New here

[Guest guest]

Welcome to the group!! My son also had very bad facial asymmetry, but it seemed like one day we could spot it, the next it wasn't so bad, so our eyes played tricks on us- but the mirror was our tell all too- smaller eye, droopy cheek, slight bossing of forehead, ear misalignment- severe. My son was in a DOC band at approx. 5 months and graduated at approx. 8 months, his facial asymmetry and ear misalignement did not correct until the last month of his treatment. It seemed here one day, gone the next! His ears are fully aligned, and I still check him out in the mirror and can't believe all those features are symmetrical now. I also incorporated massage around the eye, jaw, cheek area, because with tort that tight muscle also can pull down facial features (as well as pull up that upper torso, like a magnet, it pulls things towards it)- so I would gently massage upwards in circles in those areas to try to ease tension in the face- not sure if this also helped resolve the asymmetry because I know others have had the same results without massage, but it sure didn't hurt! Good luck and keep the faith, soon you'll be checking out your little guy in the mirror and say, "wow!" Keep us posted!

'

[Guest guest]

Hi,

Welcome to the group! Facial asymettry is usually the last thing to

correct. But it does correct! I'm sure the parents of graduates will

chime in here and tell you how their child's band/helmet improved

their asymmetrys.

> Hi - I'm new to this group. My son was diagnosed with

plagio

> in mid-November. Right before Thanksgiving, he was fitted with the

> STAR-band helmet. He was 5 months old at this point. He's been in

> the helmet for six weeks now.

>

> The doctors say he has a highly moderate to severe case of plagio.

> It's funny because when we look at him straight on, we don't

noticed

> it too much. But when we look at his reflection in the mirror, we

> really notice it as he has definite facial asymetry. He also has

> torticollis which we are in therapy for.

>

> We've noticed pretty good improvement in the back of his head - it

> seems to be rounding out very nicely. But so far we haven't

noticed

> as much improvement in the front and the facial asymetry. I really

> hope this helmet therapy works. They say we got him into it at

just

> the right time. The doctor's say that he'll be in it until approx.

> May.

>

> Can anyone out there give me reassurance as to the success of this

> treatment? I'm worried that he'll always have facial asymetry.

Does

> this ever correct itself?

[Guest guest]

Hello!

is at a great age for correction!

My son had significant facial and ear asymmetries. He wore his band

from 5-8 months. Those asymmetries are today only a memory

Welcome to the group!

Dane's mom DOC Grad

[Guest guest]

My son Max got his Doc band on at 5 months and we are now

told he has grown out of it. He just turned 8 months today and

we get it off in a week. They keep asking us if we are going to do

another helmet. His facial asymetry looks great but the back of

his head still looks flat. We haven't decided whether or not we'll

do a second helmet yet. Good luck with your son's treatment.

Joe

Hermosa Beach, CA

[Guest guest]

HI & welcome to our group!

Assymetries are definitely correctible, but often take the longest

time to correct. He's only been in it 6 wks, and you have noticed

improvement of his head, so things are improving and working properly!

He's got several mos wearing the band left, so I'm sure the

assymetries will improve over time!

Debbie Abby's mom DOCGrad

MI

> Hi - I'm new to this group. My son was diagnosed with plagio

> in mid-November. Right before Thanksgiving, he was fitted with the

> STAR-band helmet. He was 5 months old at this point. He's been in

> the helmet for six weeks now.

>

> The doctors say he has a highly moderate to severe case of plagio.

> It's funny because when we look at him straight on, we don't noticed

> it too much. But when we look at his reflection in the mirror, we

> really notice it as he has definite facial asymetry. He also has

> torticollis which we are in therapy for.

>

> We've noticed pretty good improvement in the back of his head - it

> seems to be rounding out very nicely. But so far we haven't noticed

> as much improvement in the front and the facial asymetry. I really

> hope this helmet therapy works. They say we got him into it at just

> the right time. The doctor's say that he'll be in it until approx.

> May.

>

> Can anyone out there give me reassurance as to the success of this

> treatment? I'm worried that he'll always have facial asymetry. Does

> this ever correct itself?

