I don't know how to look up a particular person's pics. Are these

> pics of your head or your daughters (sorry...confused). Was your

> daughter in a starband. Did she graduate to your standards? Did you

> put her in another band? I'm kind of confused on your situation and

> would love to hear more.

Clara has a sharp angle on the back right of her head, and flattening

on the back left (left-sided plagiocephaly). Her face and forehead

are subtly affected in the opposite manner, but nowhere near as bad

as the back. From the front, she looks okay. But, the splayed angle

behind the right side of her face seemed to cause tracking problems

for her right eye, which is ultimately what brought us through the

iron curtain of pediatrician ignorance at an extremely late age....

16 months, I think, before we actually had a helmet in hand.

Now, as young as your daughter is, you could probably apply an upside-

down sand bucket and get better results that we got. But, when we

had a second helmet at 18 months, under the full supervisory

attention of Orthomerica, it still took an excessively long time to

impact the shape of her head in a therapeutic manner. There seemed

to be a direct relationship between the extra " growing room " and

effectiveness, and this is where the specific head shape may be of

concern in relation to the brand as a whole.

I would definitely qualify that as a secondary concern, though,

compared to the issue of adjustments. You'll have all the time/

growth in the world for the orthotist to muck around with, if you get

that script any time in the near future. I'm simply making a value

judgement in favor of Cranial Tech, aiming to get it over with as

quickly as possible, with as elegant a device as possible, given

unlimited finances.

> How does an orthotist know it's time for an adjustment...how does

> docband decide your helmet needs adjustment when you come in

> weekly? Do they scan each time... I'm confused on this part. It

> seems to me like they manufacture the helmet leaving room where

> they want the head to grow...and if it starts irritating anywhere

> or rubbbing or rocking it will need adjusted. Is there another

> criteria they look for?

We had a thread fairly recently where I half-jokingly detailed what

I'd want the hypothetical ideal orthotist to say about red spots,

rotation, etc. so I'll refer you to message #179342 in the interest

of seeing my family before bedtime.... But basically, I favor an

aggressive approach for asymmetrical heads because I've seen

firsthand both: the acute flexibility of sutures (over a period of

four DAYS, not WEEKS); and the futility of flexing them at all, if

not in advance of circumferential growth. Rather than skin

condition, the actual shape of the head relative to the helmet should

be leading the orthotist, towards squaring the angles ASAP. The more

frequently/actively this is done, the more efficient the process,

provided he has the perceptive skill required.

> Sorry...lots of questions. Thanks!

Very glad to be writing here...

Thad Launderville

town, VT

Clara age 2, STARband '10

[Guest guest]

I'm getting the impression that hospitals and specialists, maybe

doctors in general are just not interested in doing this work, and I

still don't get it. Is it the " grueling " five minutes of referring

to insurance guidelines? Or bigotry toward those lowly medical

professionals who have work more than their mouth muscles to get

money? " Maybe it will go away? " Really!? Isn't that universally

acknowledged to be the most ridiculous medical doctrine?

Our physical therapist was the most helpful local resource, and

that's apparently not uncommon. Maybe they're motivated to be

helpful by guilt over the unnecessary " torticollis " referrals they

get, or fear of responsibility for the actual problem.

If an orthotist receives a prescription from a particular geographic

area, they know who in that area is willing to write prescriptions

for orthoses.

I don't think anyone in our area is. After ditching our pediatrician

(who ultimately did write the prescription), I started taking the

whole family to a single doctor, for simplicity's sake, not really

expecting better service. I warned him that we would need

craniometry so we'd have a record of the outcome of Clara's

treatment, and he didn't argue. But he blew it off at the conclusion

of the treatment, and at the 2-yr visit, said he'd have to refer to a

specialist. The office sat on it for weeks, then called and said

their affiliated specialists want her scanned first, so they

recommend going out of network. Finally, last week, the doctor calls

to try and blow it off entirely. The specialist won't see her, she's

over a year old. I insist that he take the measurements, and again

refer him to the insurance guidelines. Finally he says he'll try to

get some measurements for us in a couple weeks... FOUR MONTHS LATE.

Obviously this practice would be totally unable to treat

plagiocephaly. Maybe I'll just keep switching doctors, and make them

all learn to measure Clara's head, as an education campaign

--

Thad Launderville

town, VT

Clara age 2, STARband '10

On Jul 20, 2010, at 7:47 PM, trevorandamanda wrote:

>

> He said it would round out as she starts to sit up and roll over

> and such. When I told him the orthotist said 15mm was in the severe

> category and I knew that level was well over what our insurance

> covered...he said that's what orthotists do and they are trying to

> 'sell' you a helmet. He was a jerk...but that seems to be the line

> I'm getting.

>

> There is another children's hospital in Indy - Peyton Manning's

> Children hospital. I'm going to look into them and see if they have

> a craniofacial department. Maybe try them if i don't hear good news

> back from the medical director at riley... I'm just at a lost..

>