Re: I've given up!!!!!!!!!!!!!

[Guest guest]

Pamela,

I am so, so very sorry that you are having all of these issues!!!

We didn't use a helmet for our daughter Remy (only repo), so I don't

have any advice to offer you about helmet fit or anything like that,

but I have been compiling data about local helmets, and have

received 2 emails from 2 members who have used Hanger in White

Plains and in Woburn, MA. Both members said they would be happy to

share their experiences with anyone who needs help or has

questions. If you want to contact either of them, they are:

Janina at jtassone@... who went to Woburn, MA

Kerry at kstellaus@... who went to White Plains, working with

Brown.

Again, I'm terribly sorry about what Luke and you are going

through!

Take care,

Christie (Mom to Remy)

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is

currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time

they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so

how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

Pamela, I'm really sorry to hear this! I wish you wouldn't give up

so soon. It sounds as if your ortho doesn't have much experience if

any when dealing with banding. First, nobody should add anything to

the band to make it fit properly. Moleskin or something for skin

irritation. UGH!! This just urks me to the bone. I wish you luck

and rounding without banding. Please keep us updated on what the

follow-up visit brings.

Dustie

--- In Plagiocephaly , " pfrunner2003 " <PFrunner@a...>

wrote:

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

Pamela,

I have emailed you off the board. I just wanted to add that your son

is still at a great age to receive awesome correction from banding. .

It really sounds like your orthos weren't experienced in treating

plagio babies. Are there any other places near you that you can use?

--- In Plagiocephaly , " pfrunner2003 " <PFrunner@a...>

wrote:

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

Hi Pamela,

This sounds just terrible. I'm so sorry to hear about your very bad experience.

Your

baby is still pretty young and would benefit from banding. It just sounds like

you had

a run in with a not-so-good orthotist (and that's the nice way of saying it!).

There are

other options in your area for banding. If I'm not mistaken there is a CT clinic

in the

general area and also I believe the maker of the NICband is in your general

area. Are

you giving it up for good or are you thinking of pursuing other alternatives? I

can

really, really understand your frustration.

Marci (Mom to )

Oklahoma

> My son received his band on Sept 19th. We went to Hanger in NYC. I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on it.

> When he saw me coming to put it on he would scream. He is currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

I am sorry that things did not work out. The decision is definitely

your family's to make. Have you considered getting a second

opinion? At 7 1/2 months luke can get awesome correction. Jenna

was banded at 9 months and received approx. 80% at the time of

graduation.

I do want to add the Jenna has received more correction since

graduating in january. Some of her correction has occurred in the

last month. I don't know if this correction was encouraged by her

wearing the band that redirected growth in the needed areas or if

this particular correction would have occurred anyway. Maybe someone

can help me out with that.

Best wishes in whatever direction you decide to go.

Angie and Jenna

--- In Plagiocephaly , " pfrunner2003 " <PFrunner@a...>

wrote:

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is

currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time

they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so

how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

Pamela,

I'm so sorry that you and Luke have had to go through such a

horrible experience! I'm very glad though that you are giving up on

that band/orthotist. I would strongly encourage you not to give up

on banding alltogether though. A band is only as good as the

orthotist! If your son has a headshape you are not happy with, it

will bother you and you don't want to regret it! Please look at my

Hannah's progress pictures in the photo section. These bands can

work miracles if in the right hands. Do you have a Cranial Tech or

other options in your area? Maybe someone from your area will chime

in with their experience. We drive 3 hours each way to Cranial

Tech, and though it isn't fun, I don't regret the decision one bit.

Good luck.

, mom to Hannah, DOCbanded 5/12 and 8/12

Cape Cod, Ma

--- In Plagiocephaly , " pfrunner2003 " <PFrunner@a...>

wrote:

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is

currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time

they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so

how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom

[Guest guest]

oh - I am so sorry to hear that. I used Hanger in NYC for my

daughter in 2001 and while Bobby the guy we worked with was very

nice, I was not happy with the band or the correction she got. Later

in her treatment they had to make her a new band to follow FDA

guidlines and I experienced some similar things like you. The band

was huge and just awful. She completely screamed with it on. Since

she was close to the end, we just never used it and never went back.

She does not have a perfect head but its ok and better than it was.

My son was banded in July and I went to Cranial Tech. The difference

in my experience was amazing. Not only are they nice and know what

they are doing, they explained everything to me and seemed to double

check everything. has a fabulous head and I am so sorry

that I did not go there with my daughter.

If you are up to it, try somewhere else??? However, I do have to note

that 2 of my friends used Hanger at the same time I did and got great

correction. They never had to get the second huge band though.

Caroline

[Guest guest]

I am so sorry to hear about all the problems with the band. I hope

you all can get things back to normal soon. What ever you do, don't

feel quilty about what ever you decide. I have heard of lots of

cases where the head shape becomes normal over time without being

banded. Have you gone to the CAPPS website? Cappskids.org.

They have a message board all about reshaping without the band.

Hope this helps.

Wanda

Mom to Haley

--- In Plagiocephaly , " pfrunner2003 " <PFrunner@a...>

wrote:

> My son received his band on Sept 19th. We went to Hanger in NYC.

I

> had several orthodists working with my son. They could never get

> the band to fit him properly. The sideburn piece would completely

> cover one eye. The helmet would turn. He constantly pulled on

it.

> When he saw me coming to put it on he would scream. He is

currently

> 7 1/2 months old. He usually sleeps 11-12 solid hours at night.

> With the band he was up every hour. After 3 adjustments per week

> for the first two weeks, they made a new band. The first time

they

> used a plaster mold, the second time they used a computer imaging

> system. We got the second band. It still turned and pinched his

> ears. They put a wedge inside to prevent it from slipping. It

> worked!! To my horror when I removed the helmet after my son woke

> up, he had a blood red mark on his forehead where the wedge was

put

> in. It turned into a horrible bruise. I went back one last time

> for an adjustment yesterday. It still wasn't right. My husband

and

> I decided enough is enough. My son was miserable. He would cry

> when he saw the helmet, and he would cry as soon as he saw the

> building where the orthidist was. I feel like I was rounding his

> head at the expense of his usually happy personality. The

> neuroligist agreed with me. We are going to him for a follow up

> next week. Has anyone else had an experience like this. If so

how

> did your childs head grow without correction

> Thank you!!

>

> Pamela Luke's mom