new to the group

[Guest guest]

Hi and welcome to the group. If you haven't heard of it, the spoon

theory on this site can help you explain having a chronic illness to

others who don't get it.

http://www.butyoudontlooksick.com/spoons.htm

Jennie (34, had RA for 1 1/2 years, mother to a beautiful 4 year old

little girl)

>

>

> Hello All,

> My name is and I have fm. I have had it for 8yrs.

> I still would like my life to be the way it was. I miss being

> able to be active. I am 50 years old and I love life and being

> involved with everything. I have three grandchildren and love

> to be part of their lives, I wnat to do things with them like

> I used to and can not and they can not understand why I do not

> go with them all the time now.

[Guest guest]

hi larry. i know what you are going though . i will soon be 48. and have R.A.

for 10 yrs. it's not easy being 48 and feeling 78. we just hang in there and

keep going . take it easy. ..... mike

bichondaddy1057 <bichondaddy1057@...> wrote:

Hi All...

Just want to introduce myself to everyone. My name is Larry and I

have severe osteoarthritis in both knees and RA in my hips. I am 47,

M/ living in the New Orleans Metro area. I just am hoping to find a

place to talk, my wife does not really seem to understand that I am

in pain 24-7/365, and it does get old hurting all the time.

Larry...

[Guest guest]

Welcome! So glad you are joining in the search for an explant

surgeon. I hope you can find one close to you in Minnesota. I could

not find one near my home, so I opted to fly to Dallas and had the

surgery with Dr. Melmed as my surgeon. There are a number of

excellent surgeons, I'm sure, and perhaps some of the other members on

the site can give you names nearer to where you are.

Yes, your symptoms sound so familiar to me. I did not have the calf

problem, but I had other serious, painful areas of my body.

It's so exciting that you are seeking to improve your health, and it

sounds like you've chosen the en bloc procedure. I had my implants

for over 7 years, and so I also decided on the en bloc

procedure...Sounds like you are on the right track! J

[Guest guest]

Hi,

I'm really sorry to hear about the problems you are

having... I had implants put in May of '02, Had

explant done by Dr. Feng almost 3 weeks ago.

My symptoms began 2 most after implantation. I, like

pretty much most other implantees, developed

hypothyroidism, joint/muscle pain/ sleep problems,

weight gain, candida, hair loss, gnawing depression,

disabling fatigue, sleep problems, memory problems,

and more.

Only 3 weeks post explant and I no longer am fatigued,

I am no longer depressed. I am hopeful that I will

fully recover.

Your symptoms sound like they are related to your

implants... as you will see, we all have these same

symptoms that started AFTER implants.. somethin' to

that don't ya think?

Dawn

--- bluejayfauxpainter <bluejayfauxpainter@...>

wrote:

> i have been doing a lot of research about

> explantation. i had saline

> implants put in 8 years ago. i would like them out.

> i have been having

> some left breast pain for the past couple of months.

> I just related it

> to possibly sleeping wrong or weightlifting. after

> reading about

> problems of implants i have a lot of the same

> problems. I am

> hypothyroid, fatiqued, joint aches, i also developed

> what they call

> benign fasciculations (my calves twitch 24 hours a

> day) This started

> July of last year. Very weird and scary. One of my

> questions is how do

> you find a good surgeon who does the en-bloc

> procedure? I live in

> Minnesota if anyone knows of anyone. I read about

> lu-jean Feng, buts

> thats kind of far. oh yea, i also have sleeping

> terrible and feel i

> have memory problems. If anyone can help please

> e-mail me. thankyou

>

>

>

>

__________________________________________________

[Guest guest]

I meant post implantees on this site

--- dawn A <daldre@...> wrote:

> Hi,

> I'm really sorry to hear about the problems you are

> having... I had implants put in May of '02, Had

> explant done by Dr. Feng almost 3 weeks ago.

>

> My symptoms began 2 most after implantation. I, like

> pretty much most other implantees, developed

> hypothyroidism, joint/muscle pain/ sleep problems,

> weight gain, candida, hair loss, gnawing depression,

> disabling fatigue, sleep problems, memory problems,

> and more.

>

> Only 3 weeks post explant and I no longer am

> fatigued,

> I am no longer depressed. I am hopeful that I will

> fully recover.

>

> Your symptoms sound like they are related to your

> implants... as you will see, we all have these same

> symptoms that started AFTER implants.. somethin' to

> that don't ya think?

> Dawn

> --- bluejayfauxpainter

> <bluejayfauxpainter@...>

> wrote:

>

> > i have been doing a lot of research about

> > explantation. i had saline

> > implants put in 8 years ago. i would like them

> out.