[Guest guest]

Hello and welcome! I see you have already received a bunch of

responses. Banding does correct facial assymetry and ear

misalignment. This is often the last thing to correct so don't be

discouraged. It sounds like your son has already received good

correction and that is encouraging. Five months is great age to

begin just as your doctor told you so hang in there. We have

many, many babies in STARbands in this group who have

received great correction - I'm sure it will happen for too.

Keep us posted and I'm glad you have joined us.

Marci (Mom to )

Oklahoma

> Hi - I'm new to this group. My son was diagnosed with

plagio

> in mid-November. Right before Thanksgiving, he was fitted

with the

> STAR-band helmet. He was 5 months old at this point. He's

been in

> the helmet for six weeks now.

>

> The doctors say he has a highly moderate to severe case of

plagio.

> It's funny because when we look at him straight on, we don't

noticed

> it too much. But when we look at his reflection in the mirror, we

> really notice it as he has definite facial asymetry. He also has

> torticollis which we are in therapy for.

>

> We've noticed pretty good improvement in the back of his head

- it

> seems to be rounding out very nicely. But so far we haven't

noticed

> as much improvement in the front and the facial asymetry. I

really

> hope this helmet therapy works. They say we got him into it at

just

> the right time. The doctor's say that he'll be in it until approx.

> May.

>

> Can anyone out there give me reassurance as to the success

of this

> treatment? I'm worried that he'll always have facial asymetry.

Does

> this ever correct itself?

[Guest guest]

,

Welcome to our group.My name is Jane-WI, I have had RA for two years

now, I don't know a whole lot about what you are taking but someone here in the

group will know some thing,WELCOME!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jane- WI

" nataliekashyap <nataliekashyap@...> " <nataliekashyap@...>

wrote:HELLO,

IM NATALIE,IM NEW HERE, RECENTLY TOLD I HAVE RA. I WAS PUT ON

METHOTREXATE AND PREDNISONE, BUT WAS TOLD I COULD DROPT THE

PREDNISONE AS MY SYMPTOMS WERE MINAMAL, BUT FEW DAYS AGO I NOTICE A

LUMP NEAR MY WRIST. IM REALY SCARED, WHAT ARE SIDE EFFECTS OF MEDS

AND WHAT EXACTLY DOES THE PREDNISONE DO. WHOULD APPRECIATE ANYONE WHO

WOULD SHARE

[Guest guest]

,

It sounds as if you might have a Rheumatoid nodule, your Dr could

tell you for sure. I have 2 on my elbow it only hurts when I bump

it. There are several others here with nodules as well.

Also typing in all capitals comes accross as shouting. No need

to " shout " here. We're a friendly bunch. Welcome to our group

> HELLO,

> IM NATALIE,IM NEW HERE, RECENTLY TOLD I HAVE RA. I WAS PUT ON

> METHOTREXATE AND PREDNISONE, BUT WAS TOLD I COULD DROPT THE

> PREDNISONE AS MY SYMPTOMS WERE MINAMAL, BUT FEW DAYS AGO I NOTICE

A

> LUMP NEAR MY WRIST. IM REALY SCARED, WHAT ARE SIDE EFFECTS OF MEDS

> AND WHAT EXACTLY DOES THE PREDNISONE DO. WHOULD APPRECIATE ANYONE

WHO

> WOULD SHARE

[Guest guest]

Hi

Welcome to the group. I am also taking pred and mtx. I get a lot of fluid

retention and bloating, but have not had a lump anywhere. I'm sorry that I

can't answer your question, but I think that you definitely have your dr.

take a look at it. It may not be related to the meds at all. It's always

better to err on the side of caution.

Love and Hugs

Stacey

[Guest guest]

,

I have nodules on my elbows, too. I have a knot on my foot that my endo said

was a ganglion cyst. When I got bumps on the tops of my hands near my

wrists, I thought these were nodules, too. But the rheumy said they were my

bones. I guess they have eroded or something.

RA, the disease that keeps on giving.

Sue

on 1/22/03 12:21 AM, <stephanierider@...> at

stephanierider@... wrote:

> ,

> It sounds as if you might have a Rheumatoid nodule, your Dr could

> tell you for sure. I have 2 on my elbow it only hurts when I bump

> it. There are several others here with nodules as well.

