new member - need advice - helmet/band or not??

[Guest guest]

le,

We were in the same boat as you...our daughter is 8 1/2 months old and will

be fitted(soon we hope) for a DOC headband. If I were you, I would check

with the insurance company on if they cover the device. Then, you should

use your best judgement. We were told that if her head hadn't rounded out

by 6 months, something needed to be done...we made the decision to have this

done at about 5 months. Ultimately, only you know what's best for your

child. FYI, the helmet is currently undergoing FDA approval and is

supposedly not being manufactured. Cranialtechnologies.com is a terrific

website to answer alot of your questions and alot of support from other

parents going through this also.

Please let us know how everything goes.

----Original Message Follows----

From: danielle_white2@...

Reply-Plagiocephalyegroups

Plagiocephalyegroups

Subject: new member - need advice - helmet/band or not??

Date: Tue, 18 Apr 2000 16:35:17 -0000

Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has

a twin sister (Elise). He REALLY prefers his right side, and now has

a very bad flat spot on the back right side. His face looks fine -

if you look close you can see the forehead is out a little more on

one side. We have tried all the tricks in the book to get him to lay

on the left side. Currently he sleeps in his swing (reclined as far

as it goes) with a towel under him on the right side. That works

okay.

The pediatrician kept telling me it will round out a little better

when he is more upright (sitting, crawling, walking...) I told him I

wanted him to see a specialist, so he made the referral to a dr. in

the craniofacial clinic at the local Children's Hospital. Hunter saw

him yesterday. My husband and I did all kinds of research and

checked out tons of web sites and came to terms with the fact that he

would need a helmet or DOC band. Well, when we met with the dr., we

were surprised to find that he doesn't like the the helmets/bands.

He said most insurances don't pay for them, they're about $10,000 and

he feels the pressure they place on the opposite side of the skull

could prematurely close the sutures and cause bigger problems. I

don't really agree with him. He said we need to continue being

aggressive with positioning so he doesn't get worse, and he MIGHT get

a LITTLE better, but we should live with his head shape the way it

is - because thousands of kids look like this and it's no big deal.

I would like to hear people's opinions. Is there anyone who's done

the helmet or band who feels it didn't make that much of a change?

Is there anyone who didn't get a helmet/band who has an older kid now

(one year or older maybe??) who thinks the head looks okay or wishes

they had gotten a helmet/band??

We know time is running out - we are distraught - do we leave it the

way it is? or get another dr. and get the ball rolling with the

helmet or band???

Help!! Thanks.

le (Hunter & Elise) from Wisconsin

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has

a twin sister (Elise). He REALLY prefers his right side, and now has

a very bad flat spot on the back right side. His face looks fine -

if you look close you can see the forehead is out a little more on

one side. We have tried all the tricks in the book to get him to lay

on the left side. Currently he sleeps in his swing (reclined as far

as it goes) with a towel under him on the right side. That works

okay.

The pediatrician kept telling me it will round out a little better

when he is more upright (sitting, crawling, walking...) I told him I

wanted him to see a specialist, so he made the referral to a dr. in

the craniofacial clinic at the local Children's Hospital. Hunter saw

him yesterday. My husband and I did all kinds of research and

checked out tons of web sites and came to terms with the fact that he

would need a helmet or DOC band. Well, when we met with the dr., we

were surprised to find that he doesn't like the the helmets/bands.

He said most insurances don't pay for them, they're about $10,000 and

he feels the pressure they place on the opposite side of the skull

could prematurely close the sutures and cause bigger problems. I

don't really agree with him. He said we need to continue being

aggressive with positioning so he doesn't get worse, and he MIGHT get

a LITTLE better, but we should live with his head shape the way it

is - because thousands of kids look like this and it's no big deal.

I would like to hear people's opinions. Is there anyone who's done

the helmet or band who feels it didn't make that much of a change?

Is there anyone who didn't get a helmet/band who has an older kid now

(one year or older maybe??) who thinks the head looks okay or wishes

they had gotten a helmet/band??