> > i have been having

> > some left breast pain for the past couple of

> months.

> > I just related it

> > to possibly sleeping wrong or weightlifting. after

> > reading about

> > problems of implants i have a lot of the same

> > problems. I am

> > hypothyroid, fatiqued, joint aches, i also

> developed

> > what they call

> > benign fasciculations (my calves twitch 24 hours a

> > day) This started

> > July of last year. Very weird and scary. One of my

> > questions is how do

> > you find a good surgeon who does the en-bloc

> > procedure? I live in

> > Minnesota if anyone knows of anyone. I read about

> > lu-jean Feng, buts

> > thats kind of far. oh yea, i also have sleeping

> > terrible and feel i

> > have memory problems. If anyone can help please

> > e-mail me. thankyou

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

-

HI. Welcome to our site. I don't know any doctor to recommend closer

than Dr. Feng, who I

went to, but maybe someone else will. I just wanted to welcome you

to

the group and tell you that your symptoms sound very common to sick

implanted women. I had mine in for eleven years before getting them

out. It was just a slow progression in symptoms for me until all of

a

sudden they suddenly got much worse. Then, in a period of weeks, my

life fell apart. I got about twenty new symptoms and many were very

frightening. Not only did I get the muscle twitches everywhere, but

I

started getting electric shock like pains all through my head and

other areas of my body. I got terrible unrelenting dizzy, out of

body

feelings, overwhelming fatigue and constant muscle spasms in my

calves

and cramping. I got tendonitis all over my body and the list goes

on

and on. I think there is a good chance your implants are making you

sick and I am so glad that you are considering explantation. I

travelled to see Dr. Feng from Illinois. My husband drove me and we

stayed in a very reasonable motel. I was explanted on a wednesday,

and got my drains out on friday morning and was headed home. Monday

I

was back at work. So don't let the distance deter you. In fact,

many

women on this site travelled a distance to get their implants out.

It

is very important that you go to someone who will do it correctly.

It

is important to remove them along with all the capsule that your

body

has formed around the implants or you may not be able to get well.

It

is also important to get drains put in which help with swelling and

make it less likely to have a complication. Most women find the

explantation to be a breeze. This is a very supportive and

knowledgeable group, so please feel free to share any questions or

concerns that you might have. We would be more than happy to help

you in any way we can!

Hugs

Kathy

-- In , " bluejayfauxpainter "

<bluejayfauxpainter@y...> wrote:

> i have been doing a lot of research about explantation. i had

saline

> implants put in 8 years ago. i would like them out. i have been

having

> some left breast pain for the past couple of months. I just

related

it

> to possibly sleeping wrong or weightlifting. after reading about

> problems of implants i have a lot of the same problems. I am

> hypothyroid, fatiqued, joint aches, i also developed what they

call

> benign fasciculations (my calves twitch 24 hours a day) This

started

> July of last year. Very weird and scary. One of my questions is

how

do

> you find a good surgeon who does the en-bloc procedure? I live in

> Minnesota if anyone knows of anyone. I read about lu-jean Feng,

buts

> thats kind of far. oh yea, i also have sleeping terrible and feel

i

> have memory problems. If anyone can help please e-mail me. thankyou

[Guest guest]

Hello and welcome to the group. There have been several babies on

here that have been banded older (10 mo and older) and still had

wonderful results. I'm a little confused that your Daughter has been

in her Hanger Band for 9 months. Is she on her 2nd band? I've never

heard of a baby being in 1 band for that long. Maybe I'm wrong. My

Daughter has a Hanger band also (she was banded shortly after 7 mo)

and will be done with it after about 3 months total. My Ortho told

me that they usually wear the band for 3-4 Months and that seems to

be the same for most bands. Some wear it up to 6 months depending on

their age at banding. Just curious. How severe was her plagio to

begin with? Do you have any pictures of her?

Well... we are all here to support you and answer any questions you

may have. Good luck and keep us updated on her progress.

Jen

(9 mo), tort and plagio, Hanger Band 3/9/05

(3 years)

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hello and welcome to the group. There have been several babies on

here that have been banded older (10 mo and older) and still had

wonderful results. I'm a little confused that your Daughter has been

in her Hanger Band for 9 months. Is she on her 2nd band? I've never

heard of a baby being in 1 band for that long. Maybe I'm wrong. My

Daughter has a Hanger band also (she was banded shortly after 7 mo)

and will be done with it after about 3 months total. My Ortho told

me that they usually wear the band for 3-4 Months and that seems to

be the same for most bands. Some wear it up to 6 months depending on

their age at banding. Just curious. How severe was her plagio to

begin with? Do you have any pictures of her?

