New to the group

[Guest guest]

Is it really true that the band doesn't seem to bother the kiddos? I am

still trying to imaging my son tolerating it well.

:

The vast majority of these kids get thru the first (second, third.......)

day without a care in the world!! ) The casting usually isn't any

fun (but don't give up hope, some get thru without a tear!), but very few

have a negative reaction to bands/helmets.

As a matter of fact, I think I'm going to start a poll on the topic!!

)

Kendra

[Guest guest]

:

I worried and worried about the casting experience for WEEKS before we went.

is so intolerate of so many things and does NOT like to be restrained!

So I worried about it and talked my Mom into going with me in case I couldn't

handle it by myself. I couldn't believe how easy it turned out to be.

sat on my Mom's lap and I stood in front of her feeding her cheerios and

singing to her to distract her. I also brought a few of her favorite toys to

distract her. The casting process was very quick for our helmet - I'm not

sure how long it takes for the band. After that was over I worried and

worried about how she would handle the helmet. She HATES hats and doesn't

like people messing with her head. Needless to say I predicted the worst!

Fortunately that has a happy ending as well. We brought the helmet home,

slipped it on her head, she touched it twice and that was the last time she

acknowledged that it was on her head!!! Now she fusses while I am cleaning it

because she wants it back on - believe me, when the orthotist told us that

might happen I did NOT believe him!

That has been our experience. I know that everyone is different, but is

living proof that even intolerate and quick to get frustrated babies can

handle the situation with flying colors!

Good luck and keep us posted!!

Marci (Mom to )

[Guest guest]

As a matter of fact, I think I'm going to start a poll on the topic!! )

Kendra

 

Great idea Kendra!

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

From: & Kendra [sMTP:kbgarv@...]

Sent: Thursday, December 21, 2000 6:07 PM

Plagiocephalyegroups

Subject: Re: New to the Group

Is it really true that the band doesn't seem to bother the kiddos?  I am

still trying to imaging my son tolerating it well.

:

The vast majority of these kids get thru the first (second, third.......) day without a care in the world!! )  The casting usually isn't any fun (but don't give up hope, some get thru without a tear!), but very few have a negative reaction to bands/helmets.

As a matter of fact, I think I'm going to start a poll on the topic!! )

Kendra

 

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Click Here!

[Guest guest]

BlankWelcome Janet and all other new members we recently added to the group.

It seems as if every time an article about toxic molds appears in a paper or

magazine, we add a dozen or so new members. While I am sad that some of you

come to this list as victims of mycotoxin exposure, I rejoice that folks

like Janet are reaching out to the chemically sensitive and designing homes

and offices we can continue to work in, rather than end up excluded or

disabled. This may be the only way our work force can survive the constant

assaults - to redesign and rethink each and every component of our work and

living space. An Interior Designer with MCS who creates homes for the

chemically sensitive understands many issues that others, who are not

sensitive don't grasp. I especially worry about the thousands of elderly

and infirm who move to Florida to retire, only to become sickened by molds

and other contaminants in their condos because Florida refuses to deal with

this issue and put information out for seniors.

Several months ago, my mother was hospitalized for gallbladder surgery. She

was given room 327 at TMRMC, our local hospital. Not only were we greeted

by an extremely strong cleaning product odor from the bathroom, but there

was mold behind the wallpaper. Here was my mom just out of surgery and

needing to clear her lungs and system of all the chemicals used during

surgery - and they put her into a stinking room with mold. Within an hour,

she could barely breathe and I was scratching and feeling that tingly

feeling around my lips. Of course, I asked for another room, but was told

they had no other rooms available. So we were stuck trying to tough it out.

My sister had gone home for the night, relying on me to stay over and care

for our mom. I spent a very uncomfortable night, pacing and going outside

for fresh air and trying to sleep in between - yet afraid to fall asleep in

case my mom couldn't breathe. My mom however, couldn't go out so she became

extremely congested and so hoarse that she couldn't talk. By the time I

could get her checked out the next morning, she was wheezy, totally hoarse,

had a migraine and felt lousy. Is this any way to run a hospital?

