I'm new! Here is my story....

[Guest guest]

My son Evan will be 8 months old this weekend. He has been recently

diagnosed with positional plagiocephaly. I'm trying to learn as much

as I can and get as much support as I can. I want to tell you our

story but I'm not even sure where to start. I am sure much of it

will

sound familiar to many of you.

I've been concerned about the shape of Evan's head since he was about

2 months old. For the first 3-4 months of his life, his head always

fell to the right - playing on the floor, sleeping, in the car seat,

the swing, etc. We never realized that this could be a cause for

concern. Evan was able to turn his head to the left, he just really

seemed to prefer the right and we figured he'd grow out of it!

Eventually, he did - he now seems to have very normal movement and

control of his head and neck.

I should say before I go any further, that I am a huge worrier -

especially when it comes to health issues. My husband gets

frustrated

with me sometimes because he thinks I overreact to a lot of things.

So when I really started to get concerned about the shape of Evan's

head, my husband was not incredibly supportive. That hurt me

because

we have a great marriage, my husband is a wonderful father, and it

just disappointed me that he didn't seem concerned. In all fairness,

he wasn't the only one who was unsupportive. When I would mention

to

friends and family about Evan's " lopsided " head, everyone really

dismissed my concerns. Everyone told me his head would even out as

he

got bigger and that all babies have funny shaped heads. Their

" reassurances " did not make me feel better.

At Evan's 4-month check-up, I asked his pediatrician if she thought

his head looked unusual. When I asked the question, my husband

rolled

his eyes at me. The doctor didn't look at Evan's head very carefully

at all and she dismissed me by saying, " Oh, all babies have lopsided

heads. When he starts to hold his head up more, sit up, and crawl,

the shape will even out. " My husband was convinced, told me to stop

worrying - but I couldn't stop worrying.

At the 6-month check-up, our regular doctor was out and we saw

another

pediatrician. At that appointment, I did not ask about Evan's head

becuase I felt stupid. I am so angry at myself for not brining it up

then.

I probably don't need to describe Evan's head to you, but I will.

Flat spot on the back, right side. Right side of forehead bulges out

a bit, right ear is farther forward on his head than the left. Other

then the slight forhead bulge, his face looks totally normal. Seems

pretty typical of positional plagiocephaly from what I've seen and

read. Developmentally and neurologically, Evan seems just perfect.

And while those issues are out primary concern, the cosmetic issue is

also a very real concern for us. Although, most people don't even

notice what I'm talking about until I point out the ears, the bulge,

etc.

At 7 months, I brought Evan in to see his regular pediatrician again.

She immediately suggested we see a plastic surgeon at the Cleveland

Clinic (an hour away from us). She didn't really tell me what could

be wrong and I just started freaking out. I cried for about three

hours that afternoon and did make an appointment with the plastic

surgeon. About a week later, we met with another local pediatrician

(to whom we have now switched). He agreed that we should keep the

appointment with the plastic surgeon and he taked with us about

positional plagiocephaly and craniosynostosis.

Our appointment with the plastic surgeon was last week. Like our

pediatrician, the plastic surgeon is 99% sure that Evan has

positional

plagiocephaly. He does not really believe it could be synostosis but

wants to do a CT scan to be sure. He wants to treat Evan with a

cranial molding helmet.

We took the first avaialable CT can appointment which is still two

weeks away! That same day, the orthotics department at the Cleveland

Clinic will make a mold of Evan's head so the helmet can be made.

Orthotics told me it will take 2-3 weeks to get the helmet. By that

time, Evan will be 9 months old. I have put in a call to the plastic

surgeon to see if we can speed up this process. I'm becoming one of

those aggressive, pain-in-the-ass mothers and I don't care! This is

my child's health we are dealing with and nothing in the world is

more

important.

But it's all I can think about! I can't concentrate at work! Now

that the doctors are pretty sure they know what the problem is, I

just

want to start treating it now!

Has anyone out there started treatment this late? I'm so worried

that

it is too late to help Evan.

Also, do most people use helmets or headbands? I've found a lot more

info out there on the headbands.

Is anyone out there from Ohio? Did you go through the Cleveland

Clinic?

And what about this: I am also concerned that this started in utero.

I am a small woman (size 8, 5'4 " tall) and Evan was huge when he was

born! I had a very normal, healthy pregnancy and I gained 41 pounds!

When Evan was born, he was 22 1/4 " long and weighed 10 pounds, 10 1/2

ounces. No, I did not have a c-section and I delivered him without

an

epidural after 4+ hours of pushing. I'm worried that somehow I

caused

this to happen to Evan's head and the doctors won't really address my

questions regarding this.

