Please Help !

[Guest guest]

Hello everyone ! Please bear with me, I just found this site and all

the information is SO overwhelming - I just don't know where to

start.

My daughter is now 17 weeks old and is a twin. At 2 months I

noticed that the back of her head was really flat. (actually when you

put her on her stomach, you could serve drinks on it) She also has

a " point " off to the left upper side. Everyone started noticing it

and my Mother got me all upset and told me she thought she had Down's

Syndrome or something. She has always slept flat on her back and so

we tried getting her to sleep on her side, but it won't work.

Anyway, at her 4 month check -up the Dr. said she was perfectly fine

and normal (head growing well). Then she said to just rub her head,

stretch her neck (her neck muscles are pretty loose and don't pull or

anything), and help her sit up with a Boppy or walker or something

and her head would go back to normal. if not - well, she has a lot of

hair.

Well, I'm terrified. Her head doesn't seem to be changing, and we

CANNOT get her to sleep on her side. She always finds a way onto her

back. A friend referred me to this group because I'm so worried

about her abnormal head and her Dr. doesn't take me seriously.

I gather from all the postings that this has been discussed

millions of times, but it's new to me and I have no information to go

on. I can't even figure out where to start going through all the

postings here. Would some kind person help me out here ? What's

going on with my daughter ? Is she normal ? Can she get better or is

it hopeless ?

Any response would be appreciated, Sincerely

[Guest guest]

OK, ..... deep breath!

It's all so overwhelming at first!

First of all, your daughter is just fine! Was she twin A?

It is very common for "A" baby to get squished by "B".

Second... Get a new doctor! If nothing else, have your doctor

refer you to a neurosurgeon or craniofacial specialist. You need

to talk to someone who is familiar with this condition. You are approaching

the "timeline" in which re-positioning your daughter is no longer effective.

While babies are very young, re-positioning sometimes works to round out

the head (we positioned for 4 months from 1.5 months on with no success).

They may want to do some x-rays or a CAT scan to rule out craniosynostosis,

but many doctors feel comfortable diagnosing without these tests.

A helmet or band will probably be prescribed. If your doctor still

tells you it's nothing to worry about, get yet, another opinion - unless

of course you feel it is not severe enough to treat.

Unfortunately, many doctors are still very uneducated on this topic.

I hope this helps you a little. Again, I know it's so much to

take in at once.

Kendra

aschton@... wrote:

Hello everyone ! Please bear with me, I

just found this site and all

the information is SO overwhelming - I just don't know where to

start.

My daughter is now 17 weeks old and is a twin. At

2 months I

noticed that the back of her head was really flat. (actually when

you

put her on her stomach, you could serve drinks on it) She

also has

a "point" off to the left upper side. Everyone started noticing

it

and my Mother got me all upset and told me she thought she had

Down's

Syndrome or something. She has always slept flat on her back

and so

we tried getting her to sleep on her side, but it won't work.

Anyway, at her 4 month check -up the Dr. said she was perfectly

fine

and normal (head growing well). Then she said to just rub her head,

stretch her neck (her neck muscles are pretty loose and don't pull

or

anything), and help her sit up with a Boppy or walker or something

and her head would go back to normal. if not - well, she has a

lot of

hair.

Well, I'm terrified. Her head doesn't seem to be changing,

and we

CANNOT get her to sleep on her side. She always finds a way onto

her

back. A friend referred me to this group because I'm so worried

about her abnormal head and her Dr. doesn't take me seriously.

I gather from all the postings that this has been discussed

millions of times, but it's new to me and I have no information

to go

on. I can't even figure out where to start going through all the

postings here. Would some kind person help me out here ?

What's

going on with my daughter ? Is she normal ? Can she get better

or is

it hopeless ?

Any response would be appreciated, Sincerely

[Guest guest]

Thank you for responding, Kendra.

After I posted my message I got to looking around at some of the

picture files and wow ! Kailey's face and head look so much like the

other babies. I started to cry. Up until then I hadn't really been

sure that I wasn't overthinking the whole thing and was in the wrong

place. Her heads not just flat, her ears are lopsided (pretty badly)

and her mouth, nose, and chin are off balance.

You know it's almost funny - Ever since she was born (She was Twin

A) people have said " She's the bigger baby " and my response has

always been the same " No, she's actually smaller and weighs less,

she just has a much bigger head than he does " . I never realized that

it was significant.

I'm going to call around today and see if I can find a specialist

that's enrolled with my insurance. I don't know, though because we

are a military family living in South Georgia. Maybe I'll get lucky.

Thanks again ! God Bless !

>

> > Hello everyone ! Please bear with me, I just found this site and

all

> > the information is SO overwhelming - I just don't know where to

> > start.

> > My daughter is now 17 weeks old and is a twin. At 2 months I

> > noticed that the back of her head was really flat. (actually when

you

> > put her on her stomach, you could serve drinks on it) She also

has

> > a " point " off to the left upper side. Everyone started noticing

it

> > and my Mother got me all upset and told me she thought she had

Down's

> > Syndrome or something. She has always slept flat on her back and

so

> > we tried getting her to sleep on her side, but it won't work.

> > Anyway, at her 4 month check -up the Dr. said she was perfectly

fine

> > and normal (head growing well). Then she said to just rub her

head,

> > stretch her neck (her neck muscles are pretty loose and don't

pull or

> > anything), and help her sit up with a Boppy or walker or something

> > and her head would go back to normal. if not - well, she has a

lot of

> > hair.

> > Well, I'm terrified. Her head doesn't seem to be changing, and

we

> > CANNOT get her to sleep on her side. She always finds a way onto

her

> > back. A friend referred me to this group because I'm so worried

> > about her abnormal head and her Dr. doesn't take me seriously.