We know time is running out - we are distraught - do we leave it the

way it is? or get another dr. and get the ball rolling with the

helmet or band???

Help!! Thanks.

le (Hunter & Elise) from Wisconsin

[Guest guest]

le,

>He said most insurances don't pay for them, they're about $10,000

WOW. He must be referring to our luxury model, which has a spanking gold

buckle and your child's name spelled out in semi-precious stones across the

front.

Seriously though, the prices the others have mentioned are about right -

~$2500 for a DOC Band, less for helmets. DOC Band prices vary by location.

And regarding insurance coverage, it can be very difficult (as all the

parents here will tell you) - but as far as our patients go, around 90% get

at least part of the costs covered. How easily your provider will cooperate

with you will depend on who they are, the severity of the plagiocephaly, and

whether you fight, fight, fight!

Hodges

Cranial Tech

[Guest guest]

Hi le!

I had a ped tell me basically the same thing - his head will be

deformed - only she didn't even know there were helmets and bands

available! I also contacted a neurologist via email and asked his

opinion, which was the same as your Dr.'s. He was against them &

that they do as well as positioning. When I asked him if there was

cumulative benefit, he couldn't answer! After researching our local

helmet and the DOC band, we chose to go 250 miles away to Dallas for

the DOC, without regard to cost or convience for us. The DOC band

does not put anymore pressure on his precious head than when he slept

or leaned in the bouncer/carseat/swing, etc. We did aggressively

position from 2 months until he got the band (at ~6 months) and we

did see great results - mostly just rounding the back, not much in

ear alignment and facial asymmetry. And, we are ABSOLUTELY pleased

with the DOC band, it was the right decision for our son and for our

family (and it's only been a month!). (See my recent update posting.)

Our Neuro said that plagiocephaly is one of the better things that

they see - so much of the things they deal with are uncorrectable!

He also said that if it is left untreated it CAN cause eye and ear

problems. Then, it would take surgery to correct. ANd he would

write our insurance company and tell them that if they deny

coverage. Some insurance companies deny, but most cover on appeal

and there are plenty of parents our there *here* that can help you

win an appeal. Believe it or not, some insurance companies are as

misinformed as the Dr. you saw - they make the denial and then, faced

with the facts, pay up!

We went ahead without precertification (we did check to see if there

would be a penalty for starting without it) and we'd still be waiting

(going on 3 months) if we hadn't. Ours cost $2600 all visits/and

physical therapy included. Travel, not included. But even if not

covered, these things ARE tax deductible - posted the links to

the IRS website - with a few rules (of course!). I can tell you that

the bands and helmets do not even come near the

$10,000 mark, even if two are required!

The neurologist who says to " get used to it " and " learn to live with

it " is a dinasour! RUN!!!(smile) Get a second opinion! There are

two DOC clinics in WI and if you click on the clinic sites, you will

also get a list of specialists who have dealt with the DOC band and

can possibly show you examples of before/after casts and SHOW you

what they can do. And give references. Also, if the DOC is not for

you or too far, check out the orthotic/prosthetic listings in the

yellow pages. Call them and ask if they do plagiocephaly helmets and

ask for the names of Dr.s who write the Rx - you'll weed out the nay-

sayers in the process and get help, not dinasour poop!

The DOC has worked well for us, and I know the helmets are working

too, whatever the local type is. Positioning also helps in some

cases, but you are beyond that now. Hunter is lucky to have parents

so informed and concerned. It is a tough decision, but trust

yourselves.

I used to live in Waukesha County - actually raised there (born in

Milwaukee). I have been in OK 10 years now and miss Wisconsin so

much, even the high taxes! If I could get my husband to move there

(he's a Texan), we would be there in a minute!

Sorry so lengthy!

Tami

[Guest guest]

Tami, thank you for your great advice. My husband and I were both raised in

West Allis and Milwaukee, and now have been living in Waukesha for 2 1/2

years!!!

