Re: Thanks to those trying to get the word out about plagio

[Guest guest]

,

I shed those tears, too, in doctor's offices, sitting here in front

of the computer, and at home watching my son play. You're certainly

not alone. It's hard to see some people who are in a position to

know better cling to their one-size-fits-all mentality for

diagnosing cases of plagio. Bravo to you for doing your own research

and getting your son into treatment at an appropriate time. Bravo to

you also for trying to share your knowledge with your pediatrician; I

thought I'd have a showdown with our former pediatrician but I

completely wimped out and just mumbled some words about my

disappointment in the lateness of her help (we got sent to the

neurosurgeon at 1 year). Don't let the peditrician's reaction keep

you from being glad that you did the right thing for your son.

Take care and good luck to you and your boy.

, Conor's mom, central PA

[Guest guest]

Congratulations , on having the courage to confront your

pediatrician. I can understand how upset you must have been at her

reaction. But, maybe somewhere in there, you struck a cord, and the

next time she sees a small baby with a bit of a flattening, she may

educate the parents on repositioning. Sure, she would never admit to

having a change of heart, but maybe...just maybe....

One of the worst things to me about plagiocephaly is the way in which

parents are made to feel guilty. We are made to feel responsible for

it happening in the first place, adn then criticised as being overly

concerned about something people assume is simply cosmetic. Lots of

things are cosmetic - cleft lips are for example, but parents of

cleft babies are not criticised for seeking plastic surgery to

correct it. What is more, there is evidence that plagio is more than

simply cosmetic.

Congratulations on having won the fight for treatment - your son will

be grateful for it, and you should feel proud of what you have

achieved. Good luck with the band.

Kimberley

(Mummy to Hope and Evan)

> I am mom to a son with Plagio. He has been in a DOC band for 9

weeks.

> We started treatment at 7 months only because we persisted not

> because of information or support by our pediatrician. Like many of

> the stories I have read on this board, our ped stated his abnormal

> head shape was only cosmetic and would round out in time. Also, she

> stated at 2 months old that it was the worst it would get. She

never

> told us that there was a name for positional head deformity or the

> importance of early treatment. She also never mentioned the

> possibility of misalignment. In fact, the shape of his head did

> worsen and a bulge started to appear over his ear.

>

> After doing research on my own I found statements that plagio is

not

> just cosmetic and believed to cause Migraines, TMJ, eyesight

problems

> and psychological consequences. After considering the possibilities

> of what could happen we decided that we were not willing to take

that

> chance. It was only after our insistence that we were referred to a

> specialist, an x-ray was done to rule out Craniosyntosis, and he

was

> casted for a band.

>

> I do understand that in some cases repositioning and time do help

the

> problem but what upsets me is that our pediatrician assumed that

> would be case. As a result, I am left feeling mislead by our ped

and

> frustrated (as many of us are) that there is not enough education

on

> the complexities of plagiocephaly.

>

> Yesterday was the first time we had met with our ped since our son

> got his band. I shared my concerns about not being fully informed

by

> her about plagio during our initial visits and what head

> abnormalities are believed to cause. I brought copies of the

articles

> and studies I found in CAPS & plagiocephaly.org as well as the AAP

> petition. Her reaction was very defensive and she expressed that in

> her 20 years of practicing she has never seen these problems. She

> also questioned that since the high occurrence of plagio has only

> recently become a problem, how can it be proved what it causes.

> Additionally she felt that information on the internet is not

> necessarily accurate.

>

> Needless to say I am feeling depressed and emotional. I actually

> cried in her office. I only wanted to share my experience with her

in

> hopes that she educates her patients on the complexities of plagio.

> Why are so many of us having to educate educate ourselves? I

> appreciate all of you who are doing something to get the word out.

