New to the group

[Guest guest]

Hi Sue! Welcome to the group!

I know it's tough dealing with all of this, but hang in there - it can

only get better from here.

Don't worry yourself over the adjustment period. Very few babies

react in a negative way to the band. My daughter was her complete

sweet self the day she got her band. She slept thru the night without

a problem, and ate fine. You may find some red sores in the first

few days which will require you to get an adjustment ASAP (if the redness

doesn't go away within an hour). Not all babies get spots, and after

a couple of adjustments, you will probably never see them again.

will probably get a case of "stinky head" in the first week or

two as well. You live in a warm area, which doesn't help! Take

the band off several times a day and towel her head, and the inside of

the band. Clean the band with the strongest alcohol you can find

(I used 99% - available if you ask the pharmacist) a couple times a day

at first, and use a nice smelly shampoo (like Loreal Kids - watermelon

mmmmm!!!)

I can imagine your grief after leaving your daughter when she's crying

from stretches!!!! Would it be possible to teach the stretches to

the caregiver, at least for the session first thing before work?

That way you wont be leaving her on a negative note. In the evening,

you would still have time to snuggle and play after stretches. The

stretches are soooo important! Please don't get discouraged.

I hope this has helped you a little!

Good luck tomorrow, and let us know how did!

Kendra

sbonna@... wrote:

Hello everyone! I have truly enjoyed reading

your messages over the

past month and have learned so much from all of you. I think

my

story is sadly all too typical. My daughter was born

5 weeks

premature on 1/21/00 by C-section and her head was perfectly shaped.

At 9 weeks of age, I was appalled to see a definite flattening

on the

right posterior side of her head. I was surprised since we

had just

been in for her 2 month visit and the ped hadn't said anything!

I

took her right in and he told me not to worry, that it would round

out when she started turning over, etc. I asked about repositioning

and he said it wasn't necessary. However, I began doing this

on my

own--it seemed the logical thing to do. At the 4 month visit

and a

visit to urgent care, I again questioned the peds about 's

flat

and got the same reply. When I asked what he would do if her head

did

not round out on it own, he said he would refer us to a neurologist

when she was a YEAR old. His nurse later told me to put

to

sleep on her stomach, which I would NOT do!

I decided to seek a 2nd opinion outside our HMO and paid

for the

opinion of a very well respected doctor in our community who said

her

head may or may not round out, but it was only a cosmetic issue,

insurance would not pay for it, and she would grow hair anyway.

I

did not know the term plagiocephaly at this point, but had a friend

of a friend whose baby had craniosynostosis. I told the new

ped that

I wanted x-rays to rule out CS and he agreed to do this at her

6

month visit. Her sutures were wide open ( a great relief)

and a few

days later there was an article in the newspaper about positional

plagiocephaly and I went to town downloading info about plagio.

I presented all this info to the ped and told him I wanted

to

agressively approach this issue.After 2 more weeks, he finally

filled

out the forms and we went for a consult for the DOC band at Cranial

Therapies in Burbank. Insurance denied the band therapy,

but we

decided to go ahead and she was cast on 9/13/00. We will

appeal the

insurance, but didn't want to waste anymore precious time.

gets her band tomorrow and I'm relieved, but very nervous as to

how

she'll adapt. Any advice? Also, she has to have range

of motion

exercises 3-5 times per day and she just screams. I know

it's not

hurting her, but it's so hard knowing you're going to upset your

baby, make her cry, and then leave for work. Anyway, I'm sorry

to

ramble on so long--this is such an emotional issue for me.

Is anyone

else going to the Burbank, CA clinic? Anyone from Bakersfield?

I'd

appreciate any input about those first few dys with the band.

Thanks

everyone! Sue

[Guest guest]

Kendra, Thanks for all your advice. We got the DOC band today,

loaded up on the watermelon shampoo and isopropyl alcohol (we could

only find 91%) and we're on our way! 's red spots fade rather

quickly and by this evening, she's stopped trying to pull it off.

It's awkward nursing her though, but I'm sure we'll get used to it!

I didn't want to ask her caregiver to perform the ROM exercises

because is so happy there, she just started going there on

August 28th and the exercises started on Sept 1st and there are two 2-

1/2 years olds who I didn't want to have to see those exercises.

Sorry I was whining about them-- the orthotist stressed again

how important they are! Next, on to the insurance appeal. Thanks

again for everything. Sue and (1/21/00)

P>S> I hope she sleeps tonight!