On Tue, 18 Apr 2000 18:57:57 -0000, Plagiocephalyegroups wrote:

Hi le!

I had a ped tell me basically the same thing - his head will be

deformed - only she didn't even know there were helmets and bands

available! I also contacted a neurologist via email and asked his

opinion, which was the same as your Dr.'s. He was against them &

that they do as well as positioning. When I asked him if there was

cumulative benefit, he couldn't answer! After researching our local

helmet and the DOC band, we chose to go 250 miles away to Dallas for

the DOC, without regard to cost or convience for us. The DOC band

does not put anymore pressure on his precious head than when he slept

or leaned in the bouncer/carseat/swing, etc. We did aggressively

position from 2 months until he got the band (at ~6 months) and we

did see great results - mostly just rounding the back, not much in

ear alignment and facial asymmetry. And, we are ABSOLUTELY pleased

with the DOC band, it was the right decision for our son and for our

family (and it's only been a month!). (See my recent update posting.)

Our Neuro said that plagiocephaly is one of the better things that

they see - so much of the things they deal with are uncorrectable!

He also said that if it is left untreated it CAN cause eye and ear

problems. Then, it would take surgery to correct. ANd he would

write our insurance company and tell them that if they deny

coverage. Some insurance companies deny, but most cover on appeal

and there are plenty of parents our there *here* that can help you

win an appeal. Believe it or not, some insurance companies are as

misinformed as the Dr. you saw - they make the denial and then, faced

with the facts, pay up!

We went ahead without precertification (we did check to see if there

would be a penalty for starting without it) and we'd still be waiting

(going on 3 months) if we hadn't. Ours cost $2600 all visits/and

physical therapy included. Travel, not included. But even if not

covered, these things ARE tax deductible - posted the links to

the IRS website - with a few rules (of course!). I can tell you that

the bands and helmets do not even come near the

$10,000 mark, even if two are required!

The neurologist who says to " get used to it " and " learn to live with

it " is a dinasour! RUN!!!(smile) Get a second opinion! There are

two DOC clinics in WI and if you click on the clinic sites, you will

also get a list of specialists who have dealt with the DOC band and

can possibly show you examples of before/after casts and SHOW you

what they can do. And give references. Also, if the DOC is not for

you or too far, check out the orthotic/prosthetic listings in the

yellow pages. Call them and ask if they do plagiocephaly helmets and

ask for the names of Dr.s who write the Rx - you'll weed out the nay-

sayers in the process and get help, not dinasour poop!

The DOC has worked well for us, and I know the helmets are working

too, whatever the local type is. Positioning also helps in some

cases, but you are beyond that now. Hunter is lucky to have parents

so informed and concerned. It is a tough decision, but trust

yourselves.

I used to live in Waukesha County - actually raised there (born in

Milwaukee). I have been in OK 10 years now and miss Wisconsin so

much, even the high taxes! If I could get my husband to move there

(he's a Texan), we would be there in a minute!

Sorry so lengthy!

Tami

_______________________________________________________

Get 100% FREE Internet Access powered by Excite

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[Guest guest]

Gee! It IS a small world! I went to Waukesha Public Schools except

my Sr. year when we moved to Mukwonago. My older brother and sister

and a few aunts and cousins live in Waukesha. My parents now live in

Delafield and my younger brother lives in Eagle.

We actually get ville brats down here and I just grilled

some. One of the few things I can get here that remind me of home.

We just got frozen custard last year - some wayward Wisconsinite

opened up shop and we go there weekly with the kids. It's not

LeDuc's, but pretty close.

I was teasing my Dad - I told him I was going to bring the kids up

for the length of treatment and camp out at their house - so we

wouldn't have to travel so far each week. I don't think you'll have

to travel weekly if you chose to go the DOC route. At 7 or 7-1/2

months, I think it is about every 2 weeks.

Take care, keep us posted, and let us know if you have more

questions. This group has been a huge blessing and we all support

each other.