We need environmental designers to develop and implement plans for medical

facilities - plans for doctor's offices, clinics and other places that sick

people will be getting medical treatment. If more of us become vocal in

our needs and explain to medical providers why we are having problems,

perhaps we can change things. Recently, Sharon wrote and told me about her

problems in Wal-Mart during the holidays - well, a few days ago, my son

needed to go to Wal-Mart and I took him. Boy was I ever sorry. We walked

in and went directly to the sporting goods department where he found a

skating helmet he liked within moments. We weren't there three minutes

before we were in line and waiting to check out. But something was wrong

and I could feel it. The agitation level was rising and I found myself

starting to fly into a rage. Quickly, I took his helmet, went to the photo

counter and paid for it so we could get out of there. If I had stayed in

line just a few more minutes, I would have been in a full blown rage.

What triggered the rage? I have no way of knowing - but I do know this - I

am staying out of Wal-Mart from now on. There is something in that store

that has a neurological effect on me and it was hours before I felt better.

Then, I was left with a hangover type feeling - you know, headache and sort

of out of it, hands all shaky and tired all over. Had I not experienced

this before, I would have been scared to death.

Barbara

[Guest guest]

.. I especially worry about the thousands of elderly

> and infirm who move to Florida to retire, only to become sickened

by molds

> and other contaminants in their condos because Florida refuses to

deal with

> this issue and put information out for seniors.

Florida is probably the most mold infested state in the US, there are

more IAQ consultants and remediation companies here than anywhere.

Why ?

Well lets start with the Architect and work our way down shall we !!

The main problems I see in florida are:-

Poor construction and design

Vinyl wallpaper creating a moisture barrier, very popular in

hospitals and nursing homes.

Wet carpets harboring many forms of life

Very lax contractor laws and regulations allowing anybody to repair

your property, all you need is a drivers licence and $60 worth of

liability insurance.

I have put together my company website, there is much information on

there and the links are reserved for qualified Drs, Attorneys etc etc.

If you have knowledge of such please send me there info so that I can

link them.

Take a tour of the site www.geocities.com/sickbuilding

take a look at the picture on the contact us page, its that old vinyl

wallpaper again.

Comments welcome

Mark

[Guest guest]

In a message dated 3/2/01 7:15:58 PM Pacific Standard Time, chadandnik@... writes:

? The closest place for us to go will be Gillette's Childrens Hospital in St. which is a 6 1/2 hr. drive. And from what I understand this will be a once a week visit type thing?? What is the average time period that they wear the helmet? is already 9 months old, this is another dilima. I'm thinking I need to get this started now if we are going to do it!

Any answers would be greatly appreciated!

Thank you,

Nikki

Roseau, MN

Nikki - A pediatrician isn't necessarily the next best step! My family practice doctor would spot our obvious tort/plagio before our x-ped. Unless that ped will refer you for treatment and I would ask that before making the trip over. You really need to see a pediatric neurologist, neurosurgeon and craniofacial specialist. Most have x-rays, CT or MRI to verify sutures are open, but not all. Some may have other doctors to recommend. I'm in La Crosse, WI and don't have any access to a craniofacial specialist here! Are you any closer to the Duluth area?

Here is the web site for Gillette's. Gillette Children's Specialty Healthcare

If closer to the Duluth area or any other major city, you could check with a local orthotics person for a local helmet or the STAR Band. I think Madison, WI is the closest DOC Band facility.

9 months is not to late to start at all but the sooner the better. You may be able to go with biweekly adjustments. Really depends on the growth and how quickly you see changes. Hey, at least spring is coming so travel will only get better. Been a long winter!

Tammy & 12/8/99

[Guest guest]

Hi and welcome,

My son started DOC band treatment at 9 months of age. he's been in it for a

month now and I am noticing some changes. If I were you I would go with you

insticts (which sounds like you are) and getting to the bottom of your

concerns. Many of us here have all heard a doctor tell us " not to worry " one

time or another but we still followed our hearts and knew something wasn't

right. It doesn't hurt to try. If problems aren't corrected your son could

have bigger problems in the future such as TMJ, trouble chewing, speaking,

off set face.......etc. Trust your mothering insincts and good luck to you.