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

> Hi Sue! Welcome to the group!

>

> I know it's tough dealing with all of this, but hang in there - it

can

> only get better from here.

>

> Don't worry yourself over the adjustment period. Very few babies

react

> in a negative way to the band. My daughter was her complete sweet

self

> the day she got her band. She slept thru the night without a

problem,

> and ate fine. You may find some red sores in the first few days

which

> will require you to get an adjustment ASAP (if the redness doesn't

go

> away within an hour). Not all babies get spots, and after a couple

of

> adjustments, you will probably never see them again.

>

> will probably get a case of " stinky head " in the first week

or

> two as well. You live in a warm area, which doesn't help! Take the

> band off several times a day and towel her head, and the inside of

the

> band. Clean the band with the strongest alcohol you can find (I

used

> 99% - available if you ask the pharmacist) a couple times a day at

> first, and use a nice smelly shampoo (like Loreal Kids - watermelon

> mmmmm!!!)

>

> I can imagine your grief after leaving your daughter when she's

crying

> from stretches!!!! Would it be possible to teach the stretches to

the

> caregiver, at least for the session first thing before work? That

way

> you wont be leaving her on a negative note. In the evening, you

would

> still have time to snuggle and play after stretches. The stretches

are

> soooo important! Please don't get discouraged.

>

> I hope this has helped you a little!

> Good luck tomorrow, and let us know how did!

> Kendra

>

> sbonna@b... wrote:

>

> > Hello everyone! I have truly enjoyed reading your messages over

the

> > past month and have learned so much from all of you. I think my

> > story is sadly all too typical. My daughter was born 5

weeks

> > premature on 1/21/00 by C-section and her head was perfectly

shaped.

> > At 9 weeks of age, I was appalled to see a definite flattening on

the

> > right posterior side of her head. I was surprised since we had

just

> > been in for her 2 month visit and the ped hadn't said anything! I

> > took her right in and he told me not to worry, that it would round

> > out when she started turning over, etc. I asked about

repositioning

> > and he said it wasn't necessary. However, I began doing this on

my

> > own--it seemed the logical thing to do. At the 4 month visit and

a

> > visit to urgent care, I again questioned the peds about 's

flat

> > and got the same reply. When I asked what he would do if her head

did

> > not round out on it own, he said he would refer us to a

neurologist

> > when she was a YEAR old. His nurse later told me to put to

> > sleep on her stomach, which I would NOT do!

> > I decided to seek a 2nd opinion outside our HMO and paid for the

> > opinion of a very well respected doctor in our community who said

her

> > head may or may not round out, but it was only a cosmetic issue,

> > insurance would not pay for it, and she would grow hair anyway. I

> > did not know the term plagiocephaly at this point, but had a

friend

> > of a friend whose baby had craniosynostosis. I told the new ped

that

> > I wanted x-rays to rule out CS and he agreed to do this at her 6

> > month visit. Her sutures were wide open ( a great relief) and a

few

> > days later there was an article in the newspaper about positional

> > plagiocephaly and I went to town downloading info about plagio.

> > I presented all this info to the ped and told him I wanted to

> > agressively approach this issue.After 2 more weeks, he finally

filled

> > out the forms and we went for a consult for the DOC band at

Cranial

> > Therapies in Burbank. Insurance denied the band therapy, but we

> > decided to go ahead and she was cast on 9/13/00. We will appeal

the

> > insurance, but didn't want to waste anymore precious time.

> > gets her band tomorrow and I'm relieved, but very nervous as to

how

> > she'll adapt. Any advice? Also, she has to have range of motion

> > exercises 3-5 times per day and she just screams. I know it's not

> > hurting her, but it's so hard knowing you're going to upset your

> > baby, make her cry, and then leave for work. Anyway, I'm sorry to

> > ramble on so long--this is such an emotional issue for me. Is

anyone

> > else going to the Burbank, CA clinic? Anyone from Bakersfield?

I'd

> > appreciate any input about those first few dys with the band.

Thanks

> > everyone! Sue

> >

> >

> >

[Guest guest]

Sue:

Good luck tonite (I just know she'll be fine!), and good luck with insurance.

Have you looked at the appeals letters in the "files" section? They

have been a great help to many!

Keep us posted!

