good & bad exp. stories in KY needed!!!

[Guest guest]

Hi Janet,

I believe I had emailed you some of our info, but thought I'd just chime in

again. I just placed photos in a folder named " J " . There is one pic with

the helmet on, a before picture, and a picture showing the progress in our

COPC helmet.

The only real problems we've had with the helmet is skin irritation, as

has very sensitive skin and the protruding side of her forehead has caused

many issues. Every time we've had an issue though, we've had very good

service from the people in New Albany. They have answered my questions,

explained why things were happening and if need be have scheduled us in

very quickly to have adjustments made.

It has been frustrating, but I don't know that it would have been any different

with any other type of helmet or band. My mommy instincts had to be used

many times to decide when we would keep the helmet off for healing, and

when we would put it back on. If you have a look at the pics that I uploaded

though, I'm sure you'll agree that it has been quite worth it.

Like I said before, I wasn't real happy with the neuro surgeon that referred us

as he's already released us even though the treatment is not done.

I know there have been a few people with bad experiences with COPC in

New Albany, but I also know he treats over 200 children a year and we've

only heard a few bad stories. I wish that they would follow the treatment like

most other places, but they hold that responsiblity to the referring dr.

There were many times during this treatment that I felt like throwing the helmet

away, but we just kept using our better judgement, and I believe it has paid

off.

I'm sure there are other options if you're willing to travel, the hard part is

finding someone to give you an Rx.

Good luck,

and (COPC helmet 12/10/03)

--- In Plagiocephaly , " Janet " <syllicat@b...>

wrote:

> Ok peeps.... trying to arm myself with all kinds of info here. I am seeking

> both GOOD and BAD experiences that people have had (or if you know

someone

> that has had) with Hanger Orthotics (In KY and IN area) and with COPC in

> Indiana. I tried emailing folks that were listed in the database but only

> received one response which was negative. I imagine there are good and

bad

> to both.

>

> AND, insurance wise, we have UHC--anyone have a positive experience or

> something so bad that I can learn from your experience.

>

> The more my husband and I talk about our experience yesterday, the

crazier I

> am getting!!! This guy seemed to have no interest in my child's needs....

> My son had to have surgery in Nov. and the surgeon who did that surgery

was

> WONDERFUL. He sat with us and explained the surgery, drew pictures and

> talked over everything with us. We were putty in his hands and felt very

> comfy with him. This guy we saw yesterday, what an OPPOSITE

experience.

> There has to be another avenue we can go!!!

>

> This is so frustrating..... But it is good to share with everyone here and

> help each other. My question is why are we being sent to a plastic

surgeon?

> The insurance company denies the claim saying that it is a cosmetic

> procedure? I just don't get it. I wish Peds. were trained in assessing

> plagio.....

>

> Errrrrrr.....

>

> All help is appreciated!! Feel free to privately email me as well...

> Thanks,

>

> Janet

> syllicat@b...

[Guest guest]

Hi and fellow Parents of Plagiocephaly Inflicted Children

(PPIC),

This is Janet's husband (a.k.a. Tavin's Dad)

Thank you very much for telling us about your positive result. We

need to hear both good and bad prior to making any decision as

important as this.

After my conversation with UHC, they informed me that we can use

whoever is in our network of providers. Both COPC and Hangers are

in network and they are both FDA approved. They also told me that

the helmet is 100% covered and any repairs and replacements are

covered as well.

The problem that I have is the doctor outright refusing to let us

use anyone else but COPC. I want to have an informed choice and

reasons for and against different helmets/providers. Since he

offered zilch in this department, it is good to hear of other's

experience even if it is just someone else that you know of.

From what I understand, COPC uses their own passive helmet and

Hangers uses Starband, which I believe is an active helmet. So, any

stories about these types would be beneficial to us. The doctor

said the COPC helmet would be worn 4-5 month, but I believe the

Starband would only need to worn about half that time.

Thank you all for taking the time to help us by posting your

experiences and support. It is greatly appreciated.

