Re: Becoming peaceful -- continued.

[Guest guest]

Hi,

I would post this to the older plagio list.

My older son's case sounds very comparable to your son's. I never

noticed or thought about it except for the couple times my husband

brought it up until my younger son was diagnosed. By then my older son

was nearing age 5. At the beginning, it still didn't bother me on my

older son. It was not until my younger son's head got better that it

started to disturb me. So, I think unfortunately once you go through

this plagio journey and the associated feelings of guilt, you tend to

become more sensitive to it.

One option, although not an easy one, that may help is NCR. Knowing

there may be something to do about the asymmetry when the time is right

may help you mentally.

Best,

Kathy, mom to 27 months, and turning 6 years

afschisler wrote:

Darn it - that sent before it was supposed to!

I was going to go on to say this: I am trying to be peaceful with the

asymmetry I can see now. But it is upsetting. It is not "in your face"

- again - it's only visible from certain angles, in some photos (not

all - in some photos you can't really tell at all), and in the mirror.

Sometimes it jumps out at me and looks REALLY obvious - sometimes I

look at him and almost can't see it.

I try to tell myself - so what? So what, his eyes aren't perfectly

symmetrical - they're a little off. Maybe it will get better. (Of

course my fear is it will get worse - there is no way to know as his

facial bones grow and develop.)

I am angry about his plagiocephaly - a condition that I feel was

preventable IF I'D HAD THE RIGHT INFORMATION. I am also unimpressed

with his orthotist - 2mm correction in 15 weeks? He grew more than that

during that time, a lot more. So why the minimal correction? I question

if his helmet ever really fit correctly (and we took him out of it

because one of the sideburns was pressing into his face.) No one at the

time suggested a second helmet (starband) was necessary, and so I never

pursued it (and was in fact advised not to by his specialist.)

I know I've done the best I can. I have investigated some alternative

therapies locally - but so far have been unimpressed (with the local

providers, a general lack of knowledge, etc.) I think that where we are

- is where we are.

And I'm not sure how to come to terms with it. And move on. And stop

looking - LOOKING at my son's face, his eyes, his forehead. At some

point, he'll notice, and wonder why and what I'm looking at. And I

don't want to do that to him, ever - maybe it will never bother him. So

I don't want to plant a poison seed.

I just feel RESPONSIBLE - and like I failed him. And I feel like others

failed him too. And HE has to live with our failings - because it's had

a physical effect - on his face. And it's painful.

Thanks for reading.

[Guest guest]

Hello,I think your reaction is very typical. I think it is very normal to blame yourself(I do it, too) but you must realize that it is not your fault. I do the same thing with my daughter--studying every single slight imperfection in her head. I think all moms probably do this after going through this ordeal. My daughter had less asymmetry in her face(2mm,) but my son had significant asymmetry in his eyes as a baby(not due to tort or plagio.) He's now almost four-years old and the asymmetry has definitely improved(no treatment required.) So, I will say, it is quite possible that you are going to see improvement in the remaining asymmetry. Stop blaming yourself! You are obviously a good mom to your son. Enjoy every moment with him!!!-Amy From: afschisler <afschisler@...>Plagiocephaly Sent: Thu, September 2, 2010 2:27:56 PMSubject: Becoming peaceful -- continued.

Darn it - that sent before it was supposed to!

I was going to go on to say this: I am trying to be peaceful with the asymmetry I can see now. But it is upsetting. It is not "in your face" - again - it's only visible from certain angles, in some photos (not all - in some photos you can't really tell at all), and in the mirror. Sometimes it jumps out at me and looks REALLY obvious - sometimes I look at him and almost can't see it.

I try to tell myself - so what? So what, his eyes aren't perfectly symmetrical - they're a little off. Maybe it will get better. (Of course my fear is it will get worse - there is no way to know as his facial bones grow and develop.)

I am angry about his plagiocephaly - a condition that I feel was preventable IF I'D HAD THE RIGHT INFORMATION. I am also unimpressed with his orthotist - 2mm correction in 15 weeks? He grew more than that during that time, a lot more. So why the minimal correction? I question if his helmet ever really fit correctly (and we took him out of it because one of the sideburns was pressing into his face.) No one at the time suggested a second helmet (starband) was necessary, and so I never pursued it (and was in fact advised not to by his specialist.)

I know I've done the best I can. I have investigated some alternative therapies locally - but so far have been unimpressed (with the local providers, a general lack of knowledge, etc.) I think that where we are - is where we are.

And I'm not sure how to come to terms with it. And move on. And stop looking - LOOKING at my son's face, his eyes, his forehead. At some point, he'll notice, and wonder why and what I'm looking at. And I don't want to do that to him, ever - maybe it will never bother him. So I don't want to plant a poison seed.

I just feel RESPONSIBLE - and like I failed him. And I feel like others failed him too. And HE has to live with our failings - because it's had a physical effect - on his face. And it's painful.

Thanks for reading.

[Guest guest]

Getting at peace with this is so hard to do. I was on the verge of that until we

did swim lessons at 18 mo and it hit the fan. No one in the NICU told me about

head shape and my original pediatrician did not say a thing. If I had known

about all this stuff I would have been all over it but unfortunately it is too

late. There needs to be more awareness and education amongst the pediatricians,

I honestly feel like I am the specialist when I talk to my pediatrician about it

and that should never be the case.

I think the ultimate test will be when your child is an adult and they are ok

with it. As mom's we are hypersensitive to everything about our children. I had

an eating disorder in HS and it broke my mom's heart. Now I am over it and I

know I will never be skinny. Maybe my son will be ok with his not perfect head.