Let us know how things go.

Heidi & Luke

Phx, AZ

[Guest guest]

Nikki -

Welcome to the group - I'm glad you found us!!

I would try to get in to see a pediatric neurosurgeon or cranial facial

specialist (plastic surgeon) as soon as possible. 9 months is just a little

bit old to be starting, but there are many people here (myself included) who

started at 9 months or later! I would try to push forward with a specialist

as soon as possible so if it is necessary to do correction you can start as

soon as possible. As far as if there are problems down the line if you do not

correct the answer is " possibly " . Things such as TMJ, vision problems, speech

and language delays etc, are the main concerns with the parents in this group.

I'm sure you will get a number of wonderful replies from others here - please

keep us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

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

From: Lee Chestnut <lee_chestnut@...>

< >

Date: Saturday, April 28, 2001 10:07 AM

Subject: [] New to the group

>>>>>>>>Welcome Lee, when you have any questions, just jump right in and ask.

Not that we will have the answers, but we sure do try to help!!! LOL, ~>Becky M.

Hello everyone! I was pleased to find this group of people whose lives are

affected by CMT. Finally someone to share thoughts and feelings with. My

name is Lee and I live currently in Houston, Texas althought I am originally

from Florida. I was formally diagnosed with CMT Type 1 about 5 years ago,

although I began having significant symptoms in the late 80's. I am now 54.

I don't have any particular questions. I just wanted to say Hi to everyone

and offer my support. As far as CMT goes, it runs in my family, on my

mother's side. Because of CMT I have had to give up karate, which I took

until my 40's, and playing drums, which I did professionally until I turned

45. At least I got my licks in before I became unable to pivot and kick, or

hold a drumstick.

Please e-mail me if you wish, or reply to this post. God bless and thanks

for the chance to share.

Lee

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Lee,

Welcome to the group. I think you will find this an informative group! You

can go back and read prior postings or visit our archives section. Everyone

has something to share, and perhaps it will in turn help someone else.

You must be a nice person since you are from Texas! HaHa! I live in East

Texas. I'm 41 years old, and like you CMT runs in my family on my mother's

side also. I was officially diagnosed at age 36. I have had surgery on

both of my feet recently.

Again, welcome and feel free to participate in discussions anytime.

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

From: Lee Chestnut <lee_chestnut@...>

< >

Sent: Saturday, April 28, 2001 10:11 AM

Subject: [] New to the group

> Hello everyone! I was pleased to find this group of people whose lives are

> affected by CMT. Finally someone to share thoughts and feelings with. My

> name is Lee and I live currently in Houston, Texas althought I am

originally

> from Florida. I was formally diagnosed with CMT Type 1 about 5 years ago,

> although I began having significant symptoms in the late 80's. I am now

54.

>

> I don't have any particular questions. I just wanted to say Hi to everyone

> and offer my support. As far as CMT goes, it runs in my family, on my

> mother's side. Because of CMT I have had to give up karate, which I took

> until my 40's, and playing drums, which I did professionally until I

turned

> 45. At least I got my licks in before I became unable to pivot and kick,

or

> hold a drumstick.

>

> Please e-mail me if you wish, or reply to this post. God bless and thanks

> for the chance to share.

>

> Lee

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

>

[Guest guest]

Welcome Lee;

Thanks; for sharing your story. I'm glad you have found this site. I

consider this site as my life line. It's great to hear from other which are

living with CMT.

It's wonderful to hear your achievements through life. I know the

difficulties with not being able to still perform the things we love. My

most enjoyable time was, being a rescue scuba diving. I treasure my memories

& experiences. My passion for enjoyment during my lifetime surges through

me. I've changed my belief system 3yrs. ago. I must do what I can, while

I can. Most of all enjoy each day & live it.

Have fun.. Welcome Lee

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

> Since he was born, he's preferred to sleep and look to his

> right side. Because of this his face on that side is flattened

and

> his skull is abnormal in shape. He's extremely stubborn, and

> fusses if you try to move his head.