Tami

[Guest guest]

le,

We are in a similar predicament.... Cameron is going to be 7 months next week and we have our casting for a helmet on the 28th. Our pediatrician doesn't think we need to do anything and that his head will round out, and the craniofacial specialist we saw says his head will NOT round out any further and we could go with the helmet or not... our choice. We've decided to go for it, but we keep second guessing ourselves while we're waiting for our appointment. The costs (in Seattle) are as follows:

Helmet casting/manufacturing = $619 + $26 for the strap

Physician helmet fitting = $550

3-4 follow up visits = $82 each

Total is about $1500

Hope that helps. I'd say get a second opinion. We've thought about getting third to be the tie-breaker! -Pam

----- Original Message -----

From: danielle_white2@...

Plagiocephalyegroups

Sent: Tuesday, April 18, 2000 11:35 AM

Subject: new member - need advice - helmet/band or not??

Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has a twin sister (Elise). He REALLY prefers his right side, and now has a very bad flat spot on the back right side. His face looks fine - if you look close you can see the forehead is out a little more on one side. We have tried all the tricks in the book to get him to lay on the left side. Currently he sleeps in his swing (reclined as far as it goes) with a towel under him on the right side. That works okay. The pediatrician kept telling me it will round out a little better when he is more upright (sitting, crawling, walking...) I told him I wanted him to see a specialist, so he made the referral to a dr. in the craniofacial clinic at the local Children's Hospital. Hunter saw him yesterday. My husband and I did all kinds of research and checked out tons of web sites and came to terms with the fact that he would need a helmet or DOC band. Well, when we met with the dr., we were surprised to find that he doesn't like the the helmets/bands. He said most insurances don't pay for them, they're about $10,000 and he feels the pressure they place on the opposite side of the skull could prematurely close the sutures and cause bigger problems. I don't really agree with him. He said we need to continue being aggressive with positioning so he doesn't get worse, and he MIGHT get a LITTLE better, but we should live with his head shape the way it is - because thousands of kids look like this and it's no big deal.I would like to hear people's opinions. Is there anyone who's done the helmet or band who feels it didn't make that much of a change? Is there anyone who didn't get a helmet/band who has an older kid now (one year or older maybe??) who thinks the head looks okay or wishes they had gotten a helmet/band??We know time is running out - we are distraught - do we leave it the way it is? or get another dr. and get the ball rolling with the helmet or band???Help!! Thanks.le (Hunter & Elise) from Wisconsin

[Guest guest]

$10,000??

THe DOC band does cost a couple of thousand, but it is different than the

helmet, too (both work well -- different time-lines in correction time, and

depends on how severe the problem is.............)

Helmet costs are generally under $1,000.

Our neurosurgeon reassured my husband that the therapy is so minute (very

little pressure at any given time) that any potential problems (like

premature fusion of the sutures) just don't happen -- at least not anything

to be concerned about (and this was also put into our letter of medical

necessity for our insurance).

Cranial Technologies did a study on brain growth -- it's probably in the

files section, or can be found at the plagiocephaly.org site (sorry I don't

remember the title right off hand). No adverse affects were found in this

study.

Cranial Technologies (the makers of the DOC band) have a listing of drs. who

are familiar with the band listed in their clinic locations site. Cranial

Tech will NOT Band a child who has a mild case of plagiocephaly. The drs.

familiar with the band will give you options that are not biased towards the

type of therapy you are seeking, but will work with helping you find the

best possible way to help your son if he needs it.

Just some things to think about...

good luck

(aka " Kali " )

-----Original Message-----

From: danielle_white2@... [mailto:danielle_white2@...]

Sent: Tuesday, April 18, 2000 12:35 PM

Plagiocephalyegroups

Subject: new member - need advice - helmet/band or not??

Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has

a twin sister (Elise). He REALLY prefers his right side, and now has

a very bad flat spot on the back right side. His face looks fine -

if you look close you can see the forehead is out a little more on

one side. We have tried all the tricks in the book to get him to lay

on the left side. Currently he sleeps in his swing (reclined as far

as it goes) with a towel under him on the right side. That works

okay.

