Re: Plagio Rage

October 14, 2009

I don't want to discount the role of Back To Sleep in plagio--but I guess I'm just not feeling the rage.

My older two were flat on their backs nearly all the time--hated tummy time--and had no plagio or brachio whatsoever. We really didn't use the carrier or a swing much--they were either being held or on a blanket or in the crib, flat. What caused plagio in my third? I don't know. I think it was more related to torticollis; he spent a lot of time flat also, but he couldn't turn his head to get off the one side.

I'm very curious to see what percentage of plagio babies also have torticollis--

and what percentage spent a lot of time in car seats/carriers or swings.

It seems my older two boys spent a LOT of floor time and crib time on their backs, but they had free range of motion to turn their heads. I wonder if it's harder to lay in a variety of positions in a car seat/carrier or swing?

Just curious if many of you really had children *flat on their backs*, without torticollis, and ended up with plagio or brachio (sp?).

Nothing to argue with this post in particular; it just brings to mind those questions of mine whenever I read "back to sleep leads to plagio" and I forget to take my informal polls--

Betsy

From: nrob1230 <robbins1230@...>Subject: Plagio RagePlagiocephaly Date: Wednesday, October 14, 2009, 12:59 PM

I wanted to write a post about something that I hear in many posted messages, and it is something that I definitely experience myself on occasion... plagio rage. As I hear many of you saying, you want the best for your child and you do all you can to give them the best opportunities in life. So of course it is upsetting when you look over the top of your baby's head one day and see flattening. I remember that moment acutely - I remember thinking 'Oh my gosh, I've heard of this. We weren't diligent enough parents. Not enough tummy time.' Etc. Since then, I have sometimes felt feelings of guilt but I also would be lying if I didn't acknowledge that I feel angry as well. I have read some posts where people express anger at the pediatrician. Mostly though my anger is directed at the Back to Sleep Campaign. Of course, I know that this campaign has saved lives, so I feel bad feeling anger toward them. And maybe when the campaign was

designed they had no way of knowing what the consequences would be for some babies. But now there is plenty of evidence out there to show the negative side effects of the campaign, and in my opinion there is not enough being done to make modifications to the recommendations they put forward. I did sign the petition that was circulated about this, and it felt good to do that, but I still feel angry. It seems what they've done so far amounts to creating a slogan in hopes of remedying the problem: "Back to sleep, tummy to play." But many babies have positional deformities by the time they are 6 weeks old. 6 week old babies do not play much and they sleep the majority of the day. So 'tummy to play' at this age is not going to be enough to off-set the great number of hours that babies spend sleeping 'on their backs' as the campaign recommends. I wish the campaign would modify their message to one of moderation.. that babies position should be

changed frequently and they should not spend too much time in ANY one position - including their backs. I wish they would do research and release research-based guidelines about the maximum number of hours a day that babies can safely be placed on their backs. Etc. These are just a few ideas.. but honestly anything would be better than the silence we have gotten from them so far.I feel like positional deformities are not taken seriously because the benefits of the campaign have been 'life saving'. But in my opinion there are ways to save lives without creating new problems. As we all know, the problems they have created are not just cosmetic. There can be clear medical difficulties associated with positional deformities (eg., jaw issues, etc.). But also, the emotional distress of parents should not be minimized. I am sure many of us have spend hours upon hours feeling anxious and hyper-vigilant about our babies heads, and would do anything to

have spent that time simply enjoying our babies. Heck, this has even at times put a strain on my marriage, when I hound my husband over and over to remember to keep her off her head, etc.Anyway, sorry for the rant. But I thought it might help to share the fact that none of us is alone in our frustration and anger - wherever it gets directed.

October 14, 2009

My brother thinks the Back To Sleep campaign is way over done. He says

what they fail to mention is that where certain risks factors are

involved, lots lives are saved. However, if your baby doesn't have

these risks factors, it doesn't make much difference. I'm not sure of

the validity of this. I can tell my brother thinks a mildly flat head

is absolutely no problem, and it is not just because of plagio that he

criticizes the SIDS campaign. If I had another baby, I would arrange

for supervised naps on the stomach. This would be a perfect job for a

grandma when she visits.