Hi

Your son sounds like my dd Nina. She had torticollis (does he

have tort? could explain why he fusses when you try to move his

head) which caused her to favor looking to the right, flattening

that side of her head. She was diagnosed at 4 months, at which

time we started 2x/week physical therapy, plus all of the other

things you mentioned you were doing. Her plagio was severe at

that time and we saw good improvement however, at 6 1/2

months, she still had moderate plagio and quite noticable facial

assymmetries. (look at her pictures in the files section) As she

sits up more and is trying to crawl, I continue to see some

improvement in the face and some softening of the high spots

but minimal filling out of the flat areas. The neuro we saw said

the only way we will get rounding is with a helmet and the ped

agreed. She's been casted and is getting her band next week.

LeAnn

[Guest guest]

:

....and was hoping that some of you could point me to some good links to learn more. <<<

There are lots of places to find good info. Start at the plagio group, and hit the BOOKMARKS section & FILES. Cranial Technologies has a lot of good info at their site (www.cranialtech.com ), and also check www.plagiocephaly.org and www.plagiocephaly.org/support

>>>Since he was born, he's preferred to sleep and look to his right side. Because of this his face on that side is flattened and his skull is abnormal in shape. He's extremely stubborn, andfusses if you try to move his head. <<<<

Sounds like torticollis. You need to seek out physio therapy. Also, be sure to join the torticolliskids Group. They are another super supportive group, with lots of info. to share.

>>>I've mentioned this to the doctor on several occasions and she offered no advice or suggestions. She claimed it was `positional molding' and would disappear when he was old enough to sit and walk. <<<

Unfortunately, you are not alone. So many physicians are still really ignorant to this condition. I'm sure you will hear from many about how similar your situation sounds to their own!!!

>>>I feel like they think I am some wacko parent, but this is really worrying me. Should I continue to push more and possibly alienate the doctor? <<<

Welcome to a group where you will find over 800 "wacko" parents!!!!!! There IS help for your son, and you will find all the support you need right here. To me, it is not acceptable for your doctor to be casting aside your concerns! I would start be finding a plagio-knowledgeable neurosurgeon in your area, then demand that you be referred to him/her. You can find a list of plagio-friendly physicians at http://www.plagiocephaly.org/ppcs-location.asp . Perhaps a new pediatrician is in order too.

Good luck to you, and please keep us posted.

Welcome to the group (of wackos!)

Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support...

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

From: beanocook58@...

Plagiocephaly

Sent: Thursday, May 24, 2001 3:28 PM

Subject: new to the group

I am so glad I found this site. I just started doing some research into this on my own and was hoping that some of you could point me to some good links to learn more. I am trying to sift through all of the posts as well, so I apologize if I ask something that has already been answered. My pediatrician has been extremely lax about my son's situation. Since he was born, he's preferred to sleep and look to his right side. Because of this his face on that side is flattened and his skull is abnormal in shape. He's extremely stubborn, andfusses if you try to move his head. I've mentioned this to the doctor on several occasions and she offered no advice or suggestions. She claimed it was `positional molding' and would disappear when he was old enough to sit and walk. Well, he's now 5 months old and it still hasn't gone away. Ialways offer toys to his other side, reposition his head when laying on his back, try to keep him sitting up as much as possible. We've tried rolling him on his side to sleep, but I go to bed every night, paranoid that he'll end up on his stomach and die of SIDS. Iwake up several times each night, shifting him back on his side, becausehe's stubborn and will find a way to get on his back. Some days I am exhausted from constantly trying to get him to look the other way and making sure he's sitting upright without getting bored.Finally, after much insistence on my part, my pediatrician sent me to an ophthalmologist. His eye exam came up OK, and next on the list was to get x-rays of the skull, but now it appears as if she's stalling. It's been 3 days since the eye exam and a lot of phone calls from me, and I haven't gotten the order yet to goget the x-rays. I feel like they think I am some wacko parent, but this is really worrying me. Should I continue to push more and possibly alienate the doctor? I just don't know. She'sthe kind of doctor who feels threatened if you question what she tells you. I just feel like they are taking things too slow,it's very frustrating. Sorry I had such a long post. Thank you.For more plagio info

[Guest guest]

,

We had a similar problem when we were trying to get 's x-rays.