>

> Regards,

>

[Guest guest]

Our pead was the opposite thankfully she insisted on us doing

something abour my daughters head,it took me 12 mths to get a consult

because my family did not think she needed any treatment(DOc band)and

I dident want to realy either. But I did and we got terrific results

(50%)improvement. My peads husband is a plastic surgeon so I think

thats why she is more imformed and shes a young mother and from the

new generation that sees progres and change. There alot to be said

about older Dr's,luckly we dont have one. My husband still thinks our

daughters head was ok and me and the pead were over reacting. I know

I'm right and hopefully Mackenzie will appreciate me for doing this

for her when she's older.

-- In Plagiocephaly@y..., ddp007@a... wrote:

> I am mom to a son with Plagio. He has been in a DOC band for 9

weeks.

> We started treatment at 7 months only because we persisted not

> because of information or support by our pediatrician. Like many of

> the stories I have read on this board, our ped stated his abnormal

> head shape was only cosmetic and would round out in time. Also, she

> stated at 2 months old that it was the worst it would get. She

never

> told us that there was a name for positional head deformity or the

> importance of early treatment. She also never mentioned the

> possibility of misalignment. In fact, the shape of his head did

> worsen and a bulge started to appear over his ear.

>

> After doing research on my own I found statements that plagio is

not

> just cosmetic and believed to cause Migraines, TMJ, eyesight

problems

> and psychological consequences. After considering the possibilities

> of what could happen we decided that we were not willing to take

that

> chance. It was only after our insistence that we were referred to a

> specialist, an x-ray was done to rule out Craniosyntosis, and he

was

> casted for a band.

>

> I do understand that in some cases repositioning and time do help

the

> problem but what upsets me is that our pediatrician assumed that

> would be case. As a result, I am left feeling mislead by our ped

and

> frustrated (as many of us are) that there is not enough education

on

> the complexities of plagiocephaly.

>

> Yesterday was the first time we had met with our ped since our son

> got his band. I shared my concerns about not being fully informed

by

> her about plagio during our initial visits and what head

> abnormalities are believed to cause. I brought copies of the

articles

> and studies I found in CAPS & plagiocephaly.org as well as the AAP

> petition. Her reaction was very defensive and she expressed that in

> her 20 years of practicing she has never seen these problems. She

> also questioned that since the high occurrence of plagio has only

> recently become a problem, how can it be proved what it causes.

> Additionally she felt that information on the internet is not

> necessarily accurate.

>

> Needless to say I am feeling depressed and emotional. I actually

> cried in her office. I only wanted to share my experience with her

in

> hopes that she educates her patients on the complexities of plagio.

> Why are so many of us having to educate educate ourselves? I

> appreciate all of you who are doing something to get the word out.

>

> Regards,

>

[Guest guest]

I am so sorry to hear about your unfortunate situation with your

sons Pedi it is unfortunate that you had to go thru with this. As

I am sure you have been told by others in our group there are Dr.s

out there willing to listen and to help. Good luck in finding one

for your son.

We didn't get treatment for our daughter until she was 8 mths. old and

even though she has Tort. and was treated by a PT we were still told

that it would take shape and not to worry that noone has a perfect

head shape. He even went so far as to point out a receptionist in his

office that had a very noticable flat spot.

Well we also looked up any and all info we could while waiting for the

results of her xrays and gave the web sites to him after we got the

all clear for Cranio. He was very appologetic it seemed that noone in

his office had been schooled in Plagio only in Cranio. that has since

changed.

So you see there are the good Dr.s out there who don't feel that they

are the all powerful who will be more than willing to accept new info.

or at least check into it no matter if it comes from a parent or a web

site.

Hope this gives you some hope. Here's to those Dr's and to the

parents who are trying to get things changed.

April

Mommy to Bri & Mandy

> I am mom to a son with Plagio. He has been in a DOC band for 9

weeks.

> We started treatment at 7 months only because we persisted not

> because of information or support by our pediatrician. Like many of

> the stories I have read on this board, our ped stated his abnormal

> head shape was only cosmetic and would round out in time. Also, she

> stated at 2 months old that it was the worst it would get. She never

> told us that there was a name for positional head deformity or the

> importance of early treatment. She also never mentioned the

> possibility of misalignment. In fact, the shape of his head did

> worsen and a bulge started to appear over his ear.

