Re: How common is plagiocephaly becoming?

March 21, 2000

>I asked a question on www.drpaula.com the other day and noticed a

>whole bunch of posts from people titled " lopsided head " and the like.

>I think there were 3 posts on one day! I wonder how common

>plagiocephaly is becoming with all the back sleeping going on and how

>many of those have torticollis? I also think twins are at greater

>risk and that pediatricians are not well enough aware of this. Just

>wondering aloud.. : ) diane

Talking to Tim Littlefield, the most recent research suggests that

plagiocephaly might occur in as many as 1 in 65 babies. Twins are indeed

slightly higher risk (especially " twin A " , the baby carried lower), as are

babies with torticollis. Other factors can be prematurity and a baby's in

utero positioning.

We're working on adding more information of this type to our webpage - once

we do, I'll give you all a head's up to check it out!

Thanks,

Hodges

Cranial Technologies

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March 21, 2000

,

The subject of whether or not a child's head will correct on its own is

*very* controversial. We do not believe that plagiocephaly is outgrown.

Not only do we have a number of patients from 12-18 months that still show

noticeable asymmetry, but even in the discussion board and this very mailing

list we notice the occasional message from a parent of a 3 or 4 year old who

wonders if it is too late to treat their child with a DOC Band.

The best suggestion I can give is simply to talk to the other parents,

either on this list or on the CTI discussion board. Many (if not most) were

told that in time the headshape would correct on its own, and they found

that it either stayed much the same or became more severe. Unfortunately,

there aren't any studies yet to prove that plagiocephaly doesn't go away

with time, but as I mentioned above there is plenty of clinical and

anecdotal evidence supporting that view.

Good luck,

Hodges

Cranial Technologies

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March 21, 2000

We had an appointment yesterday, for a second opinion, with a pediatric

neurosurgeon and he mentioned that this condition is now approaching epidemic

numbers, and that more doctors are becoming aware of the problem. I'm sure that

there still needs to be more education for them as well as the public. If I

would have known the preventative measures I could have taken, I would have been

more addiment with varying Ryne's positions.

In fact, after our appointment I called Cranial Tech. to set up an appointment

for Ryne's casting and was told, through our conversation that they were in the

process of hiring two new people to help in the office, because they have become

so busy over the last few months to a year.

March 21, 2000

Hi Shari....I feel the same way about all of this!!!! We, like many others

in the group were basically " blown off " about our sons condition. We also

ended up changing ped. I have even gone to the extent of logging onto medical

assoc and ped assoc web sites to get some answers ans see what is the cause

for lack of concern regarding our kids. I am even thinking about contacting

newspapers and tv shows to get them interested on tort/plagio. I feel that

more people, including medical students, need to be informed of this fast

growing " epidemic. " Belinda (Indiana)

March 21, 2000

Talking to Tim Littlefield, the most recent research suggests that

plagiocephaly might occur in as many as 1 in 65 babies. Twins

are indeed

slightly higher risk (especially "twin A", the baby carried lower),

as are

babies with torticollis. Other factors can be prematurity

and a baby's in

utero positioning.

We're working on adding more information of this type to our webpage

- once

we do, I'll give you all a head's up to check it out!

Thanks,

Hodges

Cranial Technologies

What's almost as disturbing is the ambivalence and/or outright hostility

shown by too many doctors toward early intervention. I've been told by

different physicians that "he'll grow out of it", or that headbands and

helmets are just quackery and that I should let nature take its course.

Okay, this is a new field and it's not been documented for decades, but

most parents aren't willing to risk letting their child grow up deformed

if they can do something about it.

So, aside from more research and well-controlled studies, how do we

convince the medical community that we need to be taken seriously when

our beloved baby's head looks like a flattened matzo ball???

I've already withdrawn my business from one pediatrician over this.

I still don't quite know what to say when a doctor accuses me of overreacting

to my son's oddly shaped noggin. (Aside from, "Good-bye and Good Riddance!")

Shari

sharipaul@...

March 21, 2000

,

I am confused about needing to get treatment. On the links section there

is a paper by Moss Neurosurgeon at Phoneix Children's hospital. He

said their study showed that letting nature take its course was just as

effective as using a band.

Are there any other studies out there that disprove this? We have an

appointment with Handler Neurosurgeon at Denver Children's Hospital

on Thursday. (I was given his name by your company.) I want to be armed

with as much information as I can. The other papers on the link site do

not seem to say specifically there is proof that intervention is needed or

else your baby will end up with a deformed head.

At 08:57 AM 3/21/00 -0800, you wrote:

>From: " Hodges " <gwhodges@...>

>

>>I asked a question on www.drpaula.com the other day and noticed a

>>whole bunch of posts from people titled " lopsided head " and the like.