-Elliott

> > Ok peeps.... trying to arm myself with all kinds of info here.

I am seeking

> > both GOOD and BAD experiences that people have had (or if you

know

> someone

> > that has had) with Hanger Orthotics (In KY and IN area) and with

COPC in

> > Indiana. I tried emailing folks that were listed in the

database but only

> > received one response which was negative. I imagine there are

good and

> bad

> > to both.

> >

> > AND, insurance wise, we have UHC--anyone have a positive

experience or

> > something so bad that I can learn from your experience.

> >

> > The more my husband and I talk about our experience yesterday,

the

> crazier I

> > am getting!!! This guy seemed to have no interest in my child's

needs....

> > My son had to have surgery in Nov. and the surgeon who did that

surgery

> was

> > WONDERFUL. He sat with us and explained the surgery, drew

pictures and

> > talked over everything with us. We were putty in his hands and

felt very

> > comfy with him. This guy we saw yesterday, what an OPPOSITE

> experience.

> > There has to be another avenue we can go!!!

> >

> > This is so frustrating..... But it is good to share with

everyone here and

> > help each other. My question is why are we being sent to a

plastic

> surgeon?

> > The insurance company denies the claim saying that it is a

cosmetic

> > procedure? I just don't get it. I wish Peds. were trained in

assessing

> > plagio.....

> >

> > Errrrrrr.....

> >

> > All help is appreciated!! Feel free to privately email me as

well...

> > Thanks,

> >

> > Janet

> > syllicat@b...

[Guest guest]

-Hi I replied earlier. We are in missouri but Jenna wore a

STARband. She was banded at 9 months. They estimated she would be

in it 5 to 6 months. After 12 weeks she graduated with

approximately 80% correction. She has rounded more post grad.

Jenna's ortho had over 20 years experience with head remolding

devices. We had a wonderful experience. I am not familiar with the

COPC helmet.

The amount of time banded depends on several things such as age of

child, type of band, severity of plagio, and the childs growth rate.

I agree with you. You should be able to visit both places and

interview them. Then make a choice with who you feel is the most

qualified. I hope someone in your area can help you. Please kepp

us posted. Can the insurance recommend any other doctor to visit

who might give you the choice of what location to use? Just a

thought.

Good luck,

Angie and Jenna(STAR band grad 1/21/03)-- In

Plagiocephaly , " tavinsdad " <tavinsdad@y...> wrote:

> Hi and fellow Parents of Plagiocephaly Inflicted Children

> (PPIC),

>

> This is Janet's husband (a.k.a. Tavin's Dad)

>

> Thank you very much for telling us about your positive result. We

> need to hear both good and bad prior to making any decision as

> important as this.

>

> After my conversation with UHC, they informed me that we can use

> whoever is in our network of providers. Both COPC and Hangers are

> in network and they are both FDA approved. They also told me that

> the helmet is 100% covered and any repairs and replacements are

> covered as well.

>

> The problem that I have is the doctor outright refusing to let us

> use anyone else but COPC. I want to have an informed choice and

> reasons for and against different helmets/providers. Since he

> offered zilch in this department, it is good to hear of other's

> experience even if it is just someone else that you know of.

>

> From what I understand, COPC uses their own passive helmet and

> Hangers uses Starband, which I believe is an active helmet. So,

any

> stories about these types would be beneficial to us. The doctor

> said the COPC helmet would be worn 4-5 month, but I believe the

> Starband would only need to worn about half that time.

>

> Thank you all for taking the time to help us by posting your

> experiences and support. It is greatly appreciated.

>

> -Elliott

>

>

> > > Ok peeps.... trying to arm myself with all kinds of info

here.

> I am seeking

> > > both GOOD and BAD experiences that people have had (or if you

> know

> > someone

> > > that has had) with Hanger Orthotics (In KY and IN area) and

with

> COPC in

> > > Indiana. I tried emailing folks that were listed in the

> database but only

> > > received one response which was negative. I imagine there are

> good and

> > bad

> > > to both.