Kendra

sbonna@... wrote:

Kendra, Thanks for all your advice. We

got the DOC band today,

loaded up on the watermelon shampoo and isopropyl alcohol (we could

only find 91%) and we're on our way! 's red spots fade

rather

quickly and by this evening, she's stopped trying to pull it off.

It's awkward nursing her though, but I'm sure we'll get used to

it!

I didn't want to ask her caregiver to perform the ROM exercises

because is so happy there, she just started going there

on

August 28th and the exercises started on Sept 1st and there are

two 2-

1/2 years olds who I didn't want to have to see those exercises.

Sorry I was whining about them-- the orthotist stressed again

how important they are! Next, on to the insurance appeal.

Thanks

again for everything. Sue and (1/21/00)

P>S> I hope she sleeps tonight!

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

wrote:

> Hi Sue! Welcome to the group!

>

> I know it's tough dealing with all of this, but hang in there

- it

can

> only get better from here.

>

> Don't worry yourself over the adjustment period. Very few

babies

react

> in a negative way to the band. My daughter was her complete

sweet

self

> the day she got her band. She slept thru the night without

a

problem,

> and ate fine. You may find some red sores in the first

few days

which

> will require you to get an adjustment ASAP (if the redness doesn't

go

> away within an hour). Not all babies get spots, and after

a couple

of

> adjustments, you will probably never see them again.

>

> will probably get a case of "stinky head" in the first

week

or

> two as well. You live in a warm area, which doesn't help!

Take the

> band off several times a day and towel her head, and the inside

of

the

> band. Clean the band with the strongest alcohol you can

find (I

used

> 99% - available if you ask the pharmacist) a couple times a day

at

> first, and use a nice smelly shampoo (like Loreal Kids - watermelon

> mmmmm!!!)

>

> I can imagine your grief after leaving your daughter when she's

crying

> from stretches!!!! Would it be possible to teach the stretches

to

the

> caregiver, at least for the session first thing before

work? That

way

> you wont be leaving her on a negative note. In the evening,

you

would

> still have time to snuggle and play after stretches. The

stretches

are

> soooo important! Please don't get discouraged.

>

> I hope this has helped you a little!

> Good luck tomorrow, and let us know how did!

> Kendra

>

> sbonna@b... wrote:

>

> > Hello everyone! I have truly enjoyed reading your messages

over

the

> > past month and have learned so much from all of you.

I think my

> > story is sadly all too typical. My daughter was

born 5

weeks

> > premature on 1/21/00 by C-section and her head was perfectly

shaped.

> > At 9 weeks of age, I was appalled to see a definite flattening

on

the

> > right posterior side of her head. I was surprised since

we had

just

> > been in for her 2 month visit and the ped hadn't said anything!

I

> > took her right in and he told me not to worry, that it would

round

> > out when she started turning over, etc. I asked about

repositioning

> > and he said it wasn't necessary. However, I began doing

this on

my

> > own--it seemed the logical thing to do. At the 4 month

visit and

a

> > visit to urgent care, I again questioned the peds about 's

flat

> > and got the same reply. When I asked what he would do if her

head

did

> > not round out on it own, he said he would refer us to a

neurologist

> > when she was a YEAR old. His nurse later told me to put

to

> > sleep on her stomach, which I would NOT do!

> > I decided to seek a 2nd opinion outside our HMO

and paid for the

> > opinion of a very well respected doctor in our community who

said

her

> > head may or may not round out, but it was only a cosmetic issue,

> > insurance would not pay for it, and she would grow hair anyway.

I

> > did not know the term plagiocephaly at this point, but had

a

friend

> > of a friend whose baby had craniosynostosis. I told the

new ped

that

> > I wanted x-rays to rule out CS and he agreed to do this at

her 6

> > month visit. Her sutures were wide open ( a great relief)

and a

few

> > days later there was an article in the newspaper about positional

> > plagiocephaly and I went to town downloading info about plagio.

> > I presented all this info to the ped and told him

I wanted to

> > agressively approach this issue.After 2 more weeks, he finally

filled

> > out the forms and we went for a consult for the DOC band at

Cranial

> > Therapies in Burbank. Insurance denied the band therapy,

but we

> > decided to go ahead and she was cast on 9/13/00. We will

appeal

the

> > insurance, but didn't want to waste anymore precious time.