The pediatrician kept telling me it will round out a little better

when he is more upright (sitting, crawling, walking...) I told him I

wanted him to see a specialist, so he made the referral to a dr. in

the craniofacial clinic at the local Children's Hospital. Hunter saw

him yesterday. My husband and I did all kinds of research and

checked out tons of web sites and came to terms with the fact that he

would need a helmet or DOC band. Well, when we met with the dr., we

were surprised to find that he doesn't like the the helmets/bands.

He said most insurances don't pay for them, they're about $10,000 and

he feels the pressure they place on the opposite side of the skull

could prematurely close the sutures and cause bigger problems. I

don't really agree with him. He said we need to continue being

aggressive with positioning so he doesn't get worse, and he MIGHT get

a LITTLE better, but we should live with his head shape the way it

is - because thousands of kids look like this and it's no big deal.

I would like to hear people's opinions. Is there anyone who's done

the helmet or band who feels it didn't make that much of a change?

Is there anyone who didn't get a helmet/band who has an older kid now

(one year or older maybe??) who thinks the head looks okay or wishes

they had gotten a helmet/band??

We know time is running out - we are distraught - do we leave it the

way it is? or get another dr. and get the ball rolling with the

helmet or band???

Help!! Thanks.

le (Hunter & Elise) from Wisconsin

[Guest guest]

le:

We were in a similar situation with twins.... always wanted to look

to the right and we learn that was called torticollis - a

tightening/shortening of the neck muscles. If not treated by physical

therapy, it can promote plagiosephaly (the flat spot on back, bossing on

front). Twins are very susceptible due to cramped positions before birth,

usually being born premature, moms on bedrest, NICU stays, etc.

had all of the above and we too were assured by our ped that his head would

round out and that he was " well within cosmetic norms " . We tried to change

his shape by repositioning, but as they get older (ours are now 8 months),

they get stronger and can get out of almost any position we put him in!

I urge you to contact a cranial facial specialist/neurologist for a second

opinion. Read all that you can. This group is very informative. Look at

the pictures posted. Read the research links.

You must be comfortable with your final decision. We have had people

criticize us as being too concerned with " looks " . With all due respect to

the medical complications that can result from not treating this, I AM

concerned with looks. If he has crooked teeth, we will put braces on him.

Will they be uncomfortable, yes. Will he be better off in the end, yes.

Why is this different? You need to decide and then find a medical

professional to support your decision.

will be cast for the DOC band this Thursday and it is only because

we pushed for it. You are the best advocate for your child. It is not

easy when the primary medical source for your child does not agree with you.

Glad you found the group. Hope you gain the information you need.

Good Luck,

Sue in Cleveland

----- Original Message -----

From: <danielle_white2@...>

<Plagiocephalyegroups>

Sent: Tuesday, April 18, 2000 12:35 PM

Subject: new member - need advice - helmet/band or not??

> Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has

> a twin sister (Elise). He REALLY prefers his right side, and now has

> a very bad flat spot on the back right side. His face looks fine -

> if you look close you can see the forehead is out a little more on

> one side. We have tried all the tricks in the book to get him to lay

> on the left side. Currently he sleeps in his swing (reclined as far

> as it goes) with a towel under him on the right side. That works

> okay.

>

> The pediatrician kept telling me it will round out a little better

> when he is more upright (sitting, crawling, walking...) I told him I

> wanted him to see a specialist, so he made the referral to a dr. in

> the craniofacial clinic at the local Children's Hospital. Hunter saw

> him yesterday. My husband and I did all kinds of research and

> checked out tons of web sites and came to terms with the fact that he

> would need a helmet or DOC band. Well, when we met with the dr., we

> were surprised to find that he doesn't like the the helmets/bands.