>>I think there were 3 posts on one day! I wonder how common

>>plagiocephaly is becoming with all the back sleeping going on and how

>>many of those have torticollis? I also think twins are at greater

>>risk and that pediatricians are not well enough aware of this. Just

>>wondering aloud.. : ) diane

>

>Talking to Tim Littlefield, the most recent research suggests that

>plagiocephaly might occur in as many as 1 in 65 babies. Twins are indeed

>slightly higher risk (especially " twin A " , the baby carried lower), as are

>babies with torticollis. Other factors can be prematurity and a baby's in

>utero positioning.

>

>We're working on adding more information of this type to our webpage - once

>we do, I'll give you all a head's up to check it out!

>

>Thanks,

>

> Hodges

>Cranial Technologies

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

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March 21, 2000

I think it's important for all of us to spread the word to as many people

as possible. All of our friends and family have had many questions

over all of this, worried that this precious baby is in pain? slowed

developmentally?? brain damaged??? NO!! I tell them,

and print out as much info. as possible for them. The more we educate

our families and friends the more they can spread the word too.

(When Hanna gets her band and I have a picture of her, I'm going to

send out a sort of "announcement" with a picture of her crooked head &

a picture of her in her beautifully decorated band explaining to family

& friends exactly what is happening and why).

I know that one of the nurses at our clinic makes numerous trips around

our province every month to educate the doctors and nurses in all the hospitals,

in all the towns and cities in the area.

Ask if your clinic has this type of program. If not suggest they

implement one. Maybe YOU could be formally trained on the topic and

go from place to place yourself. Take your child as a prop???

All I'm saying, I guess, is KEEP TALKING!

Kendra (:

Shari Wendt wrote:

From: Shari Wendt <sharipaul@...>

Talking to Tim Littlefield, the most recent research suggests that

plagiocephaly might occur in as many as 1 in 65 babies. Twins

are indeed

slightly higher risk (especially "twin A", the baby carried lower),

as are

babies with torticollis. Other factors can be prematurity

and a baby's in

utero positioning.

We're working on adding more information of this type to our webpage

- once

we do, I'll give you all a head's up to check it out!

Thanks,

Hodges

Cranial Technologies

What's almost as disturbing is the ambivalence and/or outright hostility

shown by too many doctors toward early intervention. I've been told by

different physicians that "he'll grow out of it", or that headbands and

helmets are just quackery and that I should let nature take its course.

Okay, this is a new field and it's not been documented for decades, but

most parents aren't willing to risk letting their child grow up deformed

if they can do something about it.

So, aside from more research and well-controlled studies, how do we

convince the medical community that we need to be taken seriously when

our beloved baby's head looks like a flattened matzo ball???

I've already withdrawn my business from one pediatrician over this.

I still don't quite know what to say when a doctor accuses me of overreacting

to my son's oddly shaped noggin. (Aside from, "Good-bye and Good Riddance!")

Shari

sharipaul@...

March 21, 2000

Shari and all, did you read some of the posts on drpaula's site where

the people repeatedly say how their doctors brushed them off saying how

their babies will just outgrow it when the baby starts sitting

up/becomes more mobile? even one of the online doctors said as much! a

couple of people added their own comments on how their child did outgrow

it naturally, but I think it's terribly irresponsible for a doctor just

to say forget about it and make the mother feel stupid for even asking,

especially since WE all know that kids don't always just outgrow it. as

usual, I feel most doctors should not be practicing.. even board

certified is not a guarantee and many are total quacks. diane

& Kendra wrote:

> From: & Kendra <kbgarv@...>

>

> I think it's important for all of us to spread the word to as many

> people as possible. All of our friends and family have had many

> questions over all of this, worried that this precious baby is in

> pain? slowed developmentally?? brain damaged??? NO!! I tell them,

> and print out as much info. as possible for them. The more we educate

> our families and friends the more they can spread the word too.

> (When Hanna gets her band and I have a picture of her, I'm going to

> send out a sort of " announcement " with a picture of her crooked head &

> a picture of her in her beautifully decorated band explaining to

> family & friends exactly what is happening and why).

> I know that one of the nurses at our clinic makes numerous trips

> around our province every month to educate the doctors and nurses in

> all the hospitals, in all the towns and cities in the area.

> Ask if your clinic has this type of program. If not suggest they

> implement one. Maybe YOU could be formally trained on the topic and

> go from place to place yourself. Take your child as a prop???

> All I'm saying, I guess, is KEEP TALKING!

> Kendra (:

>

> Shari Wendt wrote:

>

>> From: Shari Wendt <sharipaul@...>

>>

>> >

>> > Talking to Tim Littlefield, the most recent research suggests that

>> > plagiocephaly might occur in as many as 1 in 65 babies. Twins are

>> > indeed

>> > slightly higher risk (especially " twin A " , the baby carried lower),

>> > as are

>> > babies with torticollis. Other factors can be prematurity and a

>> > baby's in

>> > utero positioning.

>> >

>> > We're working on adding more information of this type to our

>> > webpage - once

>> > we do, I'll give you all a head's up to check it out!