> > gets her band tomorrow and I'm relieved, but very nervous as

to

how

> > she'll adapt. Any advice? Also, she has to have

range of motion

> > exercises 3-5 times per day and she just screams. I know

it's not

> > hurting her, but it's so hard knowing you're going to upset

your

> > baby, make her cry, and then leave for work. Anyway, I'm sorry

to

> > ramble on so long--this is such an emotional issue for me.

Is

anyone

> > else going to the Burbank, CA clinic? Anyone from Bakersfield?

I'd

> > appreciate any input about those first few dys with the band.

Thanks

> > everyone! Sue

> >

> >

> >

[Guest guest]

Hi, Michele!

We were told our daughter had a " classic " case of plagiocephaly and didn't

get x-rays or CT scans -- just went straight to the helmet.

Hope the casting goes well!

By the way, we're in Omaha. Where are you?

[Guest guest]

In a message dated 10/10/00 2:47:32 PM Pacific Daylight Time,

MishnKen@... writes:

<< Did all of you have xrays done, or are

they skipping this step sometimes >>

We did not have xrays either. I found all of the posts here on this list

about xrays curious because nobody ever even mentioned xrays. We saw a ped

plastic surgeon who then referred us to the orthotist. She is being fitted

10-27. jenny

[Guest guest]

Hi ! Thanks for the warm wishes and feedback !!!!!. I'm in

Pennsylvania, moved here about 3 years ago from New Jersey. Nice to " meet "

you. Michele

[Guest guest]

Thanks for the words of support and input Beckie, I really appreciate it.

Michele

[Guest guest]

Michele - I didn't have any x-rays done - unless they do them at the fitting

place?

> -----Original Message-----

> From: Michele Vollmer [sMTP:MishnKen@...]

> Sent: Tuesday, October 10, 2000 4:46 PM

> Plagiocephalyegroups

> Subject: New to the group

>

> I'm so glad to have found this group. my 6mos.old son has

> plagiocephaly and is going to be casted tommorrow for his helmet. I

> was referred to a neurosurgeon by my pediatrician. When I called the

> neurologist, he pretty much blew me off and told me to go right to

> the orthotic center to have a helmet made and to deal with my

> pediatrician -- without xrays. Did all of you have xrays done, or are

> they skipping this step sometimes? Thanks -- Michele

>

>

>

>

[Guest guest]

Michele:

We currently have a poll going in regards to X-rays, etc. Here's

the link to it, so you can ease your mind, and please, vote for your circumstances

while you are there! )

POLLS....

Kendra

Michele Vollmer wrote:

I'm so glad to have found this group. my 6mos.old

son has

plagiocephaly and is going to be casted tommorrow for his helmet.

I

was referred to a neurosurgeon by my pediatrician. When I called

the

neurologist, he pretty much blew me off and told me to go right

to

the orthotic center to have a helmet made and to deal with my

pediatrician -- without xrays. Did all of you have xrays done,

or are

they skipping this step sometimes? Thanks -- Michele

[Guest guest]

Hi Michele, and welcome!

This is a hot topic. My daughter, , had x-rays AND a CT scan.

Part of the reason for the CT scan, though, was that they wanted to rule

out the possibility of craniosynostosis - something that CAN'T be

treated by a band/helmet. From what I've read here, whether or not you

get x-rays varies a lot from doctor to doctor.

Good luck and, again, welcome! You'll learn a lot here and you'll also

get great support - even when you just need to vent or need a " shoulder "

to cry on!

Becky & (5/4/00)

Michele Vollmer wrote:

>

> I'm so glad to have found this group. my 6mos.old son has

> plagiocephaly and is going to be casted tommorrow for his helmet. I

> was referred to a neurosurgeon by my pediatrician. When I called the

> neurologist, he pretty much blew me off and told me to go right to

> the orthotic center to have a helmet made and to deal with my

> pediatrician -- without xrays. Did all of you have xrays done, or are

> they skipping this step sometimes? Thanks -- Michele

>

>

>

[Guest guest]

Michele--

We're glad you've joined the group! Let us know how the casting goes!

[Guest guest]

Hi ,

I am also new to the group and found this site to be very helpful.