>

> After doing research on my own I found statements that plagio is not

> just cosmetic and believed to cause Migraines, TMJ, eyesight

problems

> and psychological consequences. After considering the possibilities

> of what could happen we decided that we were not willing to take

that

> chance. It was only after our insistence that we were referred to a

> specialist, an x-ray was done to rule out Craniosyntosis, and he was

> casted for a band.

>

> I do understand that in some cases repositioning and time do help

the

> problem but what upsets me is that our pediatrician assumed that

> would be case. As a result, I am left feeling mislead by our ped and

> frustrated (as many of us are) that there is not enough education on

> the complexities of plagiocephaly.

>

> Yesterday was the first time we had met with our ped since our son

> got his band. I shared my concerns about not being fully informed by

> her about plagio during our initial visits and what head

> abnormalities are believed to cause. I brought copies of the

articles

> and studies I found in CAPS & plagiocephaly.org as well as the AAP

> petition. Her reaction was very defensive and she expressed that in

> her 20 years of practicing she has never seen these problems. She

> also questioned that since the high occurrence of plagio has only

> recently become a problem, how can it be proved what it causes.

> Additionally she felt that information on the internet is not

> necessarily accurate.

>

> Needless to say I am feeling depressed and emotional. I actually

> cried in her office. I only wanted to share my experience with her

in

> hopes that she educates her patients on the complexities of plagio.

> Why are so many of us having to educate educate ourselves? I

> appreciate all of you who are doing something to get the word out.

>

> Regards,

>

[Guest guest]

I agree with your email in general, Kimberley. But as a mother of a son

with both plagiocephaly and a cleft lip, I must correct you.

A cleft lip even in its simplest, without the extra complications of

clefts of the palate, alveolar (gum) or submucosa, and even if it is not

a complete cleft into the nostril, is far from only cosmetic. In its

absolute mildest forms it affects speech and feeding. More complicated

clefts can affect ear health, hearing, speech and feeding. A cleft

requires surgery and other interventions over a number of years

depending on severity (even the mildest requires a repair in infancy and

reworking as a young adult). A cleft will leave a scar for life that can

not be fixed with a band nor surgery.

There are a lot of things a lot worse than a cleft lip. It is pretty

mild in the big scheme of things. But how do you really feel that

plagiocephaly rates. Yes it does affect children when left untreated, it

also affects parents whether treated or not. But it is not that bad, it

could have been craniosynostosis.

And Debbie, yes it is like your son will have a poor hair cut for the

rest of his life .... this may be true. But my daughter is not even 7yo

and her hair is falling out - big bald patches. And even in the scheme

of things there are children whose hair falls out and never grows back,

there are children who lose hair and more from cancer treatments.

So don't be so upset with your lot. It isn't that bad. God tells us to

count our blessings and all the children and parents here have plenty.

Joanne

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

From: kimberley.farrar@...

[mailto:kimberley.farrar@...]

Sent: Wednesday, 4 April 2001 2:43

Plagiocephaly

Subject: Re: Thanks to those trying to get the word out about

plagio

Congratulations , on having the courage to confront your

pediatrician. I can understand how upset you must have been at her

reaction. But, maybe somewhere in there, you struck a cord, and the

next time she sees a small baby with a bit of a flattening, she may

educate the parents on repositioning. Sure, she would never admit to

having a change of heart, but maybe...just maybe....

One of the worst things to me about plagiocephaly is the way in which

parents are made to feel guilty. We are made to feel responsible for

it happening in the first place, adn then criticised as being overly

concerned about something people assume is simply cosmetic. Lots of

things are cosmetic - cleft lips are for example, but parents of

cleft babies are not criticised for seeking plastic surgery to

correct it. What is more, there is evidence that plagio is more than

simply cosmetic.

Congratulations on having won the fight for treatment - your son will

be grateful for it, and you should feel proud of what you have

achieved. Good luck with the band.

Kimberley

(Mummy to Hope and Evan)

> I am mom to a son with Plagio. He has been in a DOC band for 9

weeks.

