Re: New member...need advice

[Guest guest]

marie, I am also a member of the plagio group, also have twin boys, and also

live in Silicon Valley. We live in Santa Clara and I work in San . We are

scheduled to see Dr. Sheur (head of neurosurgery) at LPCH-Stanford on April 26th

for both of our boys who have positional plagio which developed post-birth.

I would love to chat with you if you'd like.

Semke Reeves

Thelen Reid & Priest LLP

>>> marie Scalzo Curry <acurry@...> 04/05/00 02:26PM >>>

Hello All,

First I'd like to say how happy I was to find this group....feeling really

isolated until now. I'm hoping to get some advice, support and information from

all of you.......

Here's our story.....We have twin boys, born 8mos ago, yesterday. The boys were

six weeks premature, and though they did have a stay in the NICU, had " no

longterm health issues " (per the pediatrician). (twin A) was born with

an extremely pronounced flat spot on the back of his head and one side of his

chin was flattened, also. We didn't realize til later that one ear was pushed

forward and that he his forehead was more prominent on one side than the other.

His head also seemed to turn more in one direction than another...Still, we were

told it would all round out with time. It is true that there was improvement,

but not what we expected!

I never would have know about this condition except for a friend whose son was

just diagnosed. When she described the symptoms, I nearly flipped....since

then, I've been doing a ton of research on the web to get a handle on this, and

of course, luckily, found this email group. Any thoughts, comments, advice

would be welcomed. We are making an appt. with our new pediatrician for Friday

and I've called Stanford university (we live in Silicon Valley) to ask for the

name of a pediatric neurosurgeon.

Here are my concerns, other than the obvious......

it seems that some pediatricians won't do anything or give a referral....will a

neurosurgeon require a referral in order to see us?

Since is already 8mos and it appears that there could be as much as a

several month wait to get in to see anyone....how much will it hinder his

chances for improvement?

I'm not opposed to him wearing a device (headband/helmet) but hear they can be

costly (not covered by insurance?) and that success is better when treatment is

started early. What is the difference (physical) between a headband and a

helmet?

I'm not sure how to start, just know that I have a sense of urgency! Need help

understanding what to expect and how to push forward thru unyielding Drs.

I'm so mad for having been so trusting and waiting so long before I taking

matters into my own hands.

Thanks for letting me ramble......

Regards,

marie

marie Scalzo Curry

Contracts Compliance Program Mgr.

Contract Performance Group

408/527-5716 phone

408/526-4487 fax

800/365-4578 pager

Cisco Systems, Inc.

email: acurry@...

170 W. Tasman Drive

San , CA 95134

http://www.cisco.com

------------------------------------------------------------------------

Get a NextCard Visa, in 30 seconds!

1. Fill in the brief application

2. Receive approval decision within 30 seconds

3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

Apply NOW!

1/975/3/_/689409/_/954970029/

------------------------------------------------------------------------

[Guest guest]

I also have twin boys and so does Jill. One of my twin boys was born

with torticollis (his pic file is andy) and was not diagnosed until he

was 6 months old by our 4th pediatrician. all his pics, even the

newborn ones, show obvious torticollis (except to us at the time who did

not know any better). We cannot imagine why noone caught this..

certainly the risk factor of contricted utrerine environment applies

here! It is just plain sickening some of the doctors who are liscenced

and really should be disbarred. thanks for listening to my rant.. my

twins are 9 months and Andy still has torticollis, tilted jaw,

innercanthus fold on the left eye and slight plagiocephaly of the head,

one bulging cheek.

[Guest guest]

I, too, agree that some of these drs don't know what they are doing or they

are not concerned. As a matter of fact, I have my ear to the tv. On 20/20

they are talking about medical mistakes. It is unbelievable!!!!! We also were

pushed aside and had to change drs. Thank god we moved ahead and did not have

that much confidence in first ped. Unfortunately, we lost time anyway.

Belinda(Indiana)

[Guest guest]

Hey marie

I see that responded to you -- I was hopimg she would! Glad to see

you here.

Rose

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

From: marie Scalzo Curry <acurry@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Wednesday, April 05, 2000 2:27 PM

Subject: New member...need advice

>Hello All,

>

>First I'd like to say how happy I was to find this group....feeling really

isolated until now. I'm hoping to get some advice, support and information

from all of you.......

>

>Here's our story.....We have twin boys, born 8mos ago, yesterday. The boys

were six weeks premature, and though they did have a stay in the NICU, had

" no longterm health issues " (per the pediatrician). (twin A) was

born with an extremely pronounced flat spot on the back of his head and one

side of his chin was flattened, also. We didn't realize til later that one

ear was pushed forward and that he his forehead was more prominent on one

side than the other. His head also seemed to turn more in one direction

than another...Still, we were told it would all round out with time. It is

true that there was improvement, but not what we expected!