> > >

> > > AND, insurance wise, we have UHC--anyone have a positive

> experience or

> > > something so bad that I can learn from your experience.

> > >

> > > The more my husband and I talk about our experience yesterday,

> the

> > crazier I

> > > am getting!!! This guy seemed to have no interest in my

child's

> needs....

> > > My son had to have surgery in Nov. and the surgeon who did

that

> surgery

> > was

> > > WONDERFUL. He sat with us and explained the surgery, drew

> pictures and

> > > talked over everything with us. We were putty in his hands

and

> felt very

> > > comfy with him. This guy we saw yesterday, what an OPPOSITE

> > experience.

> > > There has to be another avenue we can go!!!

> > >

> > > This is so frustrating..... But it is good to share with

> everyone here and

> > > help each other. My question is why are we being sent to a

> plastic

> > surgeon?

> > > The insurance company denies the claim saying that it is a

> cosmetic

> > > procedure? I just don't get it. I wish Peds. were trained in

> assessing

> > > plagio.....

> > >

> > > Errrrrrr.....

> > >

> > > All help is appreciated!! Feel free to privately email me as

> well...

> > > Thanks,

> > >

> > > Janet

> > > syllicat@b...

[Guest guest]

Janet, I'm not in your area but wanted to applaud you for wanting to

get all the info you can. Your doing a great job and I wish you

luck. Oh, my daughter was referred to a Craniofacial Surgeon and

there he had a team of Dr's and one of them was a Neurosurgeon who

actually diagnosed 's Scaphy.

Dustie

> Ok peeps.... trying to arm myself with all kinds of info here. I

am seeking

> both GOOD and BAD experiences that people have had (or if you know

someone

> that has had) with Hanger Orthotics (In KY and IN area) and with

COPC in

> Indiana. I tried emailing folks that were listed in the database

but only

> received one response which was negative. I imagine there are

good and bad

> to both.

>

> AND, insurance wise, we have UHC--anyone have a positive

experience or

> something so bad that I can learn from your experience.

>

> The more my husband and I talk about our experience yesterday, the

crazier I

> am getting!!! This guy seemed to have no interest in my child's

needs....

> My son had to have surgery in Nov. and the surgeon who did that

surgery was

> WONDERFUL. He sat with us and explained the surgery, drew

pictures and

> talked over everything with us. We were putty in his hands and

felt very

> comfy with him. This guy we saw yesterday, what an OPPOSITE

experience.

> There has to be another avenue we can go!!!

>

> This is so frustrating..... But it is good to share with everyone

here and

> help each other. My question is why are we being sent to a

plastic surgeon?

> The insurance company denies the claim saying that it is a cosmetic

> procedure? I just don't get it. I wish Peds. were trained in

assessing

> plagio.....

>

> Errrrrrr.....

>

> All help is appreciated!! Feel free to privately email me as

well...

> Thanks,

>

> Janet

> syllicat@b...

[Guest guest]

Hi Elliot,

When I was getting the Helmet/Band Database started last fall, I

remember emailing a parent who had used a Hanger Cranial Band.

Hanger offers their own band, the Hanger Cranial Band, as well as

the Starband, at some locations. They are both " active " bands that

are FDA approved, and are similar in appearance. Anyway, I went back

through my notes, and also confirmed in the Helmet/Band Database,

that we have one parent who is willing to be contacted offlist about

her experience with the Hanger Cranial Band. She went to Hanger in

N.Y., I think, but it might be worth it to contact her with some

general questions about that band design. Her name is Janina, and

her email is: jtassone@...

I hope that you hear back from the other parents who have used

COPC. I will go through the posting archives to see if I can find

some posts from them.

That is excellent news about your insurance - I'm am so pleased to

hear that the helmet is covered!

Take care,

Christie (Mom to Repo'd Remy)

> > > Ok peeps.... trying to arm myself with all kinds of info

here.