My daughters pediatrian kept saying all along that my grandsons head

would just simply round out on its own. With some research, through this group, I went in to the Ped's office fully armed with information on Plagiocephaly. She was not happy at our questioning her intelligence!

To make a very long story short.....Push, push, push until you are satified with the results. That's what we did and was banded this past Tuesday with the Doc Band. It is YOUR baby, so go with the heart.

Cheryl....s Mom-Mom

[Guest guest]

,

First of all - welcome to the group and I'm glad you found us. Second of all

- keep pushing!!!! Your ped needs to help you and the stalling will not help.

You need the x-rays to rule out craniosynostosis (premature fusing of the

sutures in the head). Also, you need to ask about torticollis. If your baby

prefers to always look one way he may have torticollis. That is a tightening

in the neck muscles that limits a baby's range of motion and causes all sorts

of other complications along the way. If he has tort he will need to see a

physical therapist to resolve it. If helmet therapy will be necessary the

optimal time to start is now. Not to say that starting later would not be

effective, but you are at a very good point right now to begin.

Keep pushing away!! Only you know what is best for your baby - you are doing

the right thing and your ped needs to help you! Please let us know what you

decide to do - you will find all sorts of support here no matter what you

decide to do!

Marci (Mom to )

Oklahoma

[Guest guest]

Hey

Welcome to the group. You are not alone in your fight with your

Ped. A lot of people here have found themselves in similar

situations. Keep up the fight and do what you need to do to have

your child's head corrected. The sooner the band/helmet the better.

Don't let them push you off.

Good luck

Stasia

Mom to (7 months) STARband 3/01 - PA/DE

> I am so glad I found this site. I just started doing some

> research into this on my own and was hoping that some of you could

> point me to some good links to learn more. I am trying to sift

> through all of the posts as well, so I apologize if I ask something

> that has already been answered.

>

> My pediatrician has been extremely lax about my son's situation.

> Since he was born, he's preferred to sleep and look to his

> right side. Because of this his face on that side is flattened and

> his skull is abnormal in shape. He's extremely stubborn, and

> fusses if you try to move his head. I've mentioned this to

> the doctor on several occasions and she offered no advice or

> suggestions. She claimed it was `positional molding'

> and would disappear when he was old enough to sit and walk.

>

> Well, he's now 5 months old and it still hasn't gone away. I

> always offer toys to his other side, reposition his head when

laying

> on his back, try to keep him sitting up as much as possible.

> We've

> tried rolling him on his side to sleep, but I go to bed every

night,

> paranoid that he'll end up on his stomach and die of SIDS. I

> wake up

> several times each night, shifting him back on his side, because

> he's

> stubborn and will find a way to get on his back. Some days I am

> exhausted from constantly trying to get him to look the other way

and

> making sure he's sitting upright without getting bored.

>

> Finally, after much insistence on my part, my pediatrician sent me

to

> an ophthalmologist. His eye exam came up OK, and next on the list

> was to get x-rays of the skull, but now it appears as if she's

> stalling. It's been 3 days since the eye exam and a lot of

> phone calls from me, and I haven't gotten the order yet to go

> get the x-rays. I feel like they think I am some wacko parent, but

> this is really worrying me. Should I continue to push more and

> possibly alienate the doctor? I just don't know. She's

> the kind of doctor who feels threatened if you question what she

> tells you. I just feel like they are taking things too slow,

> it's

> very frustrating. Sorry I had such a long post. Thank you.

>

>

[Guest guest]

:

I know you have had responses from other parents, but I wanted to throw in

my two cents. I would continue to push for x-rays and a consultation with a

doctor who is familiar with plagio and torticollis (tort is causing the

preference to one side). Go around your pediatrician if you have to - make

sure you know your insurance coverage so you stay within their parameters,

but find doctor who will look at your son and address your concerns, not

just blow you off.

My ped did the same thing for one of my twins - I got all of the lines about

his misshapen head being " within cosmetic norms " , being " normal for a

preemie " , " no big deal once his hair comes in " etc. I was not satisfied.

If you check out the CAPPS website at www.cappskids.org there is a listing

of plagio knowledgeable doctors. Maybe there is one listed in your area -

if not, post where you are to see if another parent can recommend a doctor.