I'll sign off now. Thanks for listening and reading all this! It

really helps to know there are other families out there experiencing

what we are. I look forward to hearing from folks.

Sharon

[Guest guest]

Sharon:

This sounds like our story...only the names have been changed!!

was a preemie and had tort and plagio caused in utero. He was

almost 7 months when I got fed up with my ped and went around him. We are

in Cleveland (east suburb). I directly called the Clinic and Rainbow (where

our sons were in the NICU) and both places led to Dr Papay at the Clinic (I

am sure that is who you saw). We met with him and had the same diagnosis as

you. The first Cat scan we could get was 6 weeks away and they wanted to

wait to start treatment. I was not happy waiting that long, and I had some

other concerns so I contacted Cranial Technologies. In the end, one week

later, we were being casted for the DOC band in the Chicago clinic.

started wearing the band at 7 1/2 months.

There are many children successfully treated in both helmets and bands. Much

is based on availability. The Clinic only treats babies up to one year of

age and would have been almost 9 months before we started

treatment. He was pretty severe and Dr Papay did not give me much

reassurance that his helmet would totally correct both his head shape and

his ears. I was told that was our only choice and we should go with it.

We chose to go with the band for many reasons. The DOC band uses active

pressure as well as allows for the normal growth of the head (the helmet

allows for the normal growth). Results are usually seen quicker and the

child can wear the band up to 2 years of age, thus allowing more time to

adjust. I had some issues with the non-responsiveness of the Clinic when I

had specific questions. The Clinic has been making bands for a number of

years and Dr Papay is well respected there (I checked with a number of

people.)

is now 11 months old and we have seem tremendous improvement. If

it stopped today I would be happy. We are going as long as possible and

expect to be in the band another month or so. The travel to Chicago is not

easy, but we manage to make it fun.

You are a wonderful mom. I understand the frustration with husbands who

just don't seem as worked up as we are. I have found that my husband is

just as concerned, but he doesn't vocalize it and he relies on me to work

out the details. I hope things get easier for you. Please feel free to

contact me directly at msluck@quixnet if I can be of more specific help.

Best of luck,

Sue

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

From: Sharon <srice@...>

<Plagiocephalyegroups>

Sent: Wednesday, July 19, 2000 3:10 PM

Subject: I'm new! Here is my story....

> My son Evan will be 8 months old this weekend. He has been recently

> diagnosed with positional plagiocephaly. I'm trying to learn as much

> as I can and get as much support as I can. I want to tell you our

> story but I'm not even sure where to start. I am sure much of it

> will

> sound familiar to many of you.

>

> I've been concerned about the shape of Evan's head since he was about

> 2 months old. For the first 3-4 months of his life, his head always

> fell to the right - playing on the floor, sleeping, in the car seat,

> the swing, etc. We never realized that this could be a cause for

> concern. Evan was able to turn his head to the left, he just really

> seemed to prefer the right and we figured he'd grow out of it!

> Eventually, he did - he now seems to have very normal movement and

> control of his head and neck.

>

> I should say before I go any further, that I am a huge worrier -

> especially when it comes to health issues. My husband gets

> frustrated

> with me sometimes because he thinks I overreact to a lot of things.

>

> So when I really started to get concerned about the shape of Evan's

> head, my husband was not incredibly supportive. That hurt me

> because

> we have a great marriage, my husband is a wonderful father, and it

> just disappointed me that he didn't seem concerned. In all fairness,

> he wasn't the only one who was unsupportive. When I would mention

> to

> friends and family about Evan's " lopsided " head, everyone really

> dismissed my concerns. Everyone told me his head would even out as

> he

> got bigger and that all babies have funny shaped heads. Their

> " reassurances " did not make me feel better.

>

> At Evan's 4-month check-up, I asked his pediatrician if she thought

> his head looked unusual. When I asked the question, my husband

> rolled

> his eyes at me. The doctor didn't look at Evan's head very carefully

> at all and she dismissed me by saying, " Oh, all babies have lopsided

> heads. When he starts to hold his head up more, sit up, and crawl,

> the shape will even out. " My husband was convinced, told me to stop

> worrying - but I couldn't stop worrying.

>

> At the 6-month check-up, our regular doctor was out and we saw

> another

> pediatrician. At that appointment, I did not ask about Evan's head

> becuase I felt stupid. I am so angry at myself for not brining it up

> then.

>

> I probably don't need to describe Evan's head to you, but I will.

> Flat spot on the back, right side. Right side of forehead bulges out

> a bit, right ear is farther forward on his head than the left. Other

> then the slight forhead bulge, his face looks totally normal. Seems

> pretty typical of positional plagiocephaly from what I've seen and

> read. Developmentally and neurologically, Evan seems just perfect.

