NEW MEMBER

Report post · August 1, 2000

Gabby:

Welcome to the group. I'll do my best to answer some of your questions.....

first -how do you choose what type of dr to go with?

choose a craniofacial plastic surgeon, a neurosurgeon, or a neurologist.

second - how did you choose between the helmet and the doc band?

We only had one choice - the band. We are VERY happy with the

results so far!! For many it is availability, for some it is financial.

The helmets usually go for less than the bands.

I

read something tonight about the band possibly hindering brain growth

and that frightened me?

Here is an article that researched bands and brain growth. Bands

do not restrict brain growth!

http://www.cranialtech.com/infocenter/publications/peds.pdf

Thirdly - why is the band FDA approved and

the helmet is not?

Several years ago, Cranial Tech. was approached by the FDA to prove

that their bands were safe. I believe it took them 2 years to prove

their case ( and achieve FDA approval). Recently, the FDA made a

requirement for all helmet manufacturers to obtain FDA approval.

While these manufacturers collect and submit their data (to obtain approval),

many are having parents sign a waiver to protect themselves until they

get approved. Others have stopped making their helmets all together

until they are approved. Because a helmet is not approved doesn't

mean it doesn't work. It simply means that the FDA has not read thru

that particular manufacturers case, or that they haven't yet submitted

a case. It can take from 6 months to several years to obtain FDA

approval.

If you wish to discuss this topic further, there is an FDA eGroup.

Finally- did anybody have trouble nursing with the

band or helmet?

Hanna wouldn't nurse (!!!!), so I can't speak from experience, but several

moms have nursed with bands/helmets. Some find it a bit uncomfortable.

One mom cut the feet off of long sport socks to cover her arms to protect

them from the velcro, etc.

Hope this helps you out. Good luck at your appt.!!

Kendra

todd537@... wrote:

hi my name is gabby and my daughter also has

positional

plagiocephaly. we brought it to the drs attention at her

2 month

check and he told us to reposition her. We try but she certainly

favors her right side. Tomorrow is her 4 month check and

we already

got a referral to see a plastic surgeon next week. Although

the back

of her head is looking better, her ears seem to be a little off.

I

understand this is a common occurance. Anyway I have a few

questions: first -how do you choose what type of dr to go with?

second - how did you choose between the helmet and the doc band?

I

read something tonight about the band possibly hindering brain

growth

and that frightened me? Thirdly - why is the band FDA approved

and

the helmet is not? Finally- did anybody have trouble nursing with

the

band or helmet? I would greatly appreciate some advice. I just

joined

this group and would love to hear from other concerned parents

Report post · August 1, 2000

> hi my name is gabby and my daughter also has positional

> plagiocephaly. we brought it to the drs attention at her 2 month

> check and he told us to reposition her. We try but she certainly

> favors her right side. Tomorrow is her 4 month check and we

already

> got a referral to see a plastic surgeon next week. Although the

back

> of her head is looking better, her ears seem to be a little off. I

> understand this is a common occurance. Anyway I have a few

> questions: first -how do you choose what type of dr to go with?

You may want to see if a PT could help you out also. Where are you

located? We went to a PT that was with the CT clinic in Madison it

was excellent the things she showed me to do for strengthening. Do

they thing your daugther has tort also??

> second - how did you choose between the helmet and the doc band?

Can't help on this one as we are not to that stage yet. It seems we

may be happy with just working with PT. I

> read something tonight about the band possibly hindering brain

growth

> and that frightened me? Thirdly - why is the band FDA approved and

> the helmet is not? Finally- did anybody have trouble nursing with

the

> band or helmet? I would greatly appreciate some advice. I just

joined

> this group and would love to hear from other concerned parents

This group has helped me tremendously! My son is almost 5 months old

and I to had concerns at 2 months and was told to reposition. But

that was not enough. At 4 months they scared me about his head being

fused or not fused, neurosurgeons etc. I then found the CT site and

then this egroup. Don't hesitate too ask any of us questions. My

son favors his left side so for the last 3 weeks we have positioned

everything on his right. For sleeping we use a travel bud so he

sleeps on his right side. (Check out www.snuglbuds.com) When he is

on his back we use a butterfly pillow to releive pressure on his

head. (also from snuglbuds) We work every day on a getting him to

enjoy his tummy more and more. You can roll up receiving blankets

and put them under the armpits so the child rests on elbows. (This

will eleviate pressure on the tummy that they are not too used too)

Lots of time in a walker or a exersaucer is awesome for them too.

Hope some of this helps. Take care!

Report post · August 22, 2000

-

Best wishes & how great that you guys are able to treat Clint so early!!

Yay for Mom!

Kimry,

Mom to Abby, DOC band graduate

Report post · August 26, 2000

:

Make sure you go into your appointment armed with information. Many of us

have faced pediatricians who insist the head will round out on its own and

say that treatment is not needed. If you haven't been there, go to

www.cranialtech.com. They make the DOC band to correct plagio but also have

a ton of info on their web site.