You should continue to pursue this until you are comfortable with the

answers. Your doctor works for you. My ped still thinks I was overreacting

to put in the DOC band, but it was my (and my husband's) decision -

we are the only advocates our children have. I will never regret getting

the DOC band.

Also, the tort needs to be addressed with physical therapy. Even if you get

a corrective device for the plagio, if you don't correct the tort, your son

can face life long challenges.

Best of luck,

hope you get some answers,

Sue Luck

mom to 4 including (DOC band graduate)

Cleveland, OH

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

From: <beanocook58@...>

<Plagiocephaly >

Sent: Thursday, May 24, 2001 6:28 PM

Subject: new to the group

> I am so glad I found this site. I just started doing some

> research into this on my own and was hoping that some of you could

> point me to some good links to learn more. I am trying to sift

> through all of the posts as well, so I apologize if I ask something

> that has already been answered.

>

> My pediatrician has been extremely lax about my son's situation.

> Since he was born, he's preferred to sleep and look to his

> right side. Because of this his face on that side is flattened and

> his skull is abnormal in shape. He's extremely stubborn, and

> fusses if you try to move his head. I've mentioned this to

> the doctor on several occasions and she offered no advice or

> suggestions. She claimed it was `positional molding'

> and would disappear when he was old enough to sit and walk.

>

> Well, he's now 5 months old and it still hasn't gone away. I

> always offer toys to his other side, reposition his head when laying

> on his back, try to keep him sitting up as much as possible.

> We've

> tried rolling him on his side to sleep, but I go to bed every night,

> paranoid that he'll end up on his stomach and die of SIDS. I

> wake up

> several times each night, shifting him back on his side, because

> he's

> stubborn and will find a way to get on his back. Some days I am

> exhausted from constantly trying to get him to look the other way and

> making sure he's sitting upright without getting bored.

>

> Finally, after much insistence on my part, my pediatrician sent me to

> an ophthalmologist. His eye exam came up OK, and next on the list

> was to get x-rays of the skull, but now it appears as if she's

> stalling. It's been 3 days since the eye exam and a lot of

> phone calls from me, and I haven't gotten the order yet to go

> get the x-rays. I feel like they think I am some wacko parent, but

> this is really worrying me. Should I continue to push more and

> possibly alienate the doctor? I just don't know. She's

> the kind of doctor who feels threatened if you question what she

> tells you. I just feel like they are taking things too slow,

> it's

> very frustrating. Sorry I had such a long post. Thank you.

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi and welcome to the group. I am glad you found us and I am sure you will be too. There is great support and friendship here. We have some other military moms as well and I am certain they will respond to you. They have had some luck with finding resources for plagio and can give you advice on the insurance battle I am sure. Click here: : Plagiocephaly Messages :Message 17689 of 18156 that is a link to some of the archived posts regarding military resources. I think it would be helpful to know what part of the country you are from. That may help us point you in the better direction for help.

Also PLEASE make sure you join Click here: : Torticolliskids

that will be a wonderful support for you as well. If those links do not come through email me and let me know and I will attache them differently for you.

You sound like a wonderful mommy who is doing great for her kids. I imagine it must be quite difficult facing so many medical complications at once-but you are doing great!! I am glad you found us-please ask many questions we are here to help and keep us up to date on what is going on. What type of helmet did your son get?? Beck Mom to DOC grad 5.29.01

Memphis, TN

[Guest guest]

Hi ,

Welcome to the group and thank you for sharing your story with us. Could you

tell us where you are from? We have a number of military families here and

perhaps there is one in your area who can help you with your insurance

question. Is it Tricare? I don't know about your location, but to be real

honest here in Oklahoma we were specifically told by our neursurgeon and

orthotist that Tricare doesn't cover the helmet in Oklahoma. You are doing

the right thing by going through the appeals process. Can you tell us what

they are denying you on? Are they saying cosmetic or not FDA approved? We

have a files section with a folder called " insurance help " - maybe you can

find some assistance there? My family went through three levels of appeals

including appearing before the board with no luck. Then we filed a complaint

with the State Department of Health and had an external review done by an

outside source - the external review board overturned the decision by our

insurance company and they are now paying the claim after 7 months of

fighting them!