One thing I find odd about our case is how much it continued to get

worse after even 7 months when he was crawling. We and our

pediatrician knew to watch the head, but we all thought after 6 months

we were okay since it was barely flat at this time. My son was out of

the swing and bouncer by then and not riding in the car seat much. He

did go for long walks in the stroller and often fell asleep though with

his head turned right more than left.

-Kathy

Betsy wrote:

I don't want to discount the role of Back To Sleep in

plagio--but I guess I'm just not feeling the rage.

My older two were flat on their backs nearly all the

time--hated tummy time--and had no plagio or brachio whatsoever. We

really didn't use the carrier or a swing much--they were either being

held or on a blanket or in the crib, flat. What caused plagio in my

third? I don't know. I think it was more related to torticollis; he

spent a lot of time flat also, but he couldn't turn his head to get off

the one side.

I'm very curious to see what percentage of plagio babies

also have torticollis--

and what percentage spent a lot of time in car

seats/carriers or swings.

It seems my older two boys spent a LOT of floor time and

crib time on their backs, but they had free range of motion to turn

their heads. I wonder if it's harder to lay in a variety of positions

in a car seat/carrier or swing?

Just curious if many of you really had children *flat on

their backs*, without torticollis, and ended up with plagio or brachio

(sp?).

Nothing to argue with this post in particular; it just

brings to mind those questions of mine whenever I read "back to sleep

leads to plagio" and I forget to take my informal polls--

Betsy

From: nrob1230 <robbins1230comcast (DOT) net>

Subject: Plagio Rage

Plagiocephaly

Date: Wednesday, October 14, 2009, 12:59 PM

I wanted to write a post about something that I hear in

many posted messages, and it is something that I definitely experience

myself on occasion... plagio rage. As I hear many of you saying, you

want the best for your child and you do all you can to give them the

best opportunities in life. So of course it is upsetting when you look

over the top of your baby's head one day and see flattening. I remember

that moment acutely - I remember thinking 'Oh my gosh, I've heard of

this. We weren't diligent enough parents. Not enough tummy time.' Etc.

Since then, I have sometimes felt feelings of guilt but I also would be

lying if I didn't acknowledge that I feel angry as well. I have read

some posts where people express anger at the pediatrician. Mostly

though my anger is directed at the Back to Sleep Campaign.

Of course, I know that this campaign has saved lives, so I feel bad

feeling anger toward them. And maybe when the campaign was designed

they had no way of knowing what the consequences would be for some

babies. But now there is plenty of evidence out there to show the

negative side effects of the campaign, and in my opinion there is not

enough being done to make modifications to the recommendations they put

forward.

I did sign the petition that was circulated about this, and it felt

good to do that, but I still feel angry. It seems what they've done so

far amounts to creating a slogan in hopes of remedying the problem:

"Back to sleep, tummy to play." But many babies have positional

deformities by the time they are 6 weeks old. 6 week old babies do not

play much and they sleep the majority of the day. So 'tummy to play' at

this age is not going to be enough to off-set the great number of hours

that babies spend sleeping 'on their backs' as the campaign recommends.

I wish the campaign would modify their message to one of moderation..

that babies position should be changed frequently and they should not

spend too much time in ANY one position - including their backs. I wish

they would do research and release research-based guidelines about the

maximum number of hours a day that babies can safely be placed on their

backs. Etc. These are just a few ideas.. but honestly anything would be

better than the silence we have gotten from them so far.

I feel like positional deformities are not taken seriously because the

benefits of the campaign have been 'life saving'. But in my opinion

there are ways to save lives without creating new problems. As we all

know, the problems they have created are not just cosmetic. There can

be clear medical difficulties associated with positional deformities

(eg., jaw issues, etc.). But also, the emotional distress of parents

should not be minimized. I am sure many of us have spend hours upon

hours feeling anxious and hyper-vigilant about our babies heads, and

would do anything to have spent that time simply enjoying our babies.

Heck, this has even at times put a strain on my marriage, when I hound

my husband over and over to remember to keep her off her head, etc.