>

>I never would have know about this condition except for a friend whose son

was just diagnosed. When she described the symptoms, I nearly

flipped....since then, I've been doing a ton of research on the web to get a

handle on this, and of course, luckily, found this email group. Any

thoughts, comments, advice would be welcomed. We are making an appt. with

our new pediatrician for Friday and I've called Stanford university (we live

in Silicon Valley) to ask for the name of a pediatric neurosurgeon.

>

>Here are my concerns, other than the obvious......

>it seems that some pediatricians won't do anything or give a

referral....will a neurosurgeon require a referral in order to see us?

>Since is already 8mos and it appears that there could be as much as

a several month wait to get in to see anyone....how much will it hinder his

chances for improvement?

>I'm not opposed to him wearing a device (headband/helmet) but hear they can

be costly (not covered by insurance?) and that success is better when

treatment is started early. What is the difference (physical) between a

headband and a helmet?

>

>I'm not sure how to start, just know that I have a sense of urgency! Need

help understanding what to expect and how to push forward thru unyielding

Drs.

>

>I'm so mad for having been so trusting and waiting so long before I taking

matters into my own hands.

>

>Thanks for letting me ramble......

>Regards,

>marie

>

>marie Scalzo Curry

>Contracts Compliance Program Mgr.

>Contract Performance Group

>408/527-5716 phone

>408/526-4487 fax

>

>800/365-4578 pager

>Cisco Systems, Inc.

>email: acurry@...

>170 W. Tasman Drive

>San , CA 95134

>http://www.cisco.com

>

>

>

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

>Get a NextCard Visa, in 30 seconds!

>1. Fill in the brief application

>2. Receive approval decision within 30 seconds

>3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

>Apply NOW!

>1/975/3/_/689409/_/954970029/

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

>

>

[Guest guest]

Hi marie,

First of all, that's so sas that your first ped . was of no help to your

son's condition. It's unfortunate that your friends little one has

plagiocephaly, but good that she was able to help you with her information.

I also have twins, both boy's.Today is their 2nd B-day !(Happy B-day boy's

!) My Twin " A " is also the twin that has plagio. and torticollis.

As for your qeustions :

<<....will a neurosurgeon require a referral in order to see us? >>

I would think that that depends on your insurance, but maybe you could

inquire when you make the appt. at the neurosurgeon-perhaps they would just

consider it a free consult ??

<<SInce is already 8mos and it appears that there could be as much

as a several month wait to get in to see anyone....how much will it hinder

his chances for improvement?>>

No way to judge that really.Acting quick IS important when dealing with

this particular health concern. I think conditons are better if the

helmet/band are done before the age of 1.

<<> I'm not opposed to him wearing a device (headband/helmet) but hear they

can be costly (not covered by insurance?) >>

Our helmet was covered in full by our insurance.I'm not sure why others have

to fight for payment.

Good luck with your appt. with your new ped. and I hope he does you a

greater service than your past ped. )

~Jill

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

From: marie Scalzo Curry <acurry@...>

<Plagiocephalyegroups>

Sent: Wednesday, April 05, 2000 5:26 PM

Subject: New member...need advice

> Hello All,

>

> First I'd like to say how happy I was to find this group....feeling really

isolated until now. I'm hoping to get some advice, support and information

from all of you.......

>

> Here's our story.....We have twin boys, born 8mos ago, yesterday. The

boys were six weeks premature, and though they did have a stay in the NICU,

had " no longterm health issues " (per the pediatrician). (twin A)

was born with an extremely pronounced flat spot on the back of his head and

one side of his chin was flattened, also. We didn't realize til later that

one ear was pushed forward and that he his forehead was more prominent on

one side than the other. His head also seemed to turn more in one

direction than another...Still, we were told it would all round out with

time. It is true that there was improvement, but not what we expected!

>

> I never would have know about this condition except for a friend whose son

was just diagnosed. When she described the symptoms, I nearly

flipped....since then, I've been doing a ton of research on the web to get a

handle on this, and of course, luckily, found this email group. Any

thoughts, comments, advice would be welcomed. We are making an appt. with

our new pediatrician for Friday and I've called Stanford university (we live

in Silicon Valley) to ask for the name of a pediatric neurosurgeon.

>

> Here are my concerns, other than the obvious......

> it seems that some pediatricians won't do anything or give a

referral....will a neurosurgeon require a referral in order to see us?

SInce is already 8mos and it appears that there could be as much

as a several month wait to get in to see anyone....how much will it hinder

his chances for improvement?

> I'm not opposed to him wearing a device (headband/helmet) but hear they

can be costly (not covered by insurance?) and that success is better when

treatment is started early. What is the difference (physical) between a

headband and a helmet?

>

> I'm not sure how to start, just know that I have a sense of urgency! Need

help understanding what to expect and how to push forward thru unyielding

Drs.