It's good to hear that you are seeing some progress with your son's helmet

therapy. Hopefully one of our military families will be able to help you more

specifically with your insurance issue. Please keep us posted on what you

find out.

I'm glad you found this group. They have been a tremendous source of support,

answers and friendship to me!

Marci (Mom to )

Oklahoma

[Guest guest]

Sheryl,

Welcome to the group - I'm glad you found us! I agree with you - this group

really is exceptional.

It sounds like you already have the ball rolling and are seeing good

improvement. Wow - good deal on Austin being so helpful and scheduling his

growth spurts around getting his band!! LOL It is always good to hear the

success stories.

As far as your denial goes, I'm not surprised. These insurance companies are

reluctant to pay for this treatment, but I think that trend is starting to

change. I would encourage you to really stick with it and not give up!! Could

you tell us what the denial is based on? (ie cosmetic, experimental, etc) Not

everyone is denied for the same reason and we might be able to offer some

assistance if you could be specific. One way or another - we have a files

section and there is a folder called Insurance Help that might have some info

that you would find helpful. We fought the insurance company and won, but it

took us 7 months! In our case persistence paid off.

Good luck and welcome to the group. I hope you will stick with us!!

Marci (Mom to )

Oklahoma

[Guest guest]

The letter that I received stated it was cosmetic. Today I received

the EOB from Cigna and it states in remarks section - No

authorization for non-contracted provider.

Thanks for the welcome and thanks for any help you can offer.

sheryl

> Sheryl,

>

> Welcome to the group - I'm glad you found us! I agree with you -

this group

> really is exceptional.

>

> It sounds like you already have the ball rolling and are seeing

good

> improvement. Wow - good deal on Austin being so helpful and

scheduling his

> growth spurts around getting his band!! LOL It is always good to

hear the

> success stories.

>

> As far as your denial goes, I'm not surprised. These insurance

companies are

> reluctant to pay for this treatment, but I think that trend is

starting to

> change. I would encourage you to really stick with it and not give

up!! Could

> you tell us what the denial is based on? (ie cosmetic,

experimental, etc) Not

> everyone is denied for the same reason and we might be able to

offer some

> assistance if you could be specific. One way or another - we have a

files

> section and there is a folder called Insurance Help that might have

some info

> that you would find helpful. We fought the insurance company and

won, but it

> took us 7 months! In our case persistence paid off.

>

> Good luck and welcome to the group. I hope you will stick with us!!

>

> Marci (Mom to )

> Oklahoma

[Guest guest]

Sheryl,

Being denied for cosmetic reasons is the most common denial we get.

If you haven't already I would suggest trying to get a letter of

medical necessity from your specialist. If possible try to get a

letter of medical necessity from your ped as well. The more letters

of medical necessity that you can get from doctors the harder it will

be for your insurance company to say it is cosmetic. In the bookmarks

section you will find some articles that have been written by people

in the medical profession relating plagio to other medical

conditions. I would print some of those articles and reference them

in your appeals letter. If they are saying that your provider is non-

contracted then check around and see who they do have contracted to

provide orthotic devices. Chances are that whoever they have

contracted to provide orthotic devices does not make any kind of band

for babies with plagio. If this is the case then they should be able

to condsider CT a " contracted " provider in your situation. CT should

be able to assist you with this issue.

OK, I better stop now. I work for a company that adminsters life and

health insurance policies so I can really tend to run on and on about

the subject - sorry!!! :-) I'm sure you're already doing this, but

document, document, document!!!!

Good luck Sheryl and if I can be of further assitance please let me

know!

Marci (Mom to )

Oklahoma

> > Sheryl,

> >

> > Welcome to the group - I'm glad you found us! I agree with you -

> this group

> > really is exceptional.

> >

> > It sounds like you already have the ball rolling and are seeing

> good

> > improvement. Wow - good deal on Austin being so helpful and

> scheduling his

> > growth spurts around getting his band!! LOL It is always good to

> hear the

> > success stories.