> And while those issues are out primary concern, the cosmetic issue is

> also a very real concern for us. Although, most people don't even

> notice what I'm talking about until I point out the ears, the bulge,

> etc.

>

> At 7 months, I brought Evan in to see his regular pediatrician again.

>

> She immediately suggested we see a plastic surgeon at the Cleveland

> Clinic (an hour away from us). She didn't really tell me what could

> be wrong and I just started freaking out. I cried for about three

> hours that afternoon and did make an appointment with the plastic

> surgeon. About a week later, we met with another local pediatrician

> (to whom we have now switched). He agreed that we should keep the

> appointment with the plastic surgeon and he taked with us about

> positional plagiocephaly and craniosynostosis.

>

> Our appointment with the plastic surgeon was last week. Like our

> pediatrician, the plastic surgeon is 99% sure that Evan has

> positional

> plagiocephaly. He does not really believe it could be synostosis but

> wants to do a CT scan to be sure. He wants to treat Evan with a

> cranial molding helmet.

>

> We took the first avaialable CT can appointment which is still two

> weeks away! That same day, the orthotics department at the Cleveland

> Clinic will make a mold of Evan's head so the helmet can be made.

> Orthotics told me it will take 2-3 weeks to get the helmet. By that

> time, Evan will be 9 months old. I have put in a call to the plastic

> surgeon to see if we can speed up this process. I'm becoming one of

> those aggressive, pain-in-the-ass mothers and I don't care! This is

> my child's health we are dealing with and nothing in the world is

> more

> important.

>

> But it's all I can think about! I can't concentrate at work! Now

> that the doctors are pretty sure they know what the problem is, I

> just

> want to start treating it now!

>

> Has anyone out there started treatment this late? I'm so worried

> that

> it is too late to help Evan.

>

> Also, do most people use helmets or headbands? I've found a lot more

> info out there on the headbands.

>

> Is anyone out there from Ohio? Did you go through the Cleveland

> Clinic?

>

> And what about this: I am also concerned that this started in utero.

>

> I am a small woman (size 8, 5'4 " tall) and Evan was huge when he was

> born! I had a very normal, healthy pregnancy and I gained 41 pounds!

>

> When Evan was born, he was 22 1/4 " long and weighed 10 pounds, 10 1/2

> ounces. No, I did not have a c-section and I delivered him without

> an

> epidural after 4+ hours of pushing. I'm worried that somehow I

> caused

> this to happen to Evan's head and the doctors won't really address my

> questions regarding this.

>

> I'll sign off now. Thanks for listening and reading all this! It

> really helps to know there are other families out there experiencing

> what we are. I look forward to hearing from folks.

> Sharon

>

>

>

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

> Best friends, most artistic, class clown Find 'em here:

> 1/7078/5/_/689409/_/964033848/

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

>

>

[Guest guest]

"I'm worried that somehow I

caused

this to happen to Evan's head ......"

Sharon:

Please don't feel guilty!!! We all go thru that stage, but please

try to let it go.

I am not a small woman. I am 5'9", and well, bigger than size

8!!! ) My daughter wasn't exactly small, but not huge (8 lbs, 6

oz). Everyone commented to me about how early I "dropped".

I had an ultrasound at about 32 weeks, and they could not measure Hanna's

head, she was down too low. When she was born, even her nose was

squished!

You can't blame yourself! That's nature ~ completely beyond your

control. Just be happy that it's something that you can fix, and

that he is otherwise a happy, healthy child.

I'm glad you found us. Welcome to the group!

Kendra

Sharon wrote:

My son Evan will be 8 months old this weekend.

He has been recently

diagnosed with positional plagiocephaly. I'm trying to learn

as much

as I can and get as much support as I can. I want to tell

you our

story but I'm not even sure where to start. I am sure much

of it

will

sound familiar to many of you.

I've been concerned about the shape of Evan's head since he was

about

2 months old. For the first 3-4 months of his life, his head

always

fell to the right - playing on the floor, sleeping, in the car

seat,

the swing, etc. We never realized that this could be a cause for

concern. Evan was able to turn his head to the left, he just

really

seemed to prefer the right and we figured he'd grow out of it!

Eventually, he did - he now seems to have very normal movement

and

control of his head and neck.

I should say before I go any further, that I am a huge worrier -

especially when it comes to health issues. My husband gets

frustrated

with me sometimes because he thinks I overreact to a lot of things.