> > I gather from all the postings that this has been discussed

> > millions of times, but it's new to me and I have no information

to go

> > on. I can't even figure out where to start going through all the

> > postings here. Would some kind person help me out here ? What's

> > going on with my daughter ? Is she normal ? Can she get better

or is

> > it hopeless ?

> >

> > Any response would be appreciated, Sincerely

> >

> >

> >

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

-----

> >

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

-----

> >

[Guest guest]

if you're that concerned about it go directly to a neuro or plastic surgeon.

don't wait as helmets/bands are how this is treated and work best on younger

children. Remember w/ thre positioning that belly time is best while awake,

keep baby of floor and other hard surfaces on that spot and this includes

the car seat. You can use foam to keep her off the flat area in the car

seat. - Liz

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

From: aschton@... <aschton@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Monday, May 15, 2000 9:48 PM

Subject: Please Help !

>Hello everyone ! Please bear with me, I just found this site and all

>the information is SO overwhelming - I just don't know where to

>start.

> My daughter is now 17 weeks old and is a twin. At 2 months I

>noticed that the back of her head was really flat. (actually when you

>put her on her stomach, you could serve drinks on it) She also has

>a " point " off to the left upper side. Everyone started noticing it

>and my Mother got me all upset and told me she thought she had Down's

>Syndrome or something. She has always slept flat on her back and so

>we tried getting her to sleep on her side, but it won't work.

>Anyway, at her 4 month check -up the Dr. said she was perfectly fine

>and normal (head growing well). Then she said to just rub her head,

>stretch her neck (her neck muscles are pretty loose and don't pull or

>anything), and help her sit up with a Boppy or walker or something

>and her head would go back to normal. if not - well, she has a lot of

>hair.

> Well, I'm terrified. Her head doesn't seem to be changing, and we

>CANNOT get her to sleep on her side. She always finds a way onto her

>back. A friend referred me to this group because I'm so worried

>about her abnormal head and her Dr. doesn't take me seriously.

> I gather from all the postings that this has been discussed

>millions of times, but it's new to me and I have no information to go

>on. I can't even figure out where to start going through all the

>postings here. Would some kind person help me out here ? What's

>going on with my daughter ? Is she normal ? Can she get better or is

>it hopeless ?

>

>Any response would be appreciated, Sincerely

>

>

>

>

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

>Failed tests, classes skipped, forgotten locker combinations.

>Remember the good 'ol days

>1/4053/4/_/689409/_/958452765/

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

>

>

[Guest guest]

Don't worry . There has got to be someone out there who can

help you. Even if they don't know anything about plagio. (my ped.

didn't), take hand fulls of info. from the internet. The Cranial

Tech. site has tons. Even just their Q & A sheet would be informative.

Also check the "links" section. There are links to many different

articles.

Ask your doctor to track down a specialist for you. They have

the inside track. Don't let them tell you to forget about it. Be

nice, but PUSH, PUSH, PUSH!

It really is very sad that so many doctors don't have a clue about this

condition.

Good luck with your search!

Kendra

aschton@... wrote:

Thank you for responding, Kendra.

After I posted my message I got to looking around at some of the

picture files and wow ! Kailey's face and head look so much

like the

other babies. I started to cry. Up until then I hadn't really been

sure that I wasn't overthinking the whole thing and was in the

wrong

place. Her heads not just flat, her ears are lopsided (pretty badly)

and her mouth, nose, and chin are off balance.

You know it's almost funny - Ever since she was born (She

was Twin

A) people have said "She's the bigger baby " and my response has

always been the same " No, she's actually smaller and weighs less,

she just has a much bigger head than he does". I never realized

that

it was significant.

I'm going to call around today and see if I can find a specialist

that's enrolled with my insurance. I don't know, though because

we

are a military family living in South Georgia. Maybe I'll

get lucky.

Thanks again ! God Bless !

>

> > Hello everyone ! Please bear with me, I just found this

site and

all

> > the information is SO overwhelming - I just don't know where

to

> > start.

> > My daughter is now 17 weeks old and is a twin.

At 2 months I

> > noticed that the back of her head was really flat. (actually

when

you

> > put her on her stomach, you could serve drinks on it)

She also

has

> > a "point" off to the left upper side. Everyone started

noticing

it

> > and my Mother got me all upset and told me she thought she

had

Down's

> > Syndrome or something. She has always slept flat on her

back and

so

> > we tried getting her to sleep on her side, but it won't work.

> > Anyway, at her 4 month check -up the Dr. said she was perfectly

fine

> > and normal (head growing well). Then she said to just rub her

head,

> > stretch her neck (her neck muscles are pretty loose and don't

pull or

> > anything), and help her sit up with a Boppy or walker or something

> > and her head would go back to normal. if not - well, she has

a

lot of

> > hair.

> > Well, I'm terrified. Her head doesn't seem to be

changing, and

we

> > CANNOT get her to sleep on her side. She always finds a way

onto

her

> > back. A friend referred me to this group because I'm

so worried

> > about her abnormal head and her Dr. doesn't take me seriously.

> > I gather from all the postings that this has been

discussed

> > millions of times, but it's new to me and I have no information

to go

> > on. I can't even figure out where to start going through all

the

> > postings here. Would some kind person help me out here

? What's

> > going on with my daughter ? Is she normal ? Can she get

better

or is

> > it hopeless ?