> I am seeking

> > > both GOOD and BAD experiences that people have had (or if you

> know

> > someone

> > > that has had) with Hanger Orthotics (In KY and IN area) and

with

> COPC in

> > > Indiana. I tried emailing folks that were listed in the

> database but only

> > > received one response which was negative. I imagine there are

> good and

> > bad

> > > to both.

> > >

> > > AND, insurance wise, we have UHC--anyone have a positive

> experience or

> > > something so bad that I can learn from your experience.

> > >

> > > The more my husband and I talk about our experience yesterday,

> the

> > crazier I

> > > am getting!!! This guy seemed to have no interest in my

child's

> needs....

> > > My son had to have surgery in Nov. and the surgeon who did

that

> surgery

> > was

> > > WONDERFUL. He sat with us and explained the surgery, drew

> pictures and

> > > talked over everything with us. We were putty in his hands

and

> felt very

> > > comfy with him. This guy we saw yesterday, what an OPPOSITE

> > experience.

> > > There has to be another avenue we can go!!!

> > >

> > > This is so frustrating..... But it is good to share with

> everyone here and

> > > help each other. My question is why are we being sent to a

> plastic

> > surgeon?

> > > The insurance company denies the claim saying that it is a

> cosmetic

> > > procedure? I just don't get it. I wish Peds. were trained in

> assessing

> > > plagio.....

> > >

> > > Errrrrrr.....

> > >

> > > All help is appreciated!! Feel free to privately email me as

> well...

> > > Thanks,

> > >

> > > Janet

> > > syllicat@b...

[Guest guest]

Elliot,

We had a new member post a couple of weeks ago that is in the COPC

band. She only posted once, the day after her daughter got the

helmet, becuase her baby was having trouble sleeping in the helmet.

Even though it has only been a few weeks, maybe this mom can give

you her insight and impressions into her experience at COPC. I

don't know if she follows daily posts (I hope she replies to your

post), but you could also consider emailing her. Her name and email

is:

btmiller99@... (Tina w/daughter Tori) got New Albany

helmet around 2/17 and posted the day after about her daughter

having trouble sleeping in the helmet.

Good luck with your information-gathering; if I can find anything

else, I'll post or email.

Christie (Mom to Repo'd Remy)

> > > Ok peeps.... trying to arm myself with all kinds of info

here.

> I am seeking

> > > both GOOD and BAD experiences that people have had (or if you

> know

> > someone

> > > that has had) with Hanger Orthotics (In KY and IN area) and

with

> COPC in

> > > Indiana. I tried emailing folks that were listed in the

> database but only

> > > received one response which was negative. I imagine there are

> good and

> > bad

> > > to both.

> > >

> > > AND, insurance wise, we have UHC--anyone have a positive

> experience or

> > > something so bad that I can learn from your experience.

> > >

> > > The more my husband and I talk about our experience yesterday,

> the

> > crazier I

> > > am getting!!! This guy seemed to have no interest in my

child's

> needs....

> > > My son had to have surgery in Nov. and the surgeon who did

that

> surgery

> > was

> > > WONDERFUL. He sat with us and explained the surgery, drew

> pictures and

> > > talked over everything with us. We were putty in his hands

and

> felt very

> > > comfy with him. This guy we saw yesterday, what an OPPOSITE

> > experience.

> > > There has to be another avenue we can go!!!

> > >

> > > This is so frustrating..... But it is good to share with

> everyone here and

> > > help each other. My question is why are we being sent to a

> plastic

> > surgeon?

> > > The insurance company denies the claim saying that it is a

> cosmetic

> > > procedure? I just don't get it. I wish Peds. were trained in

> assessing

> > > plagio.....

> > >

> > > Errrrrrr.....

> > >

> > > All help is appreciated!! Feel free to privately email me as

> well...

> > > Thanks,

> > >

> > > Janet

> > > syllicat@b...

[Guest guest]

Hi Elliot,

I have been scrolling through the archives looking for posts from

the other parents you may not have heard from -- the post archives

search takes forever, but before I gave up, I came across a post

from (son ) about COPC, and a reply post that made

mention of Dr. Chariker (who I think your wife said you went to). I

hope this info helps!!