[Guest guest]

Hi Autumn,

Welcome to the group! If I'm not mistaken a baby can have torticollis

and still have good range of motion. Your baby is at a great age to

receive great correction. Are you thinking of banding her?

Where are you located? Are you near a Cranial Tech office? They give

free evaluations. Here is their web site to see if they are close to

you:

http://www.cranialtech.com/ClinicLocations/clinics.html

I'm not too sure you'd get great results from repositioning since

you're having such a hard time keeping her off her flat spot. It

doesn't hurt to try though. Here are some links to repoing if you do

decide to try it:

http://www.geocities.com/alittleone2000/plagiopage.htm

http://www.cappskids.org/CAPPSRepositioning.htm

Once again welcome to the group. Please keep us posted on you little

one.

--- In Plagiocephaly , " mrsscudder " <mrsscudder@y...>

wrote:

> Hi all... My first time here, my name is Autumn. I believe my 3

> month old daughter has Positional Plagiocephaly. I never

> thought anything of her flat head, thought it was normal and that

> she'd grow out of it... until today when a friend emailed me a

> website about it. So I did some research, and learned a little

about

> it, and found this group. (my 3rd child) was premature,

born

> at 36 weeks, I'm sure that contributed to this. And she prefers to

> keep her head facing right... no matter what I do to try to adjust

> her, she moves back to the right- and I've tried everything! I

> always knew her head was flat on the back right, but I didn't

realize

> she has assymetries (sp?) as well until today when a site told me

to

> look for that. Her right ear is about 3/4 inch more forward than

the

> other, and at least a half inch higher than the other. And her

right

> eye is bigger than the other. I don't think she has torticollis

> (sp?), because when she is awake and sitting on my lap she looks

all

> around, her range of motion isn't limited.... it's when she is

laying

> down or in her swing, bouncer, or carseat that she looks right.

> Anyway... I made a Dr appt for Wednesday, I'm going to insist that

> she gets referred to a ped neuro.

> I'm glad I found this group! :-)

> ~Autumn

[Guest guest]

Autumn-

Welcome to the group!

Your daughter is at a good age to benefit from repositioning. You

can get some good info here

http://www.cappskids.org/CAPPSRepositioning.htm

http://www.plagiocephaly.org/support/repotech.htm

It is possible for a baby to have tort with ROM, so it is best you

get that checked out.

You also might want to check to make sure the neurosurgeon is plagio

friendly. Many of them aren't! If you are near a Cranial

Technologies it would be worth your time to go for a free

evaluation. If not, consider posting where you live and perhaps

someone here can recommend an ortho or experienced dr for you!

We'd love to see pics of your baby!

Keep us posted!

Dane's mom DOC Grad

[Guest guest]

Hi Autumn & welcome to our group!

So glad you have found us!!! Be sure you attempt to reposition

(love the name!) as she is sleeping. She's still at a young

enough age to get results w/repoing. There are great tips at

www.plagiocephaly.org/support repositioning tips.

Good for you finding out all this stuff on your own. You've done a

great job educating yourself!!

Good luck at your drs appt weds., please let us know how it goes. I

hope he doesn't give you a hard time about it, some peds unfortunately

do

My daughter didn't have tort either, but like your , when she

laid to sleep, there was about nothing I could do to keep her off her

flat right side.

Welcome again, we're glad to have you.

Debbie Abby's mom

MI DOCgrad

--- In Plagiocephaly , " mrsscudder " <mrsscudder@y...>

wrote:

> Hi all... My first time here, my name is Autumn. I believe my 3

> month old daughter has Positional Plagiocephaly. I never

> thought anything of her flat head, thought it was normal and that

> she'd grow out of it... until today when a friend emailed me a

> website about it. So I did some research, and learned a little about

> it, and found this group. (my 3rd child) was premature, born

> at 36 weeks, I'm sure that contributed to this. And she prefers to

> keep her head facing right... no matter what I do to try to adjust

> her, she moves back to the right- and I've tried everything! I

> always knew her head was flat on the back right, but I didn't realize

> she has assymetries (sp?) as well until today when a site told me to

> look for that. Her right ear is about 3/4 inch more forward than the

> other, and at least a half inch higher than the other. And her right

> eye is bigger than the other. I don't think she has torticollis

> (sp?), because when she is awake and sitting on my lap she looks all

> around, her range of motion isn't limited.... it's when she is laying

> down or in her swing, bouncer, or carseat that she looks right.