> >

> > Any response would be appreciated, Sincerely

> >

> >

> >

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

-----

> >

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

-----

> >

[Guest guest]

Thank You, Kendra. For all the encouragement and info. I have good

news - I think. I ckecked outthe plagiocephaly web site and one the

Dr.'s there was a Dr. Ann Flannery at the Georgia Med. College. Well,

its' about 3 hrs away, but she's one of our insurance providers. So,

I called and Kailey has an appointment to be evaluated on the 30 th.

She was really encouraging and said that Kay will be at a great age

for evaluation (5 mos). Is that about what you have heard ?

I'm nervous , but relieved at the same time. Our Ped. wasn't in

today, but I told her nurse just to get me the referral. She's aware

of the situation anyway, and If she thinks I'm nuts - So What ? it's

just a second opinion and I'm a new MOM anyway.

Since you have been doing this awhile - have you heard anything

about this Dr. Flannery ? Her secretary says she's an expert in this

field and she IS all over these websites . Got an opinion ?

I'm bubbling over here, I'm so relieved that someone might can help

my Kay-bunny. She's such a beautiful baby and has such a sweet

disposition (providing you never, ever try to put her on her side or

tummy - she screams 'til she throws up !). This should prove to be

an interesting journey, after all. Anyway, If it wasn't for this

message board and you - I don't think I would have called. Thanks so

much !

Take Care,

> > >

> > > > Hello everyone ! Please bear with me, I just found this site

and

> > all

> > > > the information is SO overwhelming - I just don't know where

to

> > > > start.

> > > > My daughter is now 17 weeks old and is a twin. At 2 months

I

> > > > noticed that the back of her head was really flat. (actually

when

> > you

> > > > put her on her stomach, you could serve drinks on it) She

also

> > has

> > > > a " point " off to the left upper side. Everyone started

noticing

> > it

> > > > and my Mother got me all upset and told me she thought she had

> > Down's

> > > > Syndrome or something. She has always slept flat on her back

and

> > so

> > > > we tried getting her to sleep on her side, but it won't work.

> > > > Anyway, at her 4 month check -up the Dr. said she was

perfectly

> > fine

> > > > and normal (head growing well). Then she said to just rub her

> > head,

> > > > stretch her neck (her neck muscles are pretty loose and don't

> > pull or

> > > > anything), and help her sit up with a Boppy or walker or

something

> >

> > > > and her head would go back to normal. if not - well, she has a

> > lot of

> > > > hair.

> > > > Well, I'm terrified. Her head doesn't seem to be changing,

and

> > we

> > > > CANNOT get her to sleep on her side. She always finds a way

onto

> > her

> > > > back. A friend referred me to this group because I'm so

worried

> > > > about her abnormal head and her Dr. doesn't take me seriously.

> > > > I gather from all the postings that this has been discussed

> > > > millions of times, but it's new to me and I have no

information

> > to go

> > > > on. I can't even figure out where to start going through all

the

> > > > postings here. Would some kind person help me out here ?

What's

> > > > going on with my daughter ? Is she normal ? Can she get

better

> > or is

> > > > it hopeless ?

> > > >

> > > > Any response would be appreciated, Sincerely

> > > >

> > > >

> > > >

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

----

> >

> > -----

> > > >

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

----

> >

> > -----

> > > >

[Guest guest]

Hi !

I'm so glad you found someone! I don't know of this doctor as

I am in Canada. I can't say if she's good or bad, but knowing she's

an expert in the field is a bonus!! ...... I just popped into the Cranial

Tech website and they have her listed on their board of clinic locations.

I'm sure you'll be in great hands!!

Yes! 5 months is the perfect time to get started! The earlier

the better, but I don't think they treat babies before 3 months.

Hanna was 6 months, 3 days when she got her band. She was a little

cranky at the appointment, but didn't even flinch as far as wearing the

band goes. She slept right thru the first night.

I do encourage you to go thru the files section. Find some pictures

of the casting process. This is the worst part of the treatment.

It is not at all painful to the babies, but they do tend to cry.

It takes a total of about 10 minutes, and is generally heart-wrenching

on mom. In Hanna's case, she cried straight thru the casting, but

as soon as they popped it off she stopped. She just wanted to see

what the heck that thing was!!! It was all laughs and smiles after

that. She had a 3 hour nap afterwards, starting the second her butt

hit the car seat! As long as you go in knowing what to expect, you'll

be fine.

Well, I'll go. I'm glad I (we) could be here for you. Keep

the questions coming!!!

Kendra

aschton@... wrote:

Thank You, Kendra. For all the encouragement

and info. I have good

news - I think. I ckecked outthe plagiocephaly web site and

one the

Dr.'s there was a Dr. Ann Flannery at the Georgia Med. College.

Well,

its' about 3 hrs away, but she's one of our insurance providers.

So,

I called and Kailey has an appointment to be evaluated on the 30

th.

She was really encouraging and said that Kay will be at a great

age

for evaluation (5 mos). Is that about what you have heard ?

I'm nervous , but relieved at the same time. Our Ped. wasn't in

today, but I told her nurse just to get me the referral. She's

aware

of the situation anyway, and If she thinks I'm nuts - So What ?

it's

just a second opinion and I'm a new MOM anyway.

Since you have been doing this awhile - have you heard anything

about this Dr. Flannery ? Her secretary says she's an expert

in this

field and she IS all over these websites . Got an opinion ?

I'm bubbling over here, I'm so relieved that someone might can

help

my Kay-bunny. She's such a beautiful baby and has such a sweet

disposition (providing you never, ever try to put her on her side

or

tummy - she screams 'til she throws up !). This should prove

to be

an interesting journey, after all. Anyway, If it wasn't for

this

message board and you - I don't think I would have called. Thanks

so

much !