My 4 month old daughter (Siobhan) has plagio and was cast last

Friday. She was diagnosed last Wednesday and I can tell you I am

already feel much better about the whole process thanks to this

group. My daughter had x-rays and all her sutures were found to be

open. (The neorolgist I went to ordered these) It sounds as if all

doctors are different. Until I came on this site I thought everyone

had x-rays first. But I hear some people talking about a CT and

Siobhan did not have one. I am also from Pennsylvania. I am from the

Lehigh Valley area and we went to Havertown for our casting. If you

are near you may fell free to contact me directly at jc2726@...

Best of luck tomorrow. I hope things go well. Colleen & Siobhan

--- In Plagiocephalyegroups, " Michele Vollmer " <MishnKen@a...>

wrote:

> I'm so glad to have found this group. my 6mos.old son has

> plagiocephaly and is going to be casted tommorrow for his helmet. I

> was referred to a neurosurgeon by my pediatrician. When I called

the

> neurologist, he pretty much blew me off and told me to go right to

> the orthotic center to have a helmet made and to deal with my

> pediatrician -- without xrays. Did all of you have xrays done, or

are

> they skipping this step sometimes? Thanks -- Michele

[Guest guest]

You are SOOO lucky to be able to access service so quickly. We've been

trying since 8/24 and will FINALLY get in next week.

----------

>From: jc2726@...

>Plagiocephalyegroups

>Subject: Re: New to the group

>Date: Tue, Oct 10, 2000, 5:37 PM

>

>

>

> Hi ,

> I am also new to the group and found this site to be very helpful.

> My 4 month old daughter (Siobhan) has plagio and was cast last

> Friday. She was diagnosed last Wednesday and I can tell you I am

> already feel much better about the whole process thanks to this

> group. My daughter had x-rays and all her sutures were found to be

> open. (The neorolgist I went to ordered these) It sounds as if all

> doctors are different. Until I came on this site I thought everyone

> had x-rays first. But I hear some people talking about a CT and

> Siobhan did not have one. I am also from Pennsylvania. I am from the

> Lehigh Valley area and we went to Havertown for our casting. If you

> are near you may fell free to contact me directly at jc2726@...

> Best of luck tomorrow. I hope things go well. Colleen & Siobhan

>

>

>

>

>

>

>

>

>> I'm so glad to have found this group. my 6mos.old son has

>> plagiocephaly and is going to be casted tommorrow for his helmet. I

>> was referred to a neurosurgeon by my pediatrician. When I called

> the

>> neurologist, he pretty much blew me off and told me to go right to

>> the orthotic center to have a helmet made and to deal with my

>> pediatrician -- without xrays. Did all of you have xrays done, or

> are

>> they skipping this step sometimes? Thanks -- Michele

>

>

>

>

[Guest guest]

Wow , I can not believe you had to wait that long! I thought

everyone got in pretty quickly. You would think that they would try

to get you in quicker! Shows you how much I know! Good luck on Friday

and I will be in touch with everyone on her first fitting next

Tuesday. Colleen

> >> I'm so glad to have found this group. my 6mos.old son has

> >> plagiocephaly and is going to be casted tommorrow for his

helmet. I

> >> was referred to a neurosurgeon by my pediatrician. When I called

> > the

> >> neurologist, he pretty much blew me off and told me to go right

to

> >> the orthotic center to have a helmet made and to deal with my

> >> pediatrician -- without xrays. Did all of you have xrays done, or

> > are

> >> they skipping this step sometimes? Thanks -- Michele

> >

> >

> >

> >

[Guest guest]

This kind of delay is typical from rural Alaska. I know kids who waited 2

years to get into the dentist in some parts of the state. Alaska is REMOTE

(5 hours flight time from Anchorage to Seattle) and some folks may need an

extra day or so to get into the big city....

----------

>From: jc2726@...

>Plagiocephalyegroups

>Subject: Re: New to the group

>Date: Wed, Oct 11, 2000, 5:43 AM

>

>

> Wow , I can not believe you had to wait that long! I thought

> everyone got in pretty quickly. You would think that they would try

> to get you in quicker! Shows you how much I know! Good luck on Friday

> and I will be in touch with everyone on her first fitting next

> Tuesday. Colleen

>

>

>

>

>> >> I'm so glad to have found this group. my 6mos.old son has

>> >> plagiocephaly and is going to be casted tommorrow for his

> helmet. I

>> >> was referred to a neurosurgeon by my pediatrician. When I called

>> > the

>> >> neurologist, he pretty much blew me off and told me to go right

> to

>> >> the orthotic center to have a helmet made and to deal with my

>> >> pediatrician -- without xrays. Did all of you have xrays done, or

>> > are

>> >> they skipping this step sometimes? Thanks -- Michele

>> >

>> >

>> >

>> >

[Guest guest]

We had a 3-D CT to rule out craniosysostosis and to see if there was

compression to the brain due to the plagio. We were also sent to a pediatric

vision specialist because our neurosurgeon said that a large number of babies

with plagio have a condition called vision field neglect. We did not have any

x-rays.