> Anyway... I made a Dr appt for Wednesday, I'm going to insist that

> she gets referred to a ped neuro.

> I'm glad I found this group! :-)

> ~Autumn

[Guest guest]

Autumn,

Hi and

welcome! I see some others gave

you some great information. I

wanted to share a little bit of my story because it is similar to yours. My little JD (now 8 months old) was

born at 35 weeks. You’re right

that premies are more susceptible to plagio. Around ’s age, JD also had a flat spot on the back

right side of his head from always laying towards the right and he also had

similar ear asymmetry. He then

started developing torticollis over time because of him always laying towards

the right. Tort and plagio usually

go hand-in-hand and one can cause the other and vice versa. We started noticing JD’s tort at 4-5

months when we started sitting him up more and noticed that he was starting to

be slightly delayed with some of the gross motor stuff (finding out now that

the tort was causing him to have difficulty holding his head up). JD also had full range with the tort.

Anyway, I

think it’s great that you are recognizing this and getting help so quickly. We are now in a band and receiving PT

once a week for the tort and some gross motor stuff. I wish we could have gotten started earlier like at ’s

age. Keep us posted on what you find

out next Wed. If you feel the

need, you can also request a PT eval from your ped just to make sure there aren’t

any beginning signs of tort.

Good luck

and welcome again!

& JD (DOCband since 2/26)

TX

-----Original

Message-----

From: mrsscudder

[mailto:mrsscudder@...]

Sent: Friday, March 07, 2003 7:38

PM

Plagiocephaly

Subject: New Here

Hi all... My first time here, my name is Autumn. I

believe my 3

month old daughter has Positional Plagiocephaly. I never

thought anything of her flat head, thought it was normal and that

she'd grow out of it... until today when a friend emailed me a

website about it. So I did some research, and learned a little about

it, and found this group. (my 3rd child) was premature, born

at 36 weeks, I'm sure that contributed to this. And she prefers to

keep her head facing right... no matter what I do to try to adjust

her, she moves back to the right- and I've tried everything! I

always knew her head was flat on the back right, but I didn't realize

she has assymetries (sp?) as well until today when a site told me to

look for that. Her right ear is about 3/4 inch more forward than the

other, and at least a half inch higher than the other. And her right

eye is bigger than the other. I don't think she has torticollis

(sp?), because when she is awake and sitting on my lap she looks all

around, her range of motion isn't limited.... it's when she is laying

down or in her swing, bouncer, or carseat that she looks right.

Anyway... I made a Dr appt for Wednesday, I'm going to insist that

she gets referred to a ped neuro.

I'm glad I found this group! :-)

~Autumn

For more plagio info

[Guest guest]

Keep in mind, if your pedi is knowledgable, they can order necessary cat scans or xrays and write a prescription for the DOC band. If cranio is suspected, a neurosurgeon is good to go to. BUt, that can be done after the xrays are read. You lose precious time by waiting to see a specialist because they are always so booked up.. It took us 5 weeks, and then we had to seek out a proband doc, b/c he wasnt. The earlier you band, the better chance of correcting the assymetry of her ears. Good luck. Look into an orthotist in your area.

Jen

[Guest guest]

Hi & welcome to our group!

We're happy you found us We have a member who just gave us the

link to a tummy time product that she made herself, I'm just blown

away at how great it is. Here's the link for it, it really looks like

it would be of great help to get your baby to enjoy tummy time more:

www.tummyplaytime.com

Also check out this site for more good repositioning tips;

http://www.plagiocephaly.org/support/repotech.htm

In our " files " section " help folder " there are more tips under

" repositioning " .

Repositioning works for some but not all. It can be a frustrating

task, but the results are certainly worth it!

Where abouts are you located?

WElcome again, good luck with this.

Debbie Abby's mom DOCGrad

MI

> I have a 4 month old son, Aidan who was just diagnosed w/ plagio at

his last

> pedi appt. He has left sided plagio ( flat spot on left side of

back of

> head). The doctor told us to do progressive positioning. It's not

easy b/c

> he doesn't like belly time & sitting up for a period of time. his

favorite

> position is on his back. I try to keep him laying on the right side

(bump)

> as much as possible be he frequently manages to get on his back &

sometimes

> laying on flat spot.