Take Care,

> > >

> > > > Hello everyone ! Please bear with me, I just found

this site

and

> > all

> > > > the information is SO overwhelming - I just don't know

where

to

> > > > start.

> > > > My daughter is now 17 weeks old and is a twin.

At 2 months

I

> > > > noticed that the back of her head was really flat. (actually

when

> > you

> > > > put her on her stomach, you could serve drinks on it)

She

also

> > has

> > > > a "point" off to the left upper side. Everyone started

noticing

> > it

> > > > and my Mother got me all upset and told me she thought

she had

> > Down's

> > > > Syndrome or something. She has always slept flat

on her back

and

> > so

> > > > we tried getting her to sleep on her side, but it won't

work.

> > > > Anyway, at her 4 month check -up the Dr. said she was

perfectly

> > fine

> > > > and normal (head growing well). Then she said to just rub

her

> > head,

> > > > stretch her neck (her neck muscles are pretty loose and

don't

> > pull or

> > > > anything), and help her sit up with a Boppy or walker or

something

> >

> > > > and her head would go back to normal. if not - well, she

has a

> > lot of

> > > > hair.

> > > > Well, I'm terrified. Her head doesn't seem

to be changing,

and

> > we

> > > > CANNOT get her to sleep on her side. She always finds a

way

onto

> > her

> > > > back. A friend referred me to this group because

I'm so

worried

> > > > about her abnormal head and her Dr. doesn't take me seriously.

> > > > I gather from all the postings that this has

been discussed

> > > > millions of times, but it's new to me and I have no

information

> > to go

> > > > on. I can't even figure out where to start going through

all

the

> > > > postings here. Would some kind person help me out

here ?

What's

> > > > going on with my daughter ? Is she normal ? Can she

get

better

> > or is

> > > > it hopeless ?

> > > >

> > > > Any response would be appreciated, Sincerely

> > > >

> > > >

> > > >

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

----

> >

> > -----

> > > >

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

----

> >

> > -----

> > > >

[Guest guest]

michelle,have you tried one of those side sleeper things made for newborns?i

saw one at babys r us when i was shopping for a baby shower present lately

and it looks like it might be worth looking into.maybe at babycenter.com?

lynne and livie.

[Guest guest]

In a message dated 5/15/00 9:53:51 PM Pacific Daylight Time,

aschton@... writes:

<< Is she normal ? Can she get better or is

it hopeless ?

>>

-she is probably normal now, but when she is 16 & wearing black

lipstick, let's revisit that question:)! As for getting better...most of the

parents here have not been successful with re-positioning or pt alone. The

doc band & helmet therapy have been a blessing for helping our babies. So,

yes, she can get better:)!!!!! The trick is to find a dr familiar with these

options, and also one that does not believe that this is a cometic issue or

that " it will get better on its own " (boy if had a nickle for every

time she's heard that story...) A starting point might be reading Cranial

Technologies website, their FAQ section is good. It is hard to find helmet

info as they vary by manufacturer. Also the CT site has a list of drs they

work with, check out to see of your state is included. Kimry

[Guest guest]

In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

kbgarv@... writes:

<< First of all, your daughter is just fine! Was she twin A? It is very

common for " A " baby to get squished by " B " .

>>

Funny story...tonite our 6 yr old was asking about twins & how are they in

the tummy. My hubby automatically replied that they are side by side. I

reflex action said " no, sometimes they are on top of each other & twin A gets

squished on the bottom. " I don't have twins, but I have at least learned

that much about twins from reading these posts:) Kimry

Also on a funny note...did anyone else hear that breast inplants are now FDA

approved. HUMMMMM, maybe that is why the helmet FDA approval is back logged,

they were workin on the implant thing!!!!!!!!!!

[Guest guest]

In a message dated 5/16/00 12:27:09 PM Pacific Daylight Time,

aschton@... writes:

<< So,

I called and Kailey has an appointment to be evaluated on the 30 th.

She was really encouraging and said that Kay will be at a great age

for evaluation (5 mos). Is that about what you have heard ?

>>

-yes, Kay is at a great age to start this process, yay for you! Kimry

[Guest guest]

Hi Lynne ! Thanks for responding.

My mother bought both of the babies one of the side sleeper things,

but when they were newborns they would only sleep in their car seats.

They were a month old when we finally broke that habit, but then

Kailey would turn over on her back and Colby would only sleep on his

tummy.

We tried using the side sleeper then , but she would wake up after a

few minutes and scream and scream until she got sick. After a few

days she figured out how to maneuver herself onto her back. so THEN,

we tried padding her on both sides of her bassinet (with the side

sleeper as well), We would wedge her in there pretty good and still

come morning she would be flat on her back with her feet propped up.

That's a thing with her too, The feet propped up and always sticking

out of her blankets.

Anyway, I've run out of solutions, but thanks for trying to help !:-

)

-

-- In Plagiocephalyegroups, DOLY1023@a... wrote:

> michelle,have you tried one of those side sleeper things made for

newborns?i

> saw one at babys r us when i was shopping for a baby shower present

lately

> and it looks like it might be worth looking into.maybe at

babycenter.com?

> lynne and livie.

[Guest guest]

Implants FDA approved!!?? Set me up baby!

Kendra

AAKARA@... wrote:

In a message dated 5/15/00 10:30:56 PM Pacific

Daylight Time,

kbgarv@... writes:

<< First of all, your daughter is just fine! Was she

twin A? It is very

common for "A" baby to get squished by "B".