So when I really started to get concerned about the shape of Evan's

head, my husband was not incredibly supportive. That hurt

me

because

we have a great marriage, my husband is a wonderful father, and

it

just disappointed me that he didn't seem concerned. In all

fairness,

he wasn't the only one who was unsupportive. When I

would mention

to

friends and family about Evan's "lopsided" head, everyone

really

dismissed my concerns. Everyone told me his head would even

out as

he

got bigger and that all babies have funny shaped heads. Their

"reassurances" did not make me feel better.

At Evan's 4-month check-up, I asked his pediatrician if she thought

his head looked unusual. When I asked the question, my husband

rolled

his eyes at me. The doctor didn't look at Evan's head very

carefully

at all and she dismissed me by saying, "Oh, all babies have lopsided

heads. When he starts to hold his head up more, sit up, and

crawl,

the shape will even out." My husband was convinced, told

me to stop

worrying - but I couldn't stop worrying.

At the 6-month check-up, our regular doctor was out and we saw

another

pediatrician. At that appointment, I did not ask about Evan's

head

becuase I felt stupid. I am so angry at myself for not brining

it up

then.

I probably don't need to describe Evan's head to you, but I will.

Flat spot on the back, right side. Right side of forehead

bulges out

a bit, right ear is farther forward on his head than the left.

Other

then the slight forhead bulge, his face looks totally normal. Seems

pretty typical of positional plagiocephaly from what I've seen

and

read. Developmentally and neurologically, Evan seems just

perfect.

And while those issues are out primary concern, the cosmetic issue

is

also a very real concern for us. Although, most people don't

even

notice what I'm talking about until I point out the ears, the bulge,

etc.

At 7 months, I brought Evan in to see his regular pediatrician again.

She immediately suggested we see a plastic surgeon at the Cleveland

Clinic (an hour away from us). She didn't really tell me

what could

be wrong and I just started freaking out. I cried for about

three

hours that afternoon and did make an appointment with the plastic

surgeon. About a week later, we met with another local pediatrician

(to whom we have now switched). He agreed that we should

keep the

appointment with the plastic surgeon and he taked with us about

positional plagiocephaly and craniosynostosis.

Our appointment with the plastic surgeon was last week. Like

our

pediatrician, the plastic surgeon is 99% sure that Evan has

positional

plagiocephaly. He does not really believe it could be synostosis

but

wants to do a CT scan to be sure. He wants to treat Evan

with a

cranial molding helmet.

We took the first avaialable CT can appointment which is still two

weeks away! That same day, the orthotics department at the

Cleveland

Clinic will make a mold of Evan's head so the helmet can be made.

Orthotics told me it will take 2-3 weeks to get the helmet.

By that

time, Evan will be 9 months old. I have put in a call to

the plastic

surgeon to see if we can speed up this process. I'm becoming

one of

those aggressive, pain-in-the-ass mothers and I don't care!

This is

my child's health we are dealing with and nothing in the world

is

more

important.

But it's all I can think about! I can't concentrate at work!

Now

that the doctors are pretty sure they know what the problem is,

I

just

want to start treating it now!

Has anyone out there started treatment this late? I'm so worried

that

it is too late to help Evan.

Also, do most people use helmets or headbands? I've found

a lot more

info out there on the headbands.

Is anyone out there from Ohio? Did you go through the Cleveland

Clinic?

And what about this: I am also concerned that this started

in utero.

I am a small woman (size 8, 5'4" tall) and Evan was huge when he

was

born! I had a very normal, healthy pregnancy and I gained

41 pounds!

When Evan was born, he was 22 1/4" long and weighed 10 pounds, 10

1/2

ounces. No, I did not have a c-section and I delivered him

without

an

epidural after 4+ hours of pushing. I'm worried that somehow

I

caused

this to happen to Evan's head and the doctors won't really address

my

questions regarding this.

I'll sign off now. Thanks for listening and reading all this!

It

really helps to know there are other families out there experiencing

what we are. I look forward to hearing from folks.

Sharon

[Guest guest]

Sharon:

Welcome :-). I know alot of babies in this group started treatment late,

I'm sure some of them will respond to your message. My son started a

few days after he turned 5 months so I don't have much advice to offer

on that subject. Your son sounds like the classic plagio case. My son

too has the back right side very flat, ears misaligned, right forehead

slightly bulged and facial asymmetry. He is considered on the high end

of moderate to severe. We have been in our band for almost 3 weeks now

and are seeing excellent improvement already. We only take it off once

at night to clean it, wash hair, and for his pt. I hope the fact that we

have already seen great improvement will give you some encouragement.

You sound like me, I was very pushy about getting my son's band. From

the day our Pedi referred us to the day he got his band was only 4

weeks, that includes the insurance approval. I checked on everyone to

make sure they were all doing there job. When it comes to my kids,

noone better get in my way. Good Luck and keep us posted.

Sherri