>

> I'd really like to avoid him having to wear a helmet mostly d/t the

warm

> weather coming up. i'm not worried about what the public thinks. I

do want

> what's best for my son & if that means getting a nice round head

from having

> to wear a helmet, then that's what we will do.

>

> Any suggestions on positioning techniques? I've been doing the roll

under

> the should blade to keep him to one side but it doesn't alway work

and he

> doesn't like the boppy. Also, i'm from Mass & have Harvard Pilgram

> insurance. Anyone else from Mass w/ that insurance? i plan on calling

> tomorrow to find out if they cover the helmet.

>

> I'm so glad i found this group & look forward to meeting all of you

plagio

> mommies!

>

>

[Guest guest]

-

Welcome to the group!

We repositioned our son from 2-4 months with limited success. His

flat spot saw progress, but his asymmetries really concerned us!

I would suggest taking weekly pictures of all angles of his head.

If he has hair, wet it down. A shot from the chin up is great at

showing facial and ear asymmetries as well as forehead bossing.

I see Debbie gave you a link, you may also want to try

http://www.cappskids.org/CAPPSRepositioning.htm

Here's a neat product one of our members designed!

http://www.tummyplaytime.com

Let us know how it goes!

Dane's mom DOC Grad

[Guest guest]

Hi ,

I can understand your wish to avoid the band/helmet if possible and

try repositioning. We did the same thing for our son (now 6 months)

based on our ped's recommendation. This worked for a while but the

progressed stalled when he turned 4 months. Besides, as my son got

older and stronger it was very difficult to keep him repositioned.

We still try to keep him on his side/tummy down/sitting up but

decided to see a plastic surgeon and move ahead with the DOC band. I

feel better with our decision as I know I will have tried everything

available to help my little one. The plagio has caused some slight

asymmetry on his ears and cheeks (only the doc and I can notice) but

I have been told these can get more pronounced with time. My husband

is an Ophthalmologist and he also told me that the asymmetries on his

face can give him some issues fitting glasses in the future.

My son will get banded next week and I am also worried about the

weather. However, I have seen LOTS of messages this week from other

moms with many tips for keeping our sons cool.

Good luck and welcome to the group.

Carolina, mommy to Mateo (6 months), Connecticut

> I have a 4 month old son, Aidan who was just diagnosed w/ plagio at

his last

> pedi appt. He has left sided plagio ( flat spot on left side of

back of

> head). The doctor told us to do progressive positioning. It's not

easy b/c

> he doesn't like belly time & sitting up for a period of time. his

favorite

> position is on his back. I try to keep him laying on the right

side (bump)

> as much as possible be he frequently manages to get on his back &

sometimes

> laying on flat spot.

>

> I'd really like to avoid him having to wear a helmet mostly d/t the

warm

> weather coming up. i'm not worried about what the public thinks.

I do want

> what's best for my son & if that means getting a nice round head

from having

> to wear a helmet, then that's what we will do.

>

> Any suggestions on positioning techniques? I've been doing the

roll under

> the should blade to keep him to one side but it doesn't alway work

and he

> doesn't like the boppy. Also, i'm from Mass & have Harvard Pilgram

> insurance. Anyone else from Mass w/ that insurance? i plan on

calling

> tomorrow to find out if they cover the helmet.

>

> I'm so glad i found this group & look forward to meeting all of you

plagio

> mommies!

>

>

[Guest guest]

Your story sounds very similar to mine. has left side flatness and we repositioned as well until the improvement stopped. Repostioning is very hard particularly at night. I would put him on his right for night sleep using all kinds of techniques and positioning aids. Every time I went in to check he had escaped. Aidan is at a great age for getting fast results with a helmet. I would go for it. started his helmet at 6 months and I wish we had started earlier. We are already seeing improvement. The repo for stopped getting results at about 4.5 months.