>>

Funny story...tonite our 6 yr old was asking about twins &

how are they in

the tummy. My hubby automatically replied that they are side

by side. I

reflex action said "no, sometimes they are on top of each other

& twin A gets

squished on the bottom." I don't have twins, but I have at

least learned

that much about twins from reading these posts:) Kimry

Also on a funny note...did anyone else hear that breast inplants

are now FDA

approved. HUMMMMM, maybe that is why the helmet FDA approval

is back logged,

they were workin on the implant thing!!!!!!!!!!

[Guest guest]

In a message dated 5/16/00 10:41:19 PM Pacific Daylight Time,

kbgarv@... writes:

<< Implants FDA approved!!?? Set me up baby!

Kendra >>

we can go together...after 4 kids in 7 years, I can definetely use some help

ha, ha! Kimry

[Guest guest]

Implants, huh ? You guys are too funny ! Thank God I needed a

smile.

I came back to this page, today not just to check the posts but to

get some facts- Kailey's Peds. nurse called me back about wanting the

referral and it looks like I'm in for a fight. She said our Doc.

looked up Plagio. and said that it was about her sutures being fused

together prematurally and was only correctable with surgery and she

didn't think Kay needed surgery, but she wants x-rays done first and

then she would decide if Kay could have a referral. I told her " No " .

I wasn't trying to get Kay evaluated for surgery and we already know

her sutures aren't closed and this is a good thing. that this Doc.

would try to help Kay Before she needed surgery and that I already

had Dr.-----------opinion and I just wanted a second one. She goes "

So you don't want X-rays ? " AAAAAAAAAAGGGGGGGGHHHHHHHH!!!!!!!!!!!!!!!

(Yes, I'm a horrible parent who thinks it just might be fun to watch

my baby go through that more than once) Anyway, she said she would

talk to our Doc. again and call me back.

I'm getting ready now, to be full of information when she calls

back. Is it like this for everyone ? (I sense that it is ) Why ? and

where do they get their information ? I only went to

Plagiocephely.org and found tons of information and none of it

suggested that plagio was about premature closure of the sutures ,

actually I'm pretty sure that condition had another name.

Well, wish us luck - I don't want to have to pay for her consult out

of pocket, but I will if I have to.

-- In Plagiocephalyegroups, & Kendra <kbgarv@t...> wrote:

> Implants FDA approved!!?? Set me up baby!

> Kendra

>

> AAKARA@a... wrote:

>

> > In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

> > kbgarv@t... writes:

> >

> > << First of all, your daughter is just fine! Was she twin A? It

is

> > very

> > common for " A " baby to get squished by " B " .

> > >>

> > Funny story...tonite our 6 yr old was asking about twins & how are

> > they in

> > the tummy. My hubby automatically replied that they are side by

> > side. I

> > reflex action said " no, sometimes they are on top of each other &

twin

> > A gets

> > squished on the bottom. " I don't have twins, but I have at least

> > learned

> > that much about twins from reading these posts:) Kimry

> > Also on a funny note...did anyone else hear that breast inplants

are

> > now FDA

> > approved. HUMMMMM, maybe that is why the helmet FDA approval is

back

> > logged,

> > they were workin on the implant thing!!!!!!!!!!

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

-----

> >

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

-----

> >

[Guest guest]

-

That is a funny story. Not only was Kailey crossways on the bottom,

but we had an ultrasound every 2 weeks from 7 weeks on, and at every

one her Brother (who was horizontal on top)would be kicking her in

the head ! we'd watch and every few seconds he'd kick his feet out

towards her head and she'd move at impact.

It wasn't until I was 32 weeks that they went into the side by side

position (head down). Unfortunately for Kailey -the tech told us her

head was already too far down in my pelvis to even be measured (they

could no longer see all of it)- I didn't deliver her until 37 weeks

+. My poor baby -her punkin' head was squished down in there all

that time.( 5 weeks)

After she was born, she screamed and screamed for so long that they

put her in the swing in the nursery when she was only 3 hours old.

She kept this up for about 3 weeks, and it's ironic now, but my MOm

kept saying she thought Kailey was screaming so much because her head

hurt. In retrospect , I believe she was right. Kailey's head looked

really bad then and if you so much as touched it - she'd scream like

she'd been burnt or something. This was also bad because she was

born with a ton of hair and we had to wash it.

Now, though , Kay is SO laid back. She never cries unless she's

hungry, she smiles from the time she wakes up @ 10 am until she goes

to bed @9. She's totally content to just be left to entertain

herself. If you knew her now, you'd never believe that all the nurses

kept telling us that she was a " bad " baby and she was labeled

the " terror of the nursery " .

Anyway, I'm sorry I'm rambling and you now know Kay's life story.

Your comment about twins got me to remembering and now I really DO

wonder if I hurt my daughter by not paying more attention back then.

We probably could have helped her more.

well, take care

-- In Plagiocephalyegroups, AAKARA@a... wrote:

> In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

> kbgarv@t... writes:

>

> << First of all, your daughter is just fine! Was she twin A? It

is very

> common for " A " baby to get squished by " B " .

> >>

> Funny story...tonite our 6 yr old was asking about twins & how are

they in

> the tummy. My hubby automatically replied that they are side by

side. I

> reflex action said " no, sometimes they are on top of each other &

twin A gets

> squished on the bottom. " I don't have twins, but I have at least

learned

> that much about twins from reading these posts:) Kimry

> Also on a funny note...did anyone else hear that breast inplants

are now FDA

> approved. HUMMMMM, maybe that is why the helmet FDA approval is

back logged,

> they were workin on the implant thing!!!!!!!!!!

[Guest guest]

For anyone who needs a positioning idea: our OT took one of those yellow

foam things you put in the baby's bath and shaped it for my son's head.