Anyway, sorry for the rant. But I thought it might help to share the

fact that none of us is alone in our frustration and anger - wherever

it gets directed.

October 14, 2009

My daughter didn't have torticollis and had plagio. A doctor has never said

this, but her plagio is from sucking her thumb for comfort (which would

essentially then mimic what tort would do because she wouldn't turn her head the

other direction if she was sucking her thumb). Anytime she went to sleep or was

bored or needed to comfort herself, she would suck her thumb and her head turned

to the right. She never would take a pacifier instead.

Had I known anything about plagio, I would have been aggressive about

repositioning her head early on. By the time I had mentioned it to her ped, she

was already into the habit and if I turned her head the other way, it disturbed

her sleep and she turned it back to suck her thumb. Had she been sleeping on

her tummy, we'd have never had the plagio issue.

>

> I don't want to discount the role of Back To Sleep in plagio--but I guess I'm

just not feeling the rage.

>

> My older two were flat on their backs nearly all the time--hated tummy

time--and had no plagio or brachio whatsoever. We really didn't use the carrier

or a swing much--they were either being held or on a blanket or in the crib,

flat. What caused plagio in my third? I don't know. I think it was more

related to torticollis; he spent a lot of time flat also, but he couldn't turn

his head to get off the one side.

>

> I'm very curious to see what percentage of plagio babies also have

torticollis--

> and what percentage spent a lot of time in car seats/carriers or swings.

>

> It seems my older two boys spent a LOT of floor time and crib time on their

backs, but they had free range of motion to turn their heads. I wonder if it's

harder to lay in a variety of positions in a car seat/carrier or swing?

>

> Just curious if many of you really had children *flat on their backs*, without

torticollis, and ended up with plagio or brachio (sp?).

>

> Nothing to argue with this post in particular; it just brings to mind those

questions of mine whenever I read " back to sleep leads to plagio " and I forget

to take my informal polls--

>

> Betsy

>

October 15, 2009

Tortecollis was also a factor in my sons plagio. I was told by my pediatrician

and Early Intervention, that they normally go hand in hand, although in some

cases of plagio that seems to not be the case.

I was told that because the neck muscles are so short and tight, they pull the

head down and therefore affects their range of motion.

My son also spends a lot of time in his car seat only because of all the

traveling due to his medical needs. Some of our doctors are almost a two hour

drive.

>

> From: nrob1230 <robbins1230@...>

> Subject: Plagio Rage

> Plagiocephaly

> Date: Wednesday, October 14, 2009, 12:59 PM

>

> I wanted to write a post about something that I hear in many posted messages,

and it is something that I definitely experience myself on occasion... plagio

rage. As I hear many of you saying, you want the best for your child and you do

all you can to give them the best opportunities in life. So of course it is

upsetting when you look over the top of your baby's head one day and see

flattening. I remember that moment acutely - I remember thinking 'Oh my gosh,

I've heard of this. We weren't diligent enough parents. Not enough tummy time.'

Etc.

>

> Since then, I have sometimes felt feelings of guilt but I also would be lying

if I didn't acknowledge that I feel angry as well. I have read some posts where

people express anger at the pediatrician. Mostly though my anger is directed at

the Back to Sleep Campaign.

>

> Of course, I know that this campaign has saved lives, so I feel bad feeling

anger toward them. And maybe when the campaign was designed they had no way of

knowing what the consequences would be for some babies. But now there is plenty

of evidence out there to show the negative side effects of the campaign, and in

my opinion there is not enough being done to make modifications to the

recommendations they put forward.

>

> I did sign the petition that was circulated about this, and it felt good to do

that, but I still feel angry. It seems what they've done so far amounts to

creating a slogan in hopes of remedying the problem: " Back to sleep, tummy to

play. " But many babies have positional deformities by the time they are 6 weeks

old. 6 week old babies do not play much and they sleep the majority of the day.

So 'tummy to play' at this age is not going to be enough to off-set the great

number of hours that babies spend sleeping 'on their backs' as the campaign

recommends.