>> >

>> > Thanks,

>> >

>> > Hodges

>> > Cranial Technologies

>>

>> What's almost as disturbing is the ambivalence and/or outright

>> hostility shown by too many doctors toward early intervention. I've

>> been told by different physicians that " he'll grow out of it " , or

>> that headbands and helmets are just quackery and that I should let

>> nature take its course. Okay, this is a new field and it's not been

>> documented for decades, but most parents aren't willing to risk

>> letting their child grow up deformed if they can do something about

>> it.

>>

>> So, aside from more research and well-controlled studies, how do we

>> convince the medical community that we need to be taken seriously

>> when our beloved baby's head looks like a flattened matzo ball???

>>

>> I've already withdrawn my business from one pediatrician over this.

>> I still don't quite know what to say when a doctor accuses me of

>> overreacting to my son's oddly shaped noggin. (Aside from, " Good-bye

>> and Good Riddance! " )

>>

>> Shari

>> sharipaul@...

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

>> [Automatic, Safe, Reliable Backups and Restores.]

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>>

>

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March 21, 2000

You are right diane.I wonder how common it is too.It SEEMS that it is pretty

common, BUT to the doctors it isn't. I hear about lots of moms and dads

following their gut about their childs odd shaped head(even though ped .

did'nt notice anything out of the ordinary. It's a good thing that their are

a lot of parents that give the ped's the extra push that they need to get

info on plagio.

I wonder how many of us did our own investigating about plagio and how

many of us had indformed pediatricians?

Just some more wondering out loud...

~Jill

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

From: <diane@...>

Sent: Tuesday, March 21, 2000 10:22 AM

Subject: How common is plagiocephaly becoming?

> From: diane@...

>

> I asked a question on www.drpaula.com the other day and noticed a

> whole bunch of posts from people titled " lopsided head " and the like.

> I think there were 3 posts on one day! I wonder how common

> plagiocephaly is becoming with all the back sleeping going on and how

> many of those have torticollis? I also think twins are at greater

> risk and that pediatricians are not well enough aware of this. Just

> wondering aloud.. : ) diane

>

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

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March 21, 2000

sheri i too am sick of the looks i get when i talk about this.i just got home from the ped.s office and demanded a referral to a nerologist or a cranial facial suregon.i am sick and tired of hearing well my baby's head was like that and she turned out fine. in fact i told some friends of my moms off about it this weekend.i really dont even think the peds have any idea what im talking about . so i printed out lots of papers for them to look at told them they could have them . she didnt even look at them!, nut is giving me the refferal .jenna had head xrays today , im hoping to speed this process up since she will be 8 months this week

christi

-----Original Message-----From: Shari Wendt <sharipaul@...>Plagiocephalyonelist <Plagiocephalyonelist>Date: Tuesday, March 21, 2000 9:17 AMSubject: Re: How common is plagiocephaly becoming?From: Shari Wendt <sharipaul@...>

Talking to Tim Littlefield, the most recent research suggests that plagiocephaly might occur in as many as 1 in 65 babies. Twins are indeed slightly higher risk (especially " twin A " , the baby carried lower), as are babies with torticollis. Other factors can be prematurity and a baby's in utero positioning. We're working on adding more information of this type to our webpage - once we do, I'll give you all a head's up to check it out! Thanks, Hodges Cranial TechnologiesWhat's almost as disturbing is the ambivalence and/or outright hostility shown by too many doctors toward early intervention. I've been told by different physicians that " he'll grow out of it " , or that headbands and helmets are just quackery and that I should let nature take its course. Okay, this is a new field and it's not been documented for decades, but most parents aren't willing to risk letting their child grow up deformed if they can do something about it. So, aside from more research and well-controlled studies, how do we convince the medical community that we need to be taken seriously when our beloved baby's head looks like a flattened matzo ball??? I've already withdrawn my business from one pediatrician over this. I still don't quite know what to say when a doctor accuses me of overreacting to my son's oddly shaped noggin. (Aside from, " Good-bye and Good Riddance! " ) Shari sharipaul@...

March 21, 2000

I'm one of those parents of an older child who wonders if there is

anything else I can do for my son.He is the baby a of my twin son's.He is 23

months old now and he still had some mis-shapen parts to his head.He had the

helmet from 8 motnh to 12 months.We were told VERY matter of factly (by the

neurosurgeon and PT)that the helmet and nothing else could change his head

after his 1st birthday.

I'm still waitng for some new info as to what else is available for

older children.

I'm just grateful for boards like this that help me feel a little better

about falling for the dr's " his hair will grow and you won't even notice

it " . Now I realize that LOTS of doctors falsely tell their patients parents

this.Now I don't fall for every doctors line about " don't worry-he'll get

over it " when my children have medical problems.I'm more informed and less

scared to stand up to the doctor and ask for second opinions.