Well... we are all here to support you and answer any questions you

may have. Good luck and keep us updated on her progress.

Jen

(9 mo), tort and plagio, Hanger Band 3/9/05

(3 years)

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Thanks Jen!

Well, Kaylee wasn't diagnosed with Torticollis and Plagiocephaly

until she was 9 months old. We had been turned away by 6 different

doctors (who all told us it would go away on it's own) before she

was referred to a specialist. Then we waited two more months until

she was put in the helmet. She's been in the same one all this time.

We were told that babies head growth slows down around one year of

age and if she were a couple months older, they wouldn't even

attempt helmet treatment. This is also why it is taking so long to

reshape. It had gotten so severe her whole left side of her face was

shifted forward along with her ear, which had also changed in shape.

All my pictures are at my home computer so I'll try to post some

tonight. I didn't really take any of her for that reason so most of

them are just portraits, but you can still tell. Thanks again

Jen!

> > Hello everyone! My name is Marissa. I've never used a message

board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

to

> a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Thanks Jen!

Well, Kaylee wasn't diagnosed with Torticollis and Plagiocephaly

until she was 9 months old. We had been turned away by 6 different

doctors (who all told us it would go away on it's own) before she

was referred to a specialist. Then we waited two more months until

she was put in the helmet. She's been in the same one all this time.

We were told that babies head growth slows down around one year of

age and if she were a couple months older, they wouldn't even

attempt helmet treatment. This is also why it is taking so long to

reshape. It had gotten so severe her whole left side of her face was

shifted forward along with her ear, which had also changed in shape.

All my pictures are at my home computer so I'll try to post some

tonight. I didn't really take any of her for that reason so most of

them are just portraits, but you can still tell. Thanks again

Jen!

> > Hello everyone! My name is Marissa. I've never used a message

board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

to

> a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Marissa,

Hello and welcome! I can understand your frustration, 9 months is a

long time. How severe was the plagio? She has only had one band the

whole time? How much correction have you seen so far? We have many

babies here banded at 10 months and older who received excellent

correction, maybe not perfect, but pretty close. Do you have pictures

of how it looked before treatment started and now? What facility are

you using? You came to thr right place for support and understanding,

we have a very special group here. Let me know the answers to my

million questions if you can.

CAROLG

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Marissa,

Hello and welcome! I can understand your frustration, 9 months is a

long time. How severe was the plagio? She has only had one band the

whole time? How much correction have you seen so far? We have many

babies here banded at 10 months and older who received excellent

correction, maybe not perfect, but pretty close. Do you have pictures

of how it looked before treatment started and now? What facility are

you using? You came to thr right place for support and understanding,

we have a very special group here. Let me know the answers to my

million questions if you can.

CAROLG

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hi Marissa,

I am really sorry to hear this. Do you know how much experience your

ortho has when it comes to treating plagio babies? It is unheard of

that your baby has been in the same helmet for 6 months!! I wouldn't

be surprised if that is why she's hasn't received better correction.

The life of an active band is ususally on 4 to 4.5 months. My baby

wasn't DOCbanded until she was almost 11.5 months old, she received

over 90+% correction. Yes, it's true that head growth does slow

down, but in 9 months time your daughter should have recieved some

really nice correction. I hope you don't think I'm being too harsh,

it just really upsets me when I see posts like this. Things like this

shouldn't be happening.

Where are you located? Are you near a Cranial Tech office? If you are

I think it would be an excellent idea to go in for a free

consultation. They are the leaders in treating babies with plagio. If

you're interested click on this link for their clinic locations:

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

Please keep us posted.

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hi Marissa,

I am really sorry to hear this. Do you know how much experience your

ortho has when it comes to treating plagio babies? It is unheard of

that your baby has been in the same helmet for 6 months!! I wouldn't

be surprised if that is why she's hasn't received better correction.

The life of an active band is ususally on 4 to 4.5 months. My baby

wasn't DOCbanded until she was almost 11.5 months old, she received

over 90+% correction. Yes, it's true that head growth does slow

down, but in 9 months time your daughter should have recieved some

really nice correction. I hope you don't think I'm being too harsh,

it just really upsets me when I see posts like this. Things like this

shouldn't be happening.

Where are you located? Are you near a Cranial Tech office? If you are

I think it would be an excellent idea to go in for a free

consultation. They are the leaders in treating babies with plagio. If

you're interested click on this link for their clinic locations:

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

Please keep us posted.

