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Hi -

The cash price I was quoted for the Hanger band from 3 different

Hanger facilities in WA state was $300-$600, $500 and then $600.

They advised me to hurry because the medical coding was going to be

changed ASAP which would bring the new cost to $2500 according to

one Hanger Orthotist. I was told that the helmet costs $250 to

make. On your side of the mountains, have her call the Tacoma

facility - that is who I would have gone with (his name is ). I

wasn't going to post the price of the Hanger band here because I

didn't want people to get upset if it is more in their state. I

think it all depends on what state you live in as far as the price

goes. Also, the insurance price is much much higher than the cash

price. said that he has made about 60 bands as far as

experience goes. He was really nice.

Diane

Alyssa

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> I met a woman today with a 15 month old son. This child has

> completely UNTREATED torticollis! She has been asking her ped

about

> it since he was BORN! She was repeatedly told he was fine, don't

> worry, etc. He also has moderate plagio.

>

> She is low income and in an HMO. Since the same thing happened to

my

> son, I'm steamed on her behalf. My son is okay because I have a

> computer, but she doesn't. She asked me all kinds of questions and

> asked me to look at her son. I saw pics of him and clearly he's

had

> the tort since birth and the plagio since shortly after that.

>

> So...I told her I would try to find her a better doctor within her

> healthcare system and would give her whatever info I had. Anyone

in

> Seattle with advice? She can get a referral to PT at Children's

(if

> she can't I'll help her) but if she wants a helmet she'd better

move

> fast.

>

> So...she's working a couple of jobs, at least, but she'd have to

pay

> out of pocket for a helmet and drive to Portland every couple of

> weeks (if she goes with Hangar). In my opinion the plagio is

> moderate, and if it were my child obviously I'd band him. But he

> isn't my child and I'm not sure what to say. I don't want to

> encourage her to get a band if she can't afford it. I sure don't

want

> to make her feel bad about the child's head if she can't do

anything

> about it. I also don't want to lie and say I think he's normal.

>

> What do I do? Anyone? Thanks! I'm going to post this on the

> torticollis board, too.

>

>

> , 19 mos, tort, plagio, DOC Band 5/7

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Guest guest

Wow, thanks Diane! Your research rules! That sounds like a really

good deal, actually. I will call him myself and see what he says, and

get back to her.

> > I met a woman today with a 15 month old son. This child has

> > completely UNTREATED torticollis! She has been asking her ped

> about

> > it since he was BORN! She was repeatedly told he was fine, don't

> > worry, etc. He also has moderate plagio.

> >

> > She is low income and in an HMO. Since the same thing happened to

> my

> > son, I'm steamed on her behalf. My son is okay because I have a

> > computer, but she doesn't. She asked me all kinds of questions

and

> > asked me to look at her son. I saw pics of him and clearly he's

> had

> > the tort since birth and the plagio since shortly after that.

> >

> > So...I told her I would try to find her a better doctor within

her

> > healthcare system and would give her whatever info I had. Anyone

> in

> > Seattle with advice? She can get a referral to PT at Children's

> (if

> > she can't I'll help her) but if she wants a helmet she'd better

> move

> > fast.

> >

> > So...she's working a couple of jobs, at least, but she'd have to

> pay

> > out of pocket for a helmet and drive to Portland every couple of

> > weeks (if she goes with Hangar). In my opinion the plagio is

> > moderate, and if it were my child obviously I'd band him. But he

> > isn't my child and I'm not sure what to say. I don't want to

> > encourage her to get a band if she can't afford it. I sure don't

> want

> > to make her feel bad about the child's head if she can't do

> anything

> > about it. I also don't want to lie and say I think he's normal.

> >

> > What do I do? Anyone? Thanks! I'm going to post this on the

> > torticollis board, too.

> >

> >

> > , 19 mos, tort, plagio, DOC Band 5/7

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Hi -

I thought it was a pretty good deal too. Does she have a medical

coupon? The medical coupon might cover the cost of the band but I

am not sure. Maybe she should apply for a med. coupon for her

child. I think a person can have insurance through their employer

and still be eligible for a med. coupon as supplemental insurance.

It depends on her income I believe.

sent me a brochure about the Hanger band. The information was

good. told me that adjustments are done every 2-6 weeks. The

six weeks was a bit long to me, but he is also the one who told me I

could come in whenever I wanted to for adjustments. If you

explained the circumstances, maybe your friend could get a $300 rate

and they could split it into payments. He wasn't sure about the

exact price, he said $300-$600 and he was the one who said that the

price would be going up soon.