> We started treatment at 7 months only because we persisted not

> because of information or support by our pediatrician. Like many of

> the stories I have read on this board, our ped stated his abnormal

> head shape was only cosmetic and would round out in time. Also, she

> stated at 2 months old that it was the worst it would get. She

never

> told us that there was a name for positional head deformity or the

> importance of early treatment. She also never mentioned the

> possibility of misalignment. In fact, the shape of his head did

> worsen and a bulge started to appear over his ear.

>

> After doing research on my own I found statements that plagio is

not

> just cosmetic and believed to cause Migraines, TMJ, eyesight

problems

> and psychological consequences. After considering the possibilities

> of what could happen we decided that we were not willing to take

that

> chance. It was only after our insistence that we were referred to a

> specialist, an x-ray was done to rule out Craniosyntosis, and he

was

> casted for a band.

>

> I do understand that in some cases repositioning and time do help

the

> problem but what upsets me is that our pediatrician assumed that

> would be case. As a result, I am left feeling mislead by our ped

and

> frustrated (as many of us are) that there is not enough education

on

> the complexities of plagiocephaly.

>

> Yesterday was the first time we had met with our ped since our son

> got his band. I shared my concerns about not being fully informed

by

> her about plagio during our initial visits and what head

> abnormalities are believed to cause. I brought copies of the

articles

> and studies I found in CAPS & plagiocephaly.org as well as the AAP

> petition. Her reaction was very defensive and she expressed that in

> her 20 years of practicing she has never seen these problems. She

> also questioned that since the high occurrence of plagio has only

> recently become a problem, how can it be proved what it causes.

> Additionally she felt that information on the internet is not

> necessarily accurate.

>

> Needless to say I am feeling depressed and emotional. I actually

> cried in her office. I only wanted to share my experience with her

in

> hopes that she educates her patients on the complexities of plagio.

> Why are so many of us having to educate educate ourselves? I

> appreciate all of you who are doing something to get the word out.

>

> Regards,

>

[Guest guest]

Kimberley,

You sound like a wise woman. I didn't mean to imply that you were

belittling other problems but rather, I know that many people get so

wrapped up in their own problems that they forget about the other issues

in the world and they lose perspective. So what I would really hope is

that people remember that as bad as plagiocephaly (and almost everything

in life) is, there is a lot worse out there, and that through that they

come to an appreciation for their situation.

Joanne

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

From: kimberley.farrar@...

[mailto:kimberley.farrar@...]

Sent: Wednesday, 4 April 2001 9:28

Plagiocephaly

Subject: Re: Thanks to those trying to get the word out about

plagio

Dear Joanne,

I hope you dont feel that I was underestimating the impact of a cleft

lip, because I certainly didnt intend to. A friend of mine has a son

with a cleft, and I know how serious it can be, and that the

treatment for it is on a different level to simply wearing a band.

However, it was actually that friend who said to me that I should not

feel giulty about Hope wearing a helmet, because many things were

cosmetic, but nonetheless necessary, and she compared it in part to

her son's cleft. You're right about the additional aspects affecting

speech and eating though, and Im sorry if making a simple comparison

overlooked that.

I do indeed know how lucky we are to have been diagnosed with plagio

and nothing more serious, and I thank my lucky stars for it every

day. I dont mean to belittle the difficulties faced by those dealing

with other problems at all, and Im sorry if my post upset you for

that reason. Parents, and children, who deal with clefts deserve all

our admiration, and they certainly have mine.

Best wishes.

Kimberley

> > I am mom to a son with Plagio. He has been in a DOC band for 9

> weeks.

> > We started treatment at 7 months only because we persisted not

> > because of information or support by our pediatrician. Like many

of

> > the stories I have read on this board, our ped stated his

abnormal

> > head shape was only cosmetic and would round out in time. Also,

she

> > stated at 2 months old that it was the worst it would get. She

> never

> > told us that there was a name for positional head deformity or

the

> > importance of early treatment. She also never mentioned the

> > possibility of misalignment. In fact, the shape of his head did

> > worsen and a bulge started to appear over his ear.