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to

a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hi Marissa,

I can understand your frustration and your exhaustion - 9 months is a very long

time.

Whlie 10 months is not an ideal age to be banded, it still should have produced

excellent

results, especially after 9 months - especially for plagio, which is easier to

correct than

Brachy. (and ditto on all the other comments on the one helmet). Do tell us

how much

correction she did receive, is she much better, etc? She's right on the border

of where

Cranial Tech will band, especially if she's a preemie, so if you're still very

unhappy (as

opposed to just wanting perfection) you might be able to stick her in a DOC band

if you

hurry. If you're unhappy, it's worth a shot. Keep us posted, and good luck.

Monika

Mom to Sophia, 11 months, Brachy, DOC band

> Hello everyone! My name is Marissa. I've never used a message board

> before and I've decided to join this one because the entire treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and has

> been in a Hanger helmet for almost 9 months now. Basically the last

> few months there has been only a small amount of progress, due to her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens to a

> lot of people, where the diagnosis and treatment is started very late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through some

> of the messages and notice how welcoming and helpful everyone is and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hi CarolG. Thanks so much for your support! Well, Kaylee's plagio

was pretty severe once she started treatment. The whole left side of

her face had severely shifted along with her ear. Yes she's been in

the same helmet all along. It has gotten alot better, and her face

isn't so obvious anymore, but her head is a little flat still. Not

too noticeably, but you can really tell when her hair is wet. We are

in Portland, Oregon so she saw specialist and did therapy at

Doernbecher's Children's Hospital and then has had her helmet

checkups at Hanger. There is no specialist or doctor at Doernbecher

following up with her. Not even her physican, this is what

frustrates me. It's like they don't think it's the big of a deal.

But anyways, thanks again. All you guys have already been great!

Marissa

> > Hello everyone! My name is Marissa. I've never used a message

board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

to

> a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Hi ! No, I don't think your being too harsh! Well, I'm not

near a Cranial Tech clinic but we go through Hanger. The guy we see

is actually one of the three that developed the Hanger helmet. He

said they always just use one helmet cause you can just loosen the

buckle on the side as the baby grows. So I guess thats why. Also,we

go in once a month and he does adjustments to the pressure points in

her helmet.

We are in Portland Oregon. Kaylee saw the cranialfacial specialist

at Doernbecher Children's Hospital who then got us hooked up with

Hanger. My daughter's reg. doctors clinic is at Dorenbecher too.

There we met with 6 different doctors throughout the first 9 months

of Kaylee's life. None of them knew what was wrong with Kaylee and

said it would go away on it's own. It wasn't until the last one we

saw. As soon as she saw Kaylee, she said, " She has Torticollis and

Plagiocephaly " then we were referred.

I'll try to post pictures soon. We just moved so everything is still

packed away. Thanks again Tracey!

Marissa

> > Hello everyone! My name is Marissa. I've never used a message

board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

to

> a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Hi ! No, I don't think your being too harsh! Well, I'm not

near a Cranial Tech clinic but we go through Hanger. The guy we see

is actually one of the three that developed the Hanger helmet. He

said they always just use one helmet cause you can just loosen the

buckle on the side as the baby grows. So I guess thats why. Also,we

go in once a month and he does adjustments to the pressure points in

her helmet.

We are in Portland Oregon. Kaylee saw the cranialfacial specialist

at Doernbecher Children's Hospital who then got us hooked up with

Hanger. My daughter's reg. doctors clinic is at Dorenbecher too.

There we met with 6 different doctors throughout the first 9 months

of Kaylee's life. None of them knew what was wrong with Kaylee and

said it would go away on it's own. It wasn't until the last one we

saw. As soon as she saw Kaylee, she said, " She has Torticollis and

Plagiocephaly " then we were referred.

I'll try to post pictures soon. We just moved so everything is still

packed away. Thanks again Tracey!

Marissa

> > Hello everyone! My name is Marissa. I've never used a message

board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

to

> a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Hi Marissa,

I'm so happy to hear that her ortho does have experience. It still

blows me away that she's been in one band for so long, I've never

heard of that before. I'd love to see pics of your little one!!

Good luck unpacking. Please keep us posted on Kaylee.

> > > Hello everyone! My name is Marissa. I've never used a message

> board

> > > before and I've decided to join this one because the entire

> > treatment

> > > for my daughter's Plagiocephaly has been very frustrating and

> > > exhausting(which I know you all are also