They have a scanner at the Tacoma facility.

I was extremely tempted to go with him as the orthotist and with the

Hanger over the DOC. Conversation 2 with him went good, I just

wasn't sure why he had said the possibility of 6 weeks between

adjustments but maybe he was giving me a broad range since it

depends on the rate of growth.

The drive for us to see him would have been about 3.5 hours one way

and time wise, I can fly to AZ in the same amount of time. Money is

a huge factor though .....it is night and day between the Hanger and

DOC. I decided to go with DOC mainly because I know that they are

experienced and I am hoping that the DOC will help with facial

asymmetry. The price is significant debt/struggle, but I didn't

want to say " what if " if I hadn't chosen the DOC.

For your friend, the Hanger might be just the right answer and

hopefully it will work out. As far as PT at Childrens, we see Anne

Lyons and I like her. I wish we could see her more frequently. She

is the one who diagnosed Alyssa with moderate tort, hypotonia and

dev. delays after the pediatrician declared Alyssa cured of the tort

(with no treatment) and missed the hypotonia and dev. delays.

Seeing Anne changed everything for me and had it not been for her, I

would have had no direction for treating the tort.

Doctors.........well, I can't help you too much there since I have

not had very good experiences. We saw Dr. in the

neurodevelopmental dept. at Childrens but I had to wait 4 months for

the appt. She is a developmental pediatrician and was the only one

who gave me an explanation of what Alyssa's issues meant.

It is so great that you are helping your friend : )

Diane

Alyssa

> > > I met a woman today with a 15 month old son. This child has

> > > completely UNTREATED torticollis! She has been asking her ped

> > about

> > > it since he was BORN! She was repeatedly told he was fine,

don't

> > > worry, etc. He also has moderate plagio.

> > >

> > > She is low income and in an HMO. Since the same thing happened

to

> > my

> > > son, I'm steamed on her behalf. My son is okay because I have

a

> > > computer, but she doesn't. She asked me all kinds of questions

> and

> > > asked me to look at her son. I saw pics of him and clearly

he's

> > had

> > > the tort since birth and the plagio since shortly after that.

> > >

> > > So...I told her I would try to find her a better doctor within

> her

> > > healthcare system and would give her whatever info I had.

Anyone

> > in

> > > Seattle with advice? She can get a referral to PT at

Children's

> > (if

> > > she can't I'll help her) but if she wants a helmet she'd

better

> > move

> > > fast.

> > >

> > > So...she's working a couple of jobs, at least, but she'd have

to

> > pay

> > > out of pocket for a helmet and drive to Portland every couple

of

> > > weeks (if she goes with Hangar). In my opinion the plagio is

> > > moderate, and if it were my child obviously I'd band him. But

he

> > > isn't my child and I'm not sure what to say. I don't want to

> > > encourage her to get a band if she can't afford it. I sure

don't

> > want

> > > to make her feel bad about the child's head if she can't do

> > anything

> > > about it. I also don't want to lie and say I think he's normal.

> > >

> > > What do I do? Anyone? Thanks! I'm going to post this on the

> > > torticollis board, too.

> > >

> > >

> > > , 19 mos, tort, plagio, DOC Band 5/7

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Guest guest

Do you have the number or the name of the specific Hangar facility

you are referring to? You are welcome to email me directly.

Yes, I believe she has a medical coupon for her son.

Ooh, is seeing Anne at Children's on Monday! Wow! I'm glad she

comes so highly recommended.

Thanks for your info. I will write back in a bit. Right now my son is

pouring water all over the bathroom.

, soaking wet, 19 mos, tort, plagio, DOC Band 5/7

> > > > I met a woman today with a 15 month old son. This child has

> > > > completely UNTREATED torticollis! She has been asking her ped

> > > about

> > > > it since he was BORN! She was repeatedly told he was fine,

> don't

> > > > worry, etc. He also has moderate plagio.

> > > >

> > > > She is low income and in an HMO. Since the same thing

happened

> to

> > > my

> > > > son, I'm steamed on her behalf. My son is okay because I have

> a

> > > > computer, but she doesn't. She asked me all kinds of

questions

> > and

> > > > asked me to look at her son. I saw pics of him and clearly

> he's

> > > had

> > > > the tort since birth and the plagio since shortly after that.

> > > >

> > > > So...I told her I would try to find her a better doctor

within

> > her

> > > > healthcare system and would give her whatever info I had.