Regards

Natasha W

-----Original Message-----From: nancilou715@... [mailto:nancilou715@...]Sent: Monday, 31 March 2003 12:48 AMPlagiocephaly Subject: New hereI have a 4 month old son, Aidan who was just diagnosed w/ plagio at his last pedi appt. He has left sided plagio ( flat spot on left side of back of head). The doctor told us to do progressive positioning. It's not easy b/c he doesn't like belly time & sitting up for a period of time. his favorite position is on his back. I try to keep him laying on the right side (bump) as much as possible be he frequently manages to get on his back & sometimes laying on flat spot. I'd really like to avoid him having to wear a helmet mostly d/t the warm weather coming up. i'm not worried about what the public thinks. I do want what's best for my son & if that means getting a nice round head from having to wear a helmet, then that's what we will do.Any suggestions on positioning techniques? I've been doing the roll under the should blade to keep him to one side but it doesn't alway work and he doesn't like the boppy. Also, i'm from Mass & have Harvard Pilgram insurance. Anyone else from Mass w/ that insurance? i plan on calling tomorrow to find out if they cover the helmet.I'm so glad i found this group & look forward to meeting all of you plagio mommies! For more plagio info

[Guest guest]

Hi and welcome to the group. Aidan is such a beautiful name. My son was exactly the same. Jeffry would just scream if he was on his tummy. Scream for about 10 minutes, so it didn't work for us. We also tried to reposition. I know that it has worked for some, but not for us. And Jeffry to this day will sleep on the side of his head that was once flat. I really don't understand that. Best wishes, Heidi, mom to Jeffry, local helmet grad, MN New here I have a 4 month old son, Aidan who was just diagnosed w/ plagio at his last pedi appt. He has left sided plagio ( flat spot on left side of back of head). The doctor told us to do progressive positioning. It's not easy b/c he doesn't like belly time & sitting up for a period of time. his favorite position is on his back. I try to keep him laying on the right side (bump) as much as possible be he frequently manages to get on his back & sometimes laying on flat spot. I'd really like to avoid him having to wear a helmet mostly d/t the warm weather coming up. i'm not worried about what the public thinks. I do want what's best for my son & if that means getting a nice round head from having to wear a helmet, then that's what we will do.Any suggestions on positioning techniques? I've been doing the roll under the should blade to keep him to one side but it doesn't alway work and he doesn't like the boppy. Also, i'm from Mass & have Harvard Pilgram insurance. Anyone else from Mass w/ that insurance? i plan on calling tomorrow to find out if they cover the helmet.I'm so glad i found this group & look forward to meeting all of you plagio mommies! For more plagio info

[Guest guest]

In a message dated 3/30/2003 12:13:52 PM Eastern Daylight Time, dj2kirby@... writes:

Debbie

Thanks for the advice & the link!

[Guest guest]

hi, anja, and welcome to the group!

if you'd like to learn more about the book/the diet prior to buying

it, check out:

www.westonaprice.org

i think that the list price for the bk is $25, but that barnes and

noble sells it for $20, so you might be able to pick it up for less.

and, if you can find a used copy, even better.

welcome--

allene

[Guest guest]

--- In , " Anja " <schnittie01734@y...>

wrote:

> Hey,

> I am new here. I just heard from several people (in the

kefir_making-

> group) about this book, but just that they love it, nothing

> particular. So I found this group, maybe someone can introduce the

> book to me?

> How much is it and where did you get it? I found it for $ 25, is

that

> fair?

> CU Anja

NT has really changed my life, and i would pay $250 for that book if

i had to. (well, obviously this is a meaningless hypothetical

situation, but the book is epochal and revolutionary in my view.)

mike parker

[Guest guest]

I can definitely recommend Dr. Cole of Atlanta. He is the number one surgeon

for BPES in the Southeast and did my daughter's surgeries. She is 15 almost 16

now and had her last surgery this past summer. She is gorgeous.

[Guest guest]

Hi Riki:

Welcome. I, like you, did not have any information regarding bleph's

or the related infertility issues. I spent a good many years and

dollars trying to conceive. I wish I would have known sooner. I

also am amazed at the results of surgeries being done now. My

surgeries total three, and I am not totally satsifed with the outcome

either. Maybe it is because of the fabulous results I see with the

surgeries being done now. Where were your surgeries performed at and

are you considering having more? I am fourty and am wondering if it

is too late for me. I look forward to hearing from you.