Take care,

Christie (Mom to Repo'd Remy) The posts I found follow

>>>>>>>From: " girlibrarian " <girlibrarian@...>

Date: Thu Dec 18, 2003 4:49 pm

Subject: New Albany Ortho - Center for Orthotic and Prosthetic Care

Since there's a lot of traffic about the local helmet for the

Louisville KY area made by Bob Havens of the COPC, I thought I'd

chime in with our experience. I rarely post so probably nobody

remembers us.

We finally got a referral for a helmet and got his helmet at

9 months old. At that time, travel to CT and the cost of a DOCband

was completely out of the question for us, so this was as far as we

knew our only option.

Three things made me nervous when we took for his consult:

1) No file of before/after pictures of babies treated to show us

what to expect.

2) The sample helmets he had around were all clearly for a smaller

baby who is likely to get better results from a passive helmet.

3) No casting. He made the helmet from measurements and Polaroids.

We pressed ahead, because he was very kind and indicated that he

would do everything possible to help us.

Well, for one thing, he (and the neurologist who referred us to

him), NEVER sent the supporting paperwork to Anthem, so we had no

chance of them paying for it. We went through two rounds of appeals

before I discovered it.

He didn't return our calls about ' ill-fitting helmet. The

helmet seemed tight and lopsided. He said when we went to pick it up

that it would seem to fit wrong at first because it was made to the

shape we wanted ' head to be, and gradually it would fit

better. was already able to pop it off in his office, so he

gave us a chin strap.

was supposed to wear the helmet for 4 months. This is not the

kind of helmet designed to be adjusted, so if it was already seeming

too small we were dubious about it.

We tried to ease into helmet wearing. We tried to force him

into it. We tried to distract him. After two weeks of my son

miserable and literally screaming whenever the helmet was put on,

for as long as it was put on (honestly, we let him go for 3 three

whole hours crying at one point) and two weeks of unanswered phone

calls, we just decided to give up and pray pray pray for the best.

If I had to do it all over again... you can probably guess.

My $0.02 and experience, for anyone who wants it.

mom to in IN (25 months old, local helmet dropout, remaining

mild-moderate brachy/plagio)

From: " Lumetta " <Lumetta@...>

Date: Fri Dec 19, 2003 11:19 am

Subject: Re: New Albany - //

Well... what do ya know? We saw Dr. Moriarty also! We saw Dr.

Moriarty after Dr. Chariker (the plastic surgeon that saw also)

incorrectly told us that Lorenzo had cranio. When Dr.Moriarty told

us that he didn't have cranio, we went to another plastic surgeon in

the same office as Dr. Chariker - Dr. O'. He told us the same

thing as Dr.Chariker... no such thing as a helmet for scaphy.

From what I've heard, Dr. Moriarty is an excellent surgeon and does a

great job with cranio babies... but leaves a little to be desired

with plagio babies.

God Bless,

in KY

Wife to Bert

Mama to Isabelle (6), Carolina (4), (3) and Lorenzo (1) -

Doc grad.

> > > Ok peeps.... trying to arm myself with all kinds of info

here.

> I am seeking

> > > both GOOD and BAD experiences that people have had (or if you

> know

> > someone

> > > that has had) with Hanger Orthotics (In KY and IN area) and

with

> COPC in

> > > Indiana. I tried emailing folks that were listed in the

> database but only

> > > received one response which was negative. I imagine there are

> good and

> > bad

> > > to both.

> > >

> > > AND, insurance wise, we have UHC--anyone have a positive

> experience or

> > > something so bad that I can learn from your experience.

> > >

> > > The more my husband and I talk about our experience yesterday,

> the

> > crazier I

> > > am getting!!! This guy seemed to have no interest in my

child's

> needs....

> > > My son had to have surgery in Nov. and the surgeon who did

that

> surgery

> > was

> > > WONDERFUL. He sat with us and explained the surgery, drew

> pictures and

> > > talked over everything with us. We were putty in his hands

and

> felt very

> > > comfy with him. This guy we saw yesterday, what an OPPOSITE

> > experience.