> Anyone

> > > in

> > > > Seattle with advice? She can get a referral to PT at

> Children's

> > > (if

> > > > she can't I'll help her) but if she wants a helmet she'd

> better

> > > move

> > > > fast.

> > > >

> > > > So...she's working a couple of jobs, at least, but she'd have

> to

> > > pay

> > > > out of pocket for a helmet and drive to Portland every couple

> of

> > > > weeks (if she goes with Hangar). In my opinion the plagio is

> > > > moderate, and if it were my child obviously I'd band him. But

> he

> > > > isn't my child and I'm not sure what to say. I don't want to

> > > > encourage her to get a band if she can't afford it. I sure

> don't

> > > want

> > > > to make her feel bad about the child's head if she can't do

> > > anything

> > > > about it. I also don't want to lie and say I think he's

normal.

> > > >

> > > > What do I do? Anyone? Thanks! I'm going to post this on the

> > > > torticollis board, too.

> > > >

> > > >

> > > > , 19 mos, tort, plagio, DOC Band 5/7

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Hi -

Sorry....I can't figure out how to email people directly....the

number for is (253)383-4447. You can ask him if the medical

coupon will cover it. Also, he might have a name of a physician

that he makes the bands for that he can refer your friend to since

she will need a prescription. After talking to him, if you want

more names of other orthos, I have them. It would require more

travel time though.

I hope that you like Ann. I told a member on the tort board about

her and she took her son there but I never heard any feedback. What

I like most about her is that I really feel like she knows what she

is doing. She was able to tell me about Alyssa's degree of tilt,

range of motion and all sorts of info. about hypotonia and how it

affects a child. She also noticed Alyssa's head shape and made

reference to a helmet. She noticed all sorts of things about

Alyssa's positioning, weight bearing, hand use, etc. With as many

doctors that I have seen, Ann was the one who really made me aware

of the issues we are dealing with. We see her once a month and I

think we have been there about 4-5 times so far. I only have one

more visit authorized. The local PT we see knows nothing about tort

which is frustrating but she has helped with Alyssa's low tone.

Anyway, let me know if you need more info. The Hanger letter and

brochure from says that it works best from 4-18 months of age

but can be used up to 24 mo. The brochure he sent is about plagio,

tort, cranio, PT, and about the Hanger band, how the scanning system

works, how the band is made, etc.

There is also a guy who used to work in the Tacoma office that has

moved to my side of the mountains. You could call and pick his

brain too : ) but I don't know if your friend wants to travel this

far.

Diane

Alyssa

WA

> > > > > I met a woman today with a 15 month old son. This child

has

> > > > > completely UNTREATED torticollis! She has been asking her

ped

> > > > about

> > > > > it since he was BORN! She was repeatedly told he was fine,

> > don't

> > > > > worry, etc. He also has moderate plagio.

> > > > >

> > > > > She is low income and in an HMO. Since the same thing

> happened

> > to

> > > > my

> > > > > son, I'm steamed on her behalf. My son is okay because I

have

> > a

> > > > > computer, but she doesn't. She asked me all kinds of

> questions

> > > and

> > > > > asked me to look at her son. I saw pics of him and clearly

> > he's

> > > > had

> > > > > the tort since birth and the plagio since shortly after

that.

> > > > >

> > > > > So...I told her I would try to find her a better doctor

> within

> > > her

> > > > > healthcare system and would give her whatever info I had.

> > Anyone

> > > > in

> > > > > Seattle with advice? She can get a referral to PT at

> > Children's

> > > > (if

> > > > > she can't I'll help her) but if she wants a helmet she'd

> > better

> > > > move

> > > > > fast.

> > > > >

> > > > > So...she's working a couple of jobs, at least, but she'd

have

> > to

> > > > pay

> > > > > out of pocket for a helmet and drive to Portland every

couple

> > of

> > > > > weeks (if she goes with Hangar). In my opinion the plagio

is

> > > > > moderate, and if it were my child obviously I'd band him.

But

> > he

> > > > > isn't my child and I'm not sure what to say. I don't want

to

> > > > > encourage her to get a band if she can't afford it. I sure

> > don't

> > > > want

> > > > > to make her feel bad about the child's head if she can't

do

> > > > anything

> > > > > about it. I also don't want to lie and say I think he's

> normal.

> > > > >

> > > > > What do I do? Anyone? Thanks! I'm going to post this on

the

> > > > > torticollis board, too.

> > > > >

> > > > >

> > > > > , 19 mos, tort, plagio, DOC Band 5/7

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