He has tort and plagio, so she hollowed out a place for the part of his

head that it ISN'T flat. It not only kept the pressure off of the flat

part somewhat, but he also then wasn't as inclined to turn his head to

the right with the tort. We mostly have used it in bed but it works in

the car seat as well. You can " shave " some off the back of the foam,

too, so there's less incline to the insert, if you want.

On Tue, 16 May 2000 21:03:12 EDT DOLY1023@... writes:

> michelle,have you tried one of those side sleeper things made for

> newborns?i

> saw one at babys r us when i was shopping for a baby shower present

> lately

> and it looks like it might be worth looking into.maybe at

> babycenter.com?

> lynne and livie.

>

>

------------------------------------------------------------------------

> Old school buds here:

> 1/4057/4/_/689409/_/958525467/

>

------------------------------------------------------------------------

>

>

[Guest guest]

In a message dated 5/17/00 10:58:48 AM Pacific Daylight Time,

aschton@... writes:

<< I only went to

Plagiocephely.org and found tons of information and none of it

suggested that plagio was about premature closure of the sutures ,

actually I'm pretty sure that condition had another name.

>>

-grab Kay and run screaming from your dr's office. Boy I know more

than him! Craniosynostosis is when the suture lines prematurely fuse. It is

only correctable by surgery & in fact a 3D CT scan should be used rtaher than

only x-rays to correctly diagnose this condition. Plagiocephaly is a

flatness, not fusing. It can be corrected with helmet or band therapy, but

in the past was treated by surgery because it was mis-diagnosed. Pin them

down & ask them if her suture lines are open or fused. You are talking apple

& oranges & they are doing a grave disservice to your family. Do not let

them schedule a surgery ( chime in here!!) until they get their

facts straight & learn to communicate clearly with you. I don't mean to

alarm you, but you e-mail really concerns me that you dr is leading you down

the wrong path. Kimry PLEASE KEEP US POSTED!

[Guest guest]

Thanks for the great idea ! Seems like something should be able to

work for us - Kailey's problem is that the WHOLE back of her head is

flat (from one ear to the other and from neck almost to the top). Do

you think if we put something like that under the neck, maybe so that

her head is tilted all the way back to the crown, it would help her

or hurt her ? I don't know. Any other suggestions ? I'm not all

that creative (or bright) sometimes. Anybody ?

> For anyone who needs a positioning idea: our OT took one of those

yellow

> foam things you put in the baby's bath and shaped it for my son's

head.

> He has tort and plagio, so she hollowed out a place for the part of

his

> head that it ISN'T flat. It not only kept the pressure off of the

flat

> part somewhat, but he also then wasn't as inclined to turn his head

to

> the right with the tort. We mostly have used it in bed but it

works in

> the car seat as well. You can " shave " some off the back of the

foam,

> too, so there's less incline to the insert, if you want.

>

> On Tue, 16 May 2000 21:03:12 EDT DOLY1023@a... writes:

> > michelle,have you tried one of those side sleeper things made for

> > newborns?i

> > saw one at babys r us when i was shopping for a baby shower

present

> > lately

> > and it looks like it might be worth looking into.maybe at

> > babycenter.com?

> > lynne and livie.

> >

> >

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

----

> > Old school buds here:

> > 1/4057/4/_/689409/_/958525467/

> >

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

----

> >

> >

[Guest guest]

,

The condition your doctor is referring to is called

CRANIOSYNOSTOSIS.

Remind her that she's a doctor and that research should be her speciality

by now!!

Grrrrrr!

Kendra

aschton@... wrote:

Implants, huh ? You guys are too funny

! Thank God I needed a

smile.

I came back to this page, today not just to check the posts but

to

get some facts- Kailey's Peds. nurse called me back about wanting

the

referral and it looks like I'm in for a fight. She said our

Doc.

looked up Plagio. and said that it was about her sutures being

fused

together prematurally and was only correctable with surgery and

she

didn't think Kay needed surgery, but she wants x-rays done first

and

then she would decide if Kay could have a referral. I told

her "No".

I wasn't trying to get Kay evaluated for surgery and we already

know

her sutures aren't closed and this is a good thing. that this Doc.

would try to help Kay Before she needed surgery and that I already

had Dr.-----------opinion and I just wanted a second one.

She goes "

So you don't want X-rays ?" AAAAAAAAAAGGGGGGGGHHHHHHHH!!!!!!!!!!!!!!!

(Yes, I'm a horrible parent who thinks it just might be fun to

watch

my baby go through that more than once) Anyway, she said

she would

talk to our Doc. again and call me back.

I'm getting ready now, to be full of information when she

calls

back. Is it like this for everyone ? (I sense that it is )

Why ? and

where do they get their information ? I only went to

Plagiocephely.org and found tons of information and none of it

suggested that plagio was about premature closure of the sutures

,

actually I'm pretty sure that condition had another name.

Well, wish us luck - I don't want to have to pay for her consult

out

of pocket, but I will if I have to.

-- In Plagiocephalyegroups, & Kendra <kbgarv@t...>

wrote:

> Implants FDA approved!!?? Set me up baby!

> Kendra

>

> AAKARA@a... wrote:

>

> > In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

> > kbgarv@t... writes:

> >

> > << First of all, your daughter is just fine! Was

she twin A? It

is

> > very

> > common for "A" baby to get squished by "B".

> > >>

> > Funny story...tonite our 6 yr old was asking about twins &

how are

> > they in

> > the tummy. My hubby automatically replied that they are

side by

> > side. I

> > reflex action said "no, sometimes they are on top of each other

&

twin

> > A gets

> > squished on the bottom." I don't have twins, but I have

at least

> > learned

> > that much about twins from reading these posts:) Kimry

> > Also on a funny note...did anyone else hear that breast inplants

are

> > now FDA

> > approved. HUMMMMM, maybe that is why the helmet FDA approval

is

back

> > logged,

> > they were workin on the implant thing!!!!!!!!!!