> He said most insurances don't pay for them, they're about $10,000 and

> he feels the pressure they place on the opposite side of the skull

> could prematurely close the sutures and cause bigger problems. I

> don't really agree with him. He said we need to continue being

> aggressive with positioning so he doesn't get worse, and he MIGHT get

> a LITTLE better, but we should live with his head shape the way it

> is - because thousands of kids look like this and it's no big deal.

>

> I would like to hear people's opinions. Is there anyone who's done

> the helmet or band who feels it didn't make that much of a change?

> Is there anyone who didn't get a helmet/band who has an older kid now

> (one year or older maybe??) who thinks the head looks okay or wishes

> they had gotten a helmet/band??

>

> We know time is running out - we are distraught - do we leave it the

> way it is? or get another dr. and get the ball rolling with the

> helmet or band???

>

> Help!! Thanks.

>

> le (Hunter & Elise) from Wisconsin

>

>

> ------------------------------------------------------------------------

> Get paid for the stuff you know!

> Get answers for the stuff you don't. And get $10 to spend on the site!

> 1/2200/3/_/689409/_/956075773/

> ------------------------------------------------------------------------

>

>

[Guest guest]

casting and helmet costs us under 500.00

christi

-----Original Message-----From: Doug & Pam <hambug@...>Plagiocephalyegroups <Plagiocephalyegroups>Date: Tuesday, April 18, 2000 8:37 PMSubject: Re: new member - need advice - helmet/band or not??

le,

We are in a similar predicament.... Cameron is going to be 7 months next week and we have our casting for a helmet on the 28th. Our pediatrician doesn't think we need to do anything and that his head will round out, and the craniofacial specialist we saw says his head will NOT round out any further and we could go with the helmet or not... our choice. We've decided to go for it, but we keep second guessing ourselves while we're waiting for our appointment. The costs (in Seattle) are as follows:

Helmet casting/manufacturing = $619 + $26 for the strap

Physician helmet fitting = $550

3-4 follow up visits = $82 each

Total is about $1500

Hope that helps. I'd say get a second opinion. We've thought about getting third to be the tie-breaker! -Pam

----- Original Message -----

From: danielle_white2@...

Plagiocephalyegroups

Sent: Tuesday, April 18, 2000 11:35 AM

Subject: new member - need advice - helmet/band or not??

Hi!! My 7-month old son, Hunter, was born 6 1/2 weeks early and has a twin sister (Elise). He REALLY prefers his right side, and now has a very bad flat spot on the back right side. His face looks fine - if you look close you can see the forehead is out a little more on one side. We have tried all the tricks in the book to get him to lay on the left side. Currently he sleeps in his swing (reclined as far as it goes) with a towel under him on the right side. That works okay. The pediatrician kept telling me it will round out a little better when he is more upright (sitting, crawling, walking...) I told him I wanted him to see a specialist, so he made the referral to a dr. in the craniofacial clinic at the local Children's Hospital. Hunter saw him yesterday. My husband and I did all kinds of research and checked out tons of web sites and came to terms with the fact that he would need a helmet or DOC band. Well, when we met with the dr., we were surprised to find that he doesn't like the the helmets/bands. He said most insurances don't pay for them, they're about $10,000 and he feels the pressure they place on the opposite side of the skull could prematurely close the sutures and cause bigger problems. I don't really agree with him. He said we need to continue being aggressive with positioning so he doesn't get worse, and he MIGHT get a LITTLE better, but we should live with his head shape the way it is - because thousands of kids look like this and it's no big deal.I would like to hear people's opinions. Is there anyone who's done the helmet or band who feels it didn't make that much of a change? Is there anyone who didn't get a helmet/band who has an older kid now (one year or older maybe??) who thinks the head looks okay or wishes they had gotten a helmet/band??We know time is running out - we are distraught - do we leave it the way it is? or get another dr. and get the ball rolling with the helmet or band???Help!! Thanks.le (Hunter & Elise) from Wisconsin

[Guest guest]

Get another doctors opinion and get the helmet/band if you are not

comfortable with your babies head shape. The head will not round out on its

own after 6 months of age. Hope this info helps.