Hope this helps!!

Marci

[Guest guest]

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

From: S & T Glaves <stglaves@...>

egroups <egroups>

Date: Wednesday, November 08, 2000 1:15 AM

Subject: [] new to the group

>Hi! My name is Tammy. I just learned about this group today. This computer

stuff is all new to me, so please be patient. I tried to chat a little but

got no response. Must not have been doing it right. I was diagnosed my CMT

almost a year ago. I found out that an aunt and a sister have it, so I

decided to get checked out. I don't have a lot of pain, just some mild

throbbing/burning if I am on my feet too long. I'm looking forward to

learning more!

>

>

>>>>Welcome Tammy, your in the right place to learn about CMT! We learn

something new on this list all the time. And its great to be able to share.

And to know were not alone. How old are you? Married? Any children?

~>Becky M.

[Guest guest]

Hi again! I just got home from work. Thanks for answering my mail. I am 30

years old. Married to a great man. Two step children, girl 14, boy 10 and

two little girls ( very adorable!) 3 and 1.

Tammy

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

From: Maxwell <rmax@...>

<egroups>

Sent: Tuesday, November 07, 2000 10:43 PM

Subject: Re: [] new to the group

>

> -----Original Message-----

> From: S & T Glaves <stglaves@...>

> egroups <egroups>

> Date: Wednesday, November 08, 2000 1:15 AM

> Subject: [] new to the group

>

>

> >Hi! My name is Tammy. I just learned about this group today. This

computer

> stuff is all new to me, so please be patient. I tried to chat a little but

> got no response. Must not have been doing it right. I was diagnosed my

CMT

> almost a year ago. I found out that an aunt and a sister have it, so I

> decided to get checked out. I don't have a lot of pain, just some mild

> throbbing/burning if I am on my feet too long. I'm looking forward to

> learning more!

> >

> >

> >>>>Welcome Tammy, your in the right place to learn about CMT! We learn

> something new on this list all the time. And its great to be able to

share.

> And to know were not alone. How old are you? Married? Any children?

> ~>Becky M.

>

>

>

>

[Guest guest]

Hi Tammy! Glad to see you joined us!

Margaret

[Guest guest]

Colleen:

Glad to see you found us (sorry I didn't link you here - duh!!!)

I think you'll find that the majority of opinions here will say that

5 months is prime time to get started with a helmet! The older the

baby, the longer treatment takes, but with most helmets, babies can be

treated until 24 months of age. Again, the earlier you start, the

better.

Please go into the files section where you will find many photos.

That way you can compare Owen's head to other baby's heads. My daughter,

Hanna's pictures are there. Her head shape was considered severe.

She got her band at 6 months of age, and wore it for 5 months.

Were you able to find a helmet manufacturer in your area? Did

you speak with Orthomerica?

Welcome to the group!

Kendra in Calgary

apurcell@... wrote:

Hello everyone,

My name is Colleen and my son, Owen (soon to be five months) was

very

recently diagnosed with torticollis and plagiocephaly. We

began

physiotherapy for the torticollis today and the therapist seems

to

think things will progress well. My big worry is his head.

Is his

head going to get better on its own? How long should I wait

before

seeking a helmet or headband? What are the consequences if

his head

stays this way? I realize I have a lot of questions but I

am feeling

a little bewildered and confused. When you look down at the

top of

his head the mis-shape of it is very obvious and his ears seem

to be

at two different points on his head, (one more forward than the

other). Since most of you seem to have already begun this

process I

would really appreciate any words of wisdom you could pass along.

I

am located on the east coast of Canada - Halifax, Nova Scotia -

so,

if anyone is in my area, I'd love to hear from you also.

Thanks a lot!