>

> I wish the campaign would modify their message to one of moderation.. that

babies position should be changed frequently and they should not spend too much

time in ANY one position - including their backs. I wish they would do research

and release research-based guidelines about the maximum number of hours a day

that babies can safely be placed on their backs. Etc. These are just a few

ideas.. but honestly anything would be better than the silence we have gotten

from them so far.

>

> I feel like positional deformities are not taken seriously because the

benefits of the campaign have been 'life saving'. But in my opinion there are

ways to save lives without creating new problems. As we all know, the problems

they have created are not just cosmetic. There can be clear medical difficulties

associated with positional deformities (eg., jaw issues, etc.). But also, the

emotional distress of parents should not be minimized. I am sure many of us have

spend hours upon hours feeling anxious and hyper-vigilant about our babies

heads, and would do anything to have spent that time simply enjoying our babies.

Heck, this has even at times put a strain on my marriage, when I hound my

husband over and over to remember to keep her off her head, etc.

>

> Anyway, sorry for the rant. But I thought it might help to share the fact that

none of us is alone in our frustration and anger - wherever it gets directed.

>

October 15, 2009

Thanks everyone for sharing your thoughts. From what I had come to understand,

there is normal variation in baby skull softness or in the speed that it takes

to harden. This could be why some kids' heads are more prone to flattening

(whether plagio or brachy). It seems something like this...

softer skull + too much time spent on back + something causing the baby to keep

their head in a particular position = plagio. And...

softer skull + too much time spent on back = brachy.

In other words, if my daughter did not have something causing her to keep her

head in a particular position, she might have still been at risk for brachy

rather than plagio because she had a softer than average skull.

My mind always goes back to the fact that the number of positional plagiocephaly

cases increased sixfold from 1992 to 1994, coinciding with the beginning of the

" Back to Sleep " campaign. To me, it seems pretty clear that the key factor to

the rate of increase is in the " too much time spent on back " part of the plagio

equation above.

I work in the area of child/family interventions. And, typically before puting

an interventino out there, you do a pilot study on a sample of people and keep

an eye out for " adverse events " . These do not have to be definitively caused by

the intervention, because this can sometimes be hard to prove. But there should

be a reasonable likelyhood that it could have been caused by the intervention.

When you see adverse events occuring, especially in significant numbers, then

you modify your intervention. You don't just say " well it seems ok for this

subsection of the population, but not that subsection...

let's go for it anyway. " This is where I believe the campaign was negligent.

At the very least, I could see them releasing additional guidelines such as --

" If the child is born premature, or if there is a family history of a softer

skull, or if the child seems to continually rest their head in a particular

position (for whatever reason) -- speak with your doctor for alternative

positioning recommendations. " But instead they stick hard and fast to the

" always put baby to sleep on their back " recommendation. Child care centers are

even required to put all babies to sleep on their back. Generations of us were

put to sleep on our tummies as babies. It's as though the mindset is that we all

narrowly escaped with our lives somehow.

Anyway, sorry to vent about this. I really just wanted to acknowledge the

frustration that many of us parents sometimes experience, whether the

frustration is directed at the pediatrician, the back to sleep campaign, or

wherever.

Thanks again!

> >

> > From: nrob1230 <robbins1230@>

> > Subject: Plagio Rage

> > Plagiocephaly

> > Date: Wednesday, October 14, 2009, 12:59 PM

> >

> > I wanted to write a post about something that I hear in many posted

messages, and it is something that I definitely experience myself on occasion...

plagio rage. As I hear many of you saying, you want the best for your child and

you do all you can to give them the best opportunities in life. So of course it

is upsetting when you look over the top of your baby's head one day and see

flattening. I remember that moment acutely - I remember thinking 'Oh my gosh,

I've heard of this. We weren't diligent enough parents. Not enough tummy time.'

Etc.

> >

> > Since then, I have sometimes felt feelings of guilt but I also would be

lying if I didn't acknowledge that I feel angry as well. I have read some posts

where people express anger at the pediatrician. Mostly though my anger is

directed at the Back to Sleep Campaign.

> >

> > Of course, I know that this campaign has saved lives, so I feel bad feeling