We can only hope and focus on the positive.

> >

> >

> > Darn it - that sent before it was supposed to!

> >

> > I was going to go on to say this: I am trying to be peaceful with the

> > asymmetry I can see now. But it is upsetting. It is not " in your face "

> > - again - it's only visible from certain angles, in some photos (not

> > all - in some photos you can't really tell at all), and in the mirror.

> > Sometimes it jumps out at me and looks REALLY obvious - sometimes I

> > look at him and almost can't see it.

> >

> > I try to tell myself - so what? So what, his eyes aren't perfectly

> > symmetrical - they're a little off. Maybe it will get better. (Of

> > course my fear is it will get worse - there is no way to know as his

> > facial bones grow and develop.)

> >

> > I am angry about his plagiocephaly - a condition that I feel was

> > preventable IF I'D HAD THE RIGHT INFORMATION. I am also unimpressed

> > with his orthotist - 2mm correction in 15 weeks? He grew more than

> > that during that time, a lot more. So why the minimal correction? I

> > question if his helmet ever really fit correctly (and we took him out

> > of it because one of the sideburns was pressing into his face.) No one

> > at the time suggested a second helmet (starband) was necessary, and so

> > I never pursued it (and was in fact advised not to by his specialist.)

> >

> > I know I've done the best I can. I have investigated some alternative

> > therapies locally - but so far have been unimpressed (with the local

> > providers, a general lack of knowledge, etc.) I think that where we

> > are - is where we are.

> >

> > And I'm not sure how to come to terms with it. And move on. And stop

> > looking - LOOKING at my son's face, his eyes, his forehead. At some

> > point, he'll notice, and wonder why and what I'm looking at. And I

> > don't want to do that to him, ever - maybe it will never bother him.

> > So I don't want to plant a poison seed.

> >

> > I just feel RESPONSIBLE - and like I failed him. And I feel like

> > others failed him too. And HE has to live with our failings - because

> > it's had a physical effect - on his face. And it's painful.

> >

> > Thanks for reading.

> >

> >

>

[Guest guest]

Several weeks ago, I blogged about education. I was sent home from the hospital with a very thick envelope of education from the ped's office and there was nothing in there about plagio/brachy. I am a nurse of 21 years and a mother of 4 children and had never heard of this. (granted, the ages of my other children are 20, 15, and 10, and they all slept of their tummies) Trevor had his 6 month check up last week and his ped oohed and aahed over how good his head looked. I discussed the education issue with her and she promised she would personally find the proper info and give it to the "packet making lady" to include in all the packets for new parents. So, I kind of feel like I did my part in making sure other parents know about this so they do not have to go thru what we all

have had to do. , NC

From: estrellavila1 <estrellavila1@...>Plagiocephaly Sent: Sat, September 4, 2010 11:04:48 AMSubject: Re: Becoming peaceful -- continued.

Getting at peace with this is so hard to do. I was on the verge of that until we did swim lessons at 18 mo and it hit the fan. No one in the NICU told me about head shape and my original pediatrician did not say a thing. If I had known about all this stuff I would have been all over it but unfortunately it is too late. There needs to be more awareness and education amongst the pediatricians, I honestly feel like I am the specialist when I talk to my pediatrician about it and that should never be the case.I think the ultimate test will be when your child is an adult and they are ok with it. As mom's we are hypersensitive to everything about our children. I had an eating disorder in HS and it broke my mom's heart. Now I am over it and I know I will never be skinny. Maybe my son will be ok with his not perfect head. We can only hope and focus on the positive.> > > >> > Darn it - that sent before it was supposed to!> >> > I was going to go on to say this: I am trying to be peaceful with the > > asymmetry I can see now. But it is upsetting. It is not "in your face" > > - again - it's only visible from certain angles, in some photos (not > > all - in some photos you can't really tell at all), and in the mirror. > > Sometimes it jumps out at me and looks REALLY obvious - sometimes I > > look at him and almost can't see it.> >> > I try to tell myself - so what? So what, his eyes aren't perfectly > > symmetrical - they're a little off. Maybe it will get better. (Of > >

course my fear is it will get worse - there is no way to know as his > > facial bones grow and develop.)> >> > I am angry about his plagiocephaly - a condition that I feel was > > preventable IF I'D HAD THE RIGHT INFORMATION. I am also unimpressed > > with his orthotist - 2mm correction in 15 weeks? He grew more than > > that during that time, a lot more. So why the minimal correction? I > > question if his helmet ever really fit correctly (and we took him out > > of it because one of the sideburns was pressing into his face.) No one > > at the time suggested a second helmet (starband) was necessary, and so > > I never pursued it (and was in fact advised not to by his specialist.)> >> > I know I've done the best I can. I have investigated some alternative > > therapies locally - but so far have been unimpressed (with the

local > > providers, a general lack of knowledge, etc.) I think that where we > > are - is where we are.> >> > And I'm not sure how to come to terms with it. And move on. And stop > > looking - LOOKING at my son's face, his eyes, his forehead. At some > > point, he'll notice, and wonder why and what I'm looking at. And I > > don't want to do that to him, ever - maybe it will never bother him. > > So I don't want to plant a poison seed.> >> > I just feel RESPONSIBLE - and like I failed him. And I feel like > > others failed him too. And HE has to live with our failings - because > > it's had a physical effect - on his face. And it's painful.> >> > Thanks for reading.> >> >>