>

> I'm so mad for having been so trusting and waiting so long before I taking

matters into my own hands.

>

> Thanks for letting me ramble......

> Regards,

> marie

>

> marie Scalzo Curry

> Contracts Compliance Program Mgr.

> Contract Performance Group

> 408/527-5716 phone

> 408/526-4487 fax

>

> 800/365-4578 pager

> Cisco Systems, Inc.

> email: acurry@...

> 170 W. Tasman Drive

> San , CA 95134

> http://www.cisco.com

>

>

>

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

> 1/975/3/_/689409/_/954970029/

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

>

>

[Guest guest]

Marie

I live in the Valley, too. I'll try to call you today.

Judy

[Guest guest]

Hi I've seen Dr. Sheur and he is very rude, i.e., " these are minor

imperfections which can be covered up by hair " . He is lacking in bedside

manner. He is also lacking in explaining how the condition improves itself.

He is also lacking in giving any kind of information regarding studies of

these kids' development over time. I was very unhappy with him. I went to

Phoenix to Dr. Cherny at the Barrow Institute and it was well worth my time

and money for he explained all of the above.

Judy

[Guest guest]

He said the back of the head will round out first, then the bump on the front

of the head will round out and lastly the ears will repostion. This of

course will take much longer than any device. The head grows tremendously

until 3 years of age.

Judy

[Guest guest]

Hi

He would have been glad to give me an Rx for a band. He said they definitely

work. But that nature corrects the mild to moderate cases as well.

Judy

[Guest guest]

Hi Judy,

I was just curious. Did your doc in Phoenix tell you that it would correct

on it's own, and if so, how did he explain the process?

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

From: <rmissirian@...>

<Plagiocephalyegroups>

Sent: Thursday, April 06, 2000 10:04 AM

Subject: Re: New member...need advice

> Hi I've seen Dr. Sheur and he is very rude, i.e., " these are minor

> imperfections which can be covered up by hair " . He is lacking in

bedside

> manner. He is also lacking in explaining how the condition improves

itself.

> He is also lacking in giving any kind of information regarding studies of

> these kids' development over time. I was very unhappy with him. I went

to

> Phoenix to Dr. Cherny at the Barrow Institute and it was well worth my

time

> and money for he explained all of the above.

>

> Judy

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/3/_/689409/_/955040762/

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

>

>

[Guest guest]

Hi Judy,

Are you saying that Dr. Cherny explained why helmets/headbands aren't a good

thing to do, and that you've decided *not* to get one? (we called the

Barrow Institute and was told that they aren't any better than letting the

condition fix itself, but didn't get much of an explanation.)

Did he cite any studies proving that helmets/headbands aren't useful?

How do they explain the fact that children can have weird-shaped heads even

after 18 mos? (that's the age by which my neurosurgeon says it corrects

itself.)

Do they have evidence that contradicts the literature that says the

condition sometimes doesn't fix itself?

I've read that after 6 months, repositioning doesn't help -- do they have

studies that contradict that?

thanks

a K

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

From: rmissirian@... [mailto:rmissirian@...]

Sent: April 06, 2000 11:04 AM

Plagiocephalyegroups

Subject: Re: New member...need advice

Hi I've seen Dr. Sheur and he is very rude, i.e., " these are minor

imperfections which can be covered up by hair " . He is lacking in bedside

manner. He is also lacking in explaining how the condition improves itself.

He is also lacking in giving any kind of information regarding studies of

these kids' development over time. I was very unhappy with him. I went to

Phoenix to Dr. Cherny at the Barrow Institute and it was well worth my time

and money for he explained all of the above.

Judy

------------------------------------------------------------------------

GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

1/936/3/_/689409/_/955040762/

------------------------------------------------------------------------

[Guest guest]

Hi Judy (again

I have seen 3 pediatricians and they have all said they same as your Doctor.

We are just now trying to decide if we are going to take the natural route

or not. It's such a hard decision. I feel like I'm looking for someone to

say that he definately needs the band (even though I don't want to put him

through that). I'm at a point now that I don't know what answer I'm looking

for anymore. If you don't mind me asking, have you decided whether to use a

orthotic device or to go with natural correction?

Thanks for the info

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

From: <rmissirian@...>

<Plagiocephalyegroups>

Sent: Thursday, April 06, 2000 10:04 AM

Subject: Re: New member...need advice

> Hi I've seen Dr. Sheur and he is very rude, i.e., " these are minor

> imperfections which can be covered up by hair " . He is lacking in

bedside

> manner. He is also lacking in explaining how the condition improves

itself.

> He is also lacking in giving any kind of information regarding studies of

> these kids' development over time. I was very unhappy with him. I went

to

> Phoenix to Dr. Cherny at the Barrow Institute and it was well worth my

time

> and money for he explained all of the above.

>

> Judy

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/3/_/689409/_/955040762/

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

>

>