> >

> > As far as your denial goes, I'm not surprised. These insurance

> companies are

> > reluctant to pay for this treatment, but I think that trend is

> starting to

> > change. I would encourage you to really stick with it and not

give

> up!! Could

> > you tell us what the denial is based on? (ie cosmetic,

> experimental, etc) Not

> > everyone is denied for the same reason and we might be able to

> offer some

> > assistance if you could be specific. One way or another - we have

a

> files

> > section and there is a folder called Insurance Help that might

have

> some info

> > that you would find helpful. We fought the insurance company and

> won, but it

> > took us 7 months! In our case persistence paid off.

> >

> > Good luck and welcome to the group. I hope you will stick with

us!!

> >

> > Marci (Mom to )

> > Oklahoma

[Guest guest]

HI Sheryl-welcome to the group. We are so glad that you found us. You will find a lot of support information and friendship here. Please ask as many questions as you would like-as someone here certainly has experienced it. Insurance is tough most mommies here have had to battle over and over. Make sure you document everything and appeal appeal appeal as much as you can. I could go into a long explanation but I will give you some links that might help and then if you have some questions just ask from there.

We hope you will keep us informed of your progress with the insurance and of course how little Austin is doing. You sound like a great mommy who is doing awonderful job so keep up the great work. Here are the links...........

Click here: Insurance Issues

Click here: Cranial Molding Helmets - The American Academy of Orthotists and Prosthetists Online

Click here: Plagiocephaly Information Center - Cranial Technologies, Inc.

Click here: State Insurance Departments

Click here: : Plagiocephaly Files

please let me know if you have any difficulties.

Beck mom to '

Memphis, TN

Co. moderator

[Guest guest]

Hi Sheryl,

we have United and we got denied because Doc was out of network.

Because the prescription was for Doc I asked which Doc provider do I

go to. They dident answer and paid the Bill 100%.

Lorraine.

> > Sheryl,

> >

> > Welcome to the group - I'm glad you found us! I agree with you -

> this group

> > really is exceptional.

> >

> > It sounds like you already have the ball rolling and are seeing

> good

> > improvement. Wow - good deal on Austin being so helpful and

> scheduling his

> > growth spurts around getting his band!! LOL It is always good to

> hear the

> > success stories.

> >

> > As far as your denial goes, I'm not surprised. These insurance

> companies are

> > reluctant to pay for this treatment, but I think that trend is

> starting to

> > change. I would encourage you to really stick with it and not

give

> up!! Could

> > you tell us what the denial is based on? (ie cosmetic,

> experimental, etc) Not

> > everyone is denied for the same reason and we might be able to

> offer some

> > assistance if you could be specific. One way or another - we have

a

> files

> > section and there is a folder called Insurance Help that might

have

> some info

> > that you would find helpful. We fought the insurance company and

> won, but it

> > took us 7 months! In our case persistence paid off.

> >

> > Good luck and welcome to the group. I hope you will stick with

us!!

> >

> > Marci (Mom to )

> > Oklahoma

[Guest guest]

Sheryl,

Welcome to the group. I also live in the Dallas area and my son

wore the DOC Band for 3.5 months. The people at Cranial Tech

are wonderful. I am glad to hear that Austin is doing well with his

band. As for insurance, check out the insurance folder under the

files section. I can't be of much help in that area...we got ours

covered. Best of luck and good wishes for a nice round head!

& DOC Grad

> We are new to this group! I have been reading messages for several

> days and I think it is amazing the information and support that

goes

> around! Glad to have found this!

> My son, Austin is almost 9 months old. We were advised at his 6 mo.

> check up to try repositioning as his head was slightly flat on the

> left side, by 7 mos. I realized this was not working and we were

> referred to Childrens Medical Center Dallas for xrays then to the

> Childrens Craniofacial Center for diagnosis of plagio. They sent us

> on to Cranial Tech. (8 mos.) Austin is now been casted in his band

> for almost two weeks, I notice some improvement already. They said

he

> was growing fast right now. I am looking forward to our appt

tomorrow

> to see what progress is coming along.

> We have Cigna POS, and have been denied, I am trying to finish an

> appeal letter, if anyone has any suggestions, please send them.

>

> Sheryl