Please keep us posted and ask any questions you have.

Sue Luck

mom to (almost done with DOC band!!)

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

From: Cleveland <OpheliaBlue@...>

Sent: Friday, August 25, 2000 12:39 AM

Subject: New Member

> Just Wanted To Say Hello To Everyone. I Never Even Knew This Existed Till

My Son Got It. He's Almost Five Months Old Now And Im Just Now Finding Out

This Could Become Permanant. This Monday Is His Appointment With His

Pediatrician. Im Sure She Can Suggest Some Options.

> Have A Happy Day

>

> Get your FREE Email and Voicemail at Lycos Communications at

> http://comm.lycos.com

>

Report post · August 26, 2000

In a message dated 8/24/00 9:40:40 PM Pacific Daylight Time,

OpheliaBlue@... writes:

<< Im Sure She Can Suggest Some Options.

>>

, Let's hope your ped is up to date on plagio. Many of our drs here

put us off for several months. My 11mos son has been in helmet/PT since Jan.

The treatment has made a world of difference. He has about another 2months

left in helmet. Good luck and let us know what happens. Belinda(Indiana)

Report post · September 2, 2000

In a message dated 9/1/00 7:47:01 PM Pacific Daylight Time,

ladydiver@... writes:

<< I am not looking to the long commutes to Chicago

from Cincinnati every other weekend, but I realize it is in my son's

best interest so I'll do anything to help him. I would love any

advice and/or feedback!

>>

- Welcome. So glade you found us. It will all be worth it! You'll get

results just may take a little longer since your child is 11 months but don't

worry, depends on those growth spurts. You may see good results fast. My

son was 6 months when he got his and out grew it in 7 1/2 weeks. Saw some

good results in that time.

Tammy & 12/8/99

Report post · September 2, 2000

Hi (from Cincinnati)!

My name is a and I also live in the Cincinnati area. My son, Jake, is 8

1/2 months old and we just picked up his DOC Band 1 1/2 weeks ago. Before

that we had a helmet from THE BRACE SHOP, I imagine this is where yours was

made too. Your story sounded sooooo familiar! I told my husband it was

like reading one of my own e-mail messages. We were so frustrated with the

helmet from The Brace Shop, it would never stay on. We went back about 6

times in one month and the helmet still wouldn't stay on. We started

calling it the " expensive teething ring " . How long did your son try to wear

the local helmet? We tried for about 1 month. I am so glad to hear that

you are going to CT. I am amazed at how much better the band fits! Jake

hasn't pulled the band off once! Our life is so much easier now, and we

feel like we are doing something to solve our son some problems!

, the person you met at Babies R Us, told us to watch for you! See

knew that some of us could relate to your story. I think there are about 5

of us in the Cincinnati area now (that we know of). I was like you when I

found out about this site and Cranial Technologies. When I saw the picture

on the CT site of the head from the top down showing the flat spot, etc. I

said " that's Jake " . I felt so much relief just knowing that there are

people out there who are familiar with our situation. The doctor's office

didn't even tell me it had a name (Plagiocephaly)! From what I have read

your son can still see improvement staring the band at 11 months of age.

Like Tammy said, it might just take a little longer. Feel free to email me

directly at pwaggoner@....

The bottom line is --- YIPPEE, you've found us - you are not the only one

dealing with this problem!

Jake and I have an appointment on Thursday, September 7th at CT Chicago.

When will you be going?

Look forward to hearing from you,

a

ladydiver@... wrote:

>

> Hi,

>

> My son is eleven-months-old and scheduled to receive the DOC band

> this month from Cranial Tech. in Chicago. We are excited to take him

> there because we've heard that these bands work and the staff is very

> helpful and monitors the progress of the band. Since he is older, we

> hope that improvement can still be made. He was in a different

> helmet before from another company that made them in Cincinnati, OH

> but the helmet was a poor fit and never worked correctly or stayed on

> his head. We also received extrememly poor customer service and

> follow-through from this other place, and in the end, felt as though

> we had lost valuable correction time. If there is anybody else in

> the Cincinnati, OH area I'd love to hear from you! I met another

> woman in Babies R' Us who's son also had plagiocephaly and she was

> very helpful. Before I met her, I was unaware that this website or

> any other sites on plagiocephaly existed. I felt as though my son

> was the only one that had this issue, and at times I felt guilty for

> not preventing it. I hope and pray that correction can still be made

> since he is older. I am not looking to the long commutes to Chicago

> from Cincinnati every other weekend, but I realize it is in my son's

> best interest so I'll do anything to help him. I would love any

> advice and/or feedback!

>

Report post · September 2, 2000

:

Glad you are able to get to Chicago for treatment for your son. We traveled

from Cleveland to Chicago and were very happy with the care and results from

the DOC band.

Best of luck and safe travels.

Sue Luck

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

From: <ladydiver@...>

Sent: Friday, September 01, 2000 10:46 PM