Colleen

[Guest guest]

Colleen,

I have read so many posts from people (myself included) who were told that

their babies heads would round out on their own. That was not the case for

most of us. My baby still had flatness and facial assymetry at 9 months and

we noticed the problem and pointed it out when she as 4 months. We did not

try repositioning or physical therapy because our ped did not even reccommend

this course of treatment. He blew it off when we mentioned it at 4 months and

told us that she would get better on her own. I think you are doing the right

thing with the physical therapy. I would say to go with your gut feeling. If

you feel like the physical therapy will cure the tort, but not the plagio you

may want to actively pursue helmet/band therapy right away. The choice is

really yours and you have to go with your Mommy Instinct - that is the most

powerful medecine in my opinion.

Good luck and let us know what you decide!!

Marci (Mom to )

[Guest guest]

Hi Colleen and Owen. Welcome to the group.

I am the mother of Maggie. she got her helmet one week before her

first birthday. She had tort diagnosed at 6 weeks and we tried

active repositioning but the plagio didn't get better and it didn't

get worse. From my point of view, the sooner you start treatment the

shorter the time in the helmet and the greater chance of correction.

We started late - no center for treatment near us and we couldn't

afford to fly to Chicago every week. The tort resolved quickly after

1 month of exercises but we are back in PT becuase the neck muscles

are still stronger on one side although she does have full range of

motion. There is information that uncorrected, the plagio can cause

TMJ, occular disturbances and I have an infant with chronic ear

infections. Good luck to you and Owen.

Kaycee Albany, NY

> Hello everyone,

>

> My name is Colleen and my son, Owen (soon to be five months) was

very

> recently diagnosed with torticollis and plagiocephaly. We began

> physiotherapy for the torticollis today and the therapist seems to

> think things will progress well. My big worry is his head. Is his

> head going to get better on its own? How long should I wait before

> seeking a helmet or headband? What are the consequences if his

head

> stays this way? I realize I have a lot of questions but I am

feeling

> a little bewildered and confused. When you look down at the top of

> his head the mis-shape of it is very obvious and his ears seem to

be

> at two different points on his head, (one more forward than the

> other). Since most of you seem to have already begun this process

I

> would really appreciate any words of wisdom you could pass along.

I

> am located on the east coast of Canada - Halifax, Nova Scotia - so,

> if anyone is in my area, I'd love to hear from you also.

>

> Thanks a lot!

>

> Colleen

[Guest guest]

:

How old is your son? My daughter is now 11 months old and has been wearing

her helmet since she was 9 months old. She has tolerated it extremely well!

In fact we haven't had a single problem since she started wearing it!

I would suggest looking at www.CAPS2000.org for some great information on

plagiocephaly.

Keep us posted on your situation. There isn't a question that could be asked

that someone here can't help you with!! :-)

Marci (Mom to )

[Guest guest]

Hi !

Welcome to the group. I do not live in Houston but we go to OPA in the Woodlands for the DOC Band. We live in Baton Rouge, LA and that is the closest place to get the DOC Band. Mr. Bob Cook is the orthotist and he is great! I'm not sure if there are any other Houston mommies (or daddies) here but there is someone from Beaumont! Are you going to The Woodlands? My son, Hunter, never minded the band at all! Let me know if you have any questions.

(Hunter's mom)

Baton Rouge, LA

[Guest guest]

Hi Marci and ---

My son, , is 11 months old (we got a late start--my pediatrician

didn't believe there was a problem). I am going to see Bob Cook (in the

Woodlands) on January 2nd for our first fitting. This site is

amazing---what a wonderful support system and so much information. It is

REALLY nice to know there are other parents out there that even know what

the word means, let alone have children who have experienced it. I truly

had no idea what to expect with the orthotist, so the pictures were really

helpful. I will truly be amazed if my son makes it through the molding

without having complete melt down.

Is it really true that the band doesn't seem to bother the kiddos? I am

still trying to imaging my son tolerating it well.

Thanks for the support.

H.

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

From: marcisch@... <marcisch@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Thursday, December 21, 2000 4:53 PM

Subject: Re: New to the Group

>:

>

>How old is your son? My daughter is now 11 months old and has been wearing

>her helmet since she was 9 months old. She has tolerated it extremely well!

>In fact we haven't had a single problem since she started wearing it!

>

>I would suggest looking at www.CAPS2000.org for some great information on

>plagiocephaly.

>

>Keep us posted on your situation. There isn't a question that could be

asked

>that someone here can't help you with!! :-)

>

>Marci (Mom to )

>

>

>