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

-----

> >

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

-----

> >

[Guest guest]

,

You know, your story is VERY similar to mine. Hanna is not a twin

(well, sometimes I wonder when I'm going to give birth to the second one!

Twins 6 months apart? Nah!)

Anyway......

I went for several ultrasounds when I was pregnant. The last

was about 30-32 weeks and Hanna's head was so far down they couldn't do

any measurement for her either! Everyone always commented about how

early I "dropped". When she popped out, her head and face were all

bruised, and her nose was squished to one side. It's not like it

was a hard labour that would cause such damage. I was only in labour

for less than 2 hours, and only pushed for 6 minutes (please don't hate

me!)!

Nobody ever told me that her flat nose could be an indication of a flat

head. We didn't realize till later.

Strange things indeed...........

Kendra

aschton@... wrote:

-

That is a funny story. Not only was Kailey crossways on the bottom,

but we had an ultrasound every 2 weeks from 7 weeks on, and at

every

one her Brother (who was horizontal on top)would be kicking her

in

the head ! we'd watch and every few seconds he'd kick his

feet out

towards her head and she'd move at impact.

It wasn't until I was 32 weeks that they went into the side by

side

position (head down). Unfortunately for Kailey -the tech told us

her

head was already too far down in my pelvis to even be measured

(they

could no longer see all of it)- I didn't deliver her until 37 weeks

+. My poor baby -her punkin' head was squished down in there

all

that time.( 5 weeks)

After she was born, she screamed and screamed for so long

that they

put her in the swing in the nursery when she was only 3 hours old.

She kept this up for about 3 weeks, and it's ironic now, but my

MOm

kept saying she thought Kailey was screaming so much because her

head

hurt. In retrospect , I believe she was right. Kailey's head

looked

really bad then and if you so much as touched it - she'd scream

like

she'd been burnt or something. This was also bad because

she was

born with a ton of hair and we had to wash it.

Now, though , Kay is SO laid back. She never cries unless

she's

hungry, she smiles from the time she wakes up @ 10 am until she

goes

to bed @9. She's totally content to just be left to entertain

herself. If you knew her now, you'd never believe that all the

nurses

kept telling us that she was a "bad" baby and she was labeled

the "terror of the nursery".

Anyway, I'm sorry I'm rambling and you now know Kay's life story.

Your comment about twins got me to remembering and now I really

DO

wonder if I hurt my daughter by not paying more attention back

then.

We probably could have helped her more.

well, take care

-- In Plagiocephalyegroups, AAKARA@a... wrote:

> In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

> kbgarv@t... writes:

>

> << First of all, your daughter is just fine! Was

she twin A? It

is very

> common for "A" baby to get squished by "B".

> >>

> Funny story...tonite our 6 yr old was asking about twins &

how are

they in

> the tummy. My hubby automatically replied that they are

side by

side. I

> reflex action said "no, sometimes they are on top of each other

&

twin A gets

> squished on the bottom." I don't have twins, but I have

at least

learned

> that much about twins from reading these posts:) Kimry

> Also on a funny note...did anyone else hear that breast inplants

are now FDA

> approved. HUMMMMM, maybe that is why the helmet FDA approval

is

back logged,

> they were workin on the implant thing!!!!!!!!!!

[Guest guest]

hhhaaaaahhhhhhaaaaa

you kill me Kimry!

kg

AAKARA@... wrote:

In a message dated 5/16/00 10:41:19 PM Pacific

Daylight Time,

kbgarv@... writes:

<< Implants FDA approved!!?? Set me up baby!

Kendra >>

we can go together...after 4 kids in 7 years, I can definetely

use some help

ha, ha! Kimry

[Guest guest]

Well, welcome to your tax dollars at work !!!!

Most people think they have problems with THEIR insurance - they

should try dealing with Congress ! My husbands an Army officer and

CONGRESS (Going under the name of TRICARE )only allows those of us

who live within a 30 minutes radius of a military facility to be seen

by the military Doc. we are assigned to. Only way to switch Doc.'s is

to pay for it out of pocket or get another assignment. The really

frustrating part is that since there are no Pediatric Neurosurgeons

at the Facility here she can go to an approved civilian one ( which

Dr. Flannery is). We just have to have that referral.

Never fear, though. I WILL prevail. I've been through it all

before - I was an infertility patient for 5 years ( Now THAT was a

nightmare).

By the way, OF COURSE, you know more than our Ped. A very large

percentage of military Doctors are former MD's who have lost their

license to practice. The military hires them because they are

desperate. Another fun fact ? There is a congressional law that

prohibits any military member (past or present) from ever suing a

military Doctor or facility for malpractice. Wonderful, huh ?

Well, wish me luck. Tommorrow I start fighting !!!

> In a message dated 5/17/00 10:58:48 AM Pacific Daylight Time,

> aschton@y... writes:

>

> << I only went to

> Plagiocephely.org and found tons of information and none of it

> suggested that plagio was about premature closure of the sutures ,

> actually I'm pretty sure that condition had another name.

> >>

> -grab Kay and run screaming from your dr's office. Boy I

know more

> than him! Craniosynostosis is when the suture lines prematurely

fuse. It is

> only correctable by surgery & in fact a 3D CT scan should be used

rtaher than

> only x-rays to correctly diagnose this condition. Plagiocephaly is

a

> flatness, not fusing. It can be corrected with helmet or band

therapy, but

> in the past was treated by surgery because it was mis-diagnosed.