> >

> > After doing research on my own I found statements that plagio is

> not

> > just cosmetic and believed to cause Migraines, TMJ, eyesight

> problems

> > and psychological consequences. After considering the

possibilities

> > of what could happen we decided that we were not willing to take

> that

> > chance. It was only after our insistence that we were referred to

a

> > specialist, an x-ray was done to rule out Craniosyntosis, and he

> was

> > casted for a band.

> >

> > I do understand that in some cases repositioning and time do help

> the

> > problem but what upsets me is that our pediatrician assumed that

> > would be case. As a result, I am left feeling mislead by our ped

> and

> > frustrated (as many of us are) that there is not enough education

> on

> > the complexities of plagiocephaly.

> >

> > Yesterday was the first time we had met with our ped since our

son

> > got his band. I shared my concerns about not being fully informed

> by

> > her about plagio during our initial visits and what head

> > abnormalities are believed to cause. I brought copies of the

> articles

> > and studies I found in CAPS & plagiocephaly.org as well as the

AAP

> > petition. Her reaction was very defensive and she expressed that

in

> > her 20 years of practicing she has never seen these problems. She

> > also questioned that since the high occurrence of plagio has only

> > recently become a problem, how can it be proved what it causes.

> > Additionally she felt that information on the internet is not

> > necessarily accurate.

> >

> > Needless to say I am feeling depressed and emotional. I actually

> > cried in her office. I only wanted to share my experience with

her

> in

> > hopes that she educates her patients on the complexities of

plagio.

> > Why are so many of us having to educate educate ourselves? I

> > appreciate all of you who are doing something to get the word

out.

> >

> > Regards,

> >

>

>

>

>

[Guest guest]

,

Are you from St. Louis? I'm sure we must have the same dr. (except

mine said 30 years ;0) Be proud that you have done what is best for

your baby! After 2 months in the band, my dr. has changed his tune

about Sam, although I can't say he will send others for refereals.

Hang in there.

and SAm

> I am mom to a son with Plagio. He has been in a DOC band for 9

weeks.

> We started treatment at 7 months only because we persisted not

> because of information or support by our pediatrician. Like many of

> the stories I have read on this board, our ped stated his abnormal

> head shape was only cosmetic and would round out in time. Also, she

> stated at 2 months old that it was the worst it would get. She

never

> told us that there was a name for positional head deformity or the

> importance of early treatment. She also never mentioned the

> possibility of misalignment. In fact, the shape of his head did

> worsen and a bulge started to appear over his ear.

>

> After doing research on my own I found statements that plagio is

not

> just cosmetic and believed to cause Migraines, TMJ, eyesight

problems

> and psychological consequences. After considering the possibilities

> of what could happen we decided that we were not willing to take

that

> chance. It was only after our insistence that we were referred to a

> specialist, an x-ray was done to rule out Craniosyntosis, and he

was

> casted for a band.

>

> I do understand that in some cases repositioning and time do help

the

> problem but what upsets me is that our pediatrician assumed that

> would be case. As a result, I am left feeling mislead by our ped

and

> frustrated (as many of us are) that there is not enough education

on

> the complexities of plagiocephaly.

>

> Yesterday was the first time we had met with our ped since our son

> got his band. I shared my concerns about not being fully informed

by

> her about plagio during our initial visits and what head

> abnormalities are believed to cause. I brought copies of the

articles

> and studies I found in CAPS & plagiocephaly.org as well as the AAP

> petition. Her reaction was very defensive and she expressed that in

> her 20 years of practicing she has never seen these problems. She

> also questioned that since the high occurrence of plagio has only

> recently become a problem, how can it be proved what it causes.

> Additionally she felt that information on the internet is not

> necessarily accurate.

>

> Needless to say I am feeling depressed and emotional. I actually

> cried in her office. I only wanted to share my experience with her

in

> hopes that she educates her patients on the complexities of plagio.

> Why are so many of us having to educate educate ourselves? I

> appreciate all of you who are doing something to get the word out.

>

> Regards,

>