> > > There has to be another avenue we can go!!!

> > >

> > > This is so frustrating..... But it is good to share with

> everyone here and

> > > help each other. My question is why are we being sent to a

> plastic

> > surgeon?

> > > The insurance company denies the claim saying that it is a

> cosmetic

> > > procedure? I just don't get it. I wish Peds. were trained in

> assessing

> > > plagio.....

> > >

> > > Errrrrrr.....

> > >

> > > All help is appreciated!! Feel free to privately email me as

> well...

> > > Thanks,

> > >

> > > Janet

> > > syllicat@b...

[Guest guest]

Ok peeps.... trying to arm myself with all kinds of info here. I am seeking

both GOOD and BAD experiences that people have had (or if you know someone

that has had) with Hanger Orthotics (In KY and IN area) and with COPC in

Indiana. I tried emailing folks that were listed in the database but only

received one response which was negative. I imagine there are good and bad

to both.

AND, insurance wise, we have UHC--anyone have a positive experience or

something so bad that I can learn from your experience.

The more my husband and I talk about our experience yesterday, the crazier I

am getting!!! This guy seemed to have no interest in my child's needs....

My son had to have surgery in Nov. and the surgeon who did that surgery was

WONDERFUL. He sat with us and explained the surgery, drew pictures and

talked over everything with us. We were putty in his hands and felt very

comfy with him. This guy we saw yesterday, what an OPPOSITE experience.

There has to be another avenue we can go!!!

This is so frustrating..... But it is good to share with everyone here and

help each other. My question is why are we being sent to a plastic surgeon?

The insurance company denies the claim saying that it is a cosmetic

procedure? I just don't get it. I wish Peds. were trained in assessing

plagio.....

Errrrrrr.....

All help is appreciated!! Feel free to privately email me as well...

Thanks,

Janet

syllicat@...

[Guest guest]

Hi Christie,

Thank you so much for the effort you have put in to helping us. It

has been beneficial to us making a decision.

We are waiting to consult with our pediatrician about our options,

and will update the board with which path we followed and why.

-Elliott

> > > > Ok peeps.... trying to arm myself with all kinds of info

> here.

> > I am seeking

> > > > both GOOD and BAD experiences that people have had (or if

you

> > know

> > > someone

> > > > that has had) with Hanger Orthotics (In KY and IN area) and

> with

> > COPC in

> > > > Indiana. I tried emailing folks that were listed in the

> > database but only

> > > > received one response which was negative. I imagine there

are

> > good and

> > > bad

> > > > to both.

> > > >

> > > > AND, insurance wise, we have UHC--anyone have a positive

> > experience or

> > > > something so bad that I can learn from your experience.

> > > >

> > > > The more my husband and I talk about our experience

yesterday,

> > the

> > > crazier I

> > > > am getting!!! This guy seemed to have no interest in my

> child's

> > needs....

> > > > My son had to have surgery in Nov. and the surgeon who did

> that

> > surgery

> > > was

> > > > WONDERFUL. He sat with us and explained the surgery, drew

> > pictures and

> > > > talked over everything with us. We were putty in his hands

> and

> > felt very

> > > > comfy with him. This guy we saw yesterday, what an OPPOSITE

> > > experience.

> > > > There has to be another avenue we can go!!!

> > > >

> > > > This is so frustrating..... But it is good to share with

> > everyone here and

> > > > help each other. My question is why are we being sent to a

> > plastic

> > > surgeon?

> > > > The insurance company denies the claim saying that it is a

> > cosmetic

> > > > procedure? I just don't get it. I wish Peds. were trained

in

> > assessing

> > > > plagio.....

> > > >

> > > > Errrrrrr.....

> > > >

> > > > All help is appreciated!! Feel free to privately email me

as

> > well...

> > > > Thanks,

> > > >

> > > > Janet

> > > > syllicat@b...