Pin them

> down & ask them if her suture lines are open or fused. You are

talking apple

> & oranges & they are doing a grave disservice to your family. Do

not let

> them schedule a surgery ( chime in here!!) until they get

their

> facts straight & learn to communicate clearly with you. I don't

mean to

> alarm you, but you e-mail really concerns me that you dr is leading

you down

> the wrong path. Kimry PLEASE KEEP US POSTED!

[Guest guest]

Kendra !

You'd LOVE it ,if you had two Hanna's to LOVE !! twins are a lot of

fun. (Most of the time)

I'm glad you had an easy delivery. I did too. It was 6 hrs from

start to finish and I only pushed for 30 minutes total ( well, for

only about 15 actually. I was throwing up the other 15 and that's how

Kailey was delivered :0 ) I know the delivery didn't hurt Kailey,

but I feel pretty sure all of that " squished " time did. I mean, I was

walking around at 4-5 cm for 3 weeks ! And Colby was on top of her !

I know I am blessed to have carried my twins to term and they were

perfect, but I don't think being inside that long was all that great

for either of them. They were 5.9 and 5.4 pounds respectively and

both over 19 inches and I'm only 5' 4 " !

I don't believe (now)that sleeping on her back hurt Kailey's head, I

think it just made it worse. I actually thought it was a good thing

that she liked to sleep on her back. It was Colby that we stressed

over - he would ONLY sleep on his tummy . We were terrified that he

would be a SID case. ( He has a beautiful head, though. Of course

during Labor and delivery Kay did all the work. He kind of " fell "

out! LOL

Anyway,I thank God for all the people who have responded to me here,

especially you. Just curious, Have there been any " band/ helmet

graduates " since this site was started ? What were the outcomes , if

so?

Take care,

> > > In a message dated 5/15/00 10:30:56 PM Pacific Daylight Time,

> > > kbgarv@t... writes:

> > >

> > > << First of all, your daughter is just fine! Was she twin A?

It

> > is very

> > > common for " A " baby to get squished by " B " .

> > > >>

> > > Funny story...tonite our 6 yr old was asking about twins & how

are

> > they in

> > > the tummy. My hubby automatically replied that they are side by

> > side. I

> > > reflex action said " no, sometimes they are on top of each other

&

> > twin A gets

> > > squished on the bottom. " I don't have twins, but I have at

least

> > learned

> > > that much about twins from reading these posts:) Kimry

> > > Also on a funny note...did anyone else hear that breast inplants

> > are now FDA

> > > approved. HUMMMMM, maybe that is why the helmet FDA approval is

> > back logged,

> > > they were workin on the implant thing!!!!!!!!!!

> >

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

-----

> >

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

-----

> >

[Guest guest]

I cannot believe the challenge you are facing! I believe we live in the

best country in the world, but we sure do treat those who protect us like

crap! Best of luck in your fight!!

Sue

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

From: <aschton@...>

<Plagiocephalyegroups>

Sent: Thursday, May 18, 2000 12:20 AM

Subject: Re: Please Help !

> Well, welcome to your tax dollars at work !!!!

> Most people think they have problems with THEIR insurance - they

> should try dealing with Congress ! My husbands an Army officer and

> CONGRESS (Going under the name of TRICARE )only allows those of us

> who live within a 30 minutes radius of a military facility to be seen

> by the military Doc. we are assigned to. Only way to switch Doc.'s is

> to pay for it out of pocket or get another assignment. The really

> frustrating part is that since there are no Pediatric Neurosurgeons

> at the Facility here she can go to an approved civilian one ( which

> Dr. Flannery is). We just have to have that referral.

> Never fear, though. I WILL prevail. I've been through it all

> before - I was an infertility patient for 5 years ( Now THAT was a

> nightmare).

> By the way, OF COURSE, you know more than our Ped. A very large

> percentage of military Doctors are former MD's who have lost their

> license to practice. The military hires them because they are

> desperate. Another fun fact ? There is a congressional law that

> prohibits any military member (past or present) from ever suing a

> military Doctor or facility for malpractice. Wonderful, huh ?

> Well, wish me luck. Tommorrow I start fighting !!!

>

>

>

>

>

> > In a message dated 5/17/00 10:58:48 AM Pacific Daylight Time,

> > aschton@y... writes:

> >

> > << I only went to

> > Plagiocephely.org and found tons of information and none of it

> > suggested that plagio was about premature closure of the sutures ,

> > actually I'm pretty sure that condition had another name.

> > >>

> > -grab Kay and run screaming from your dr's office. Boy I

> know more

> > than him! Craniosynostosis is when the suture lines prematurely

> fuse. It is

> > only correctable by surgery & in fact a 3D CT scan should be used

> rtaher than

> > only x-rays to correctly diagnose this condition. Plagiocephaly is

> a

> > flatness, not fusing. It can be corrected with helmet or band

> therapy, but

> > in the past was treated by surgery because it was mis-diagnosed.

> Pin them

> > down & ask them if her suture lines are open or fused. You are

> talking apple

> > & oranges & they are doing a grave disservice to your family. Do

> not let

> > them schedule a surgery ( chime in here!!) until they get

> their

> > facts straight & learn to communicate clearly with you. I don't

> mean to

> > alarm you, but you e-mail really concerns me that you dr is leading

> you down

> > the wrong path. Kimry PLEASE KEEP US POSTED!

>

>

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

> Remember four years of good friends, bad clothes, explosive chemistry

> experiments.

> 1/4051/4/_/689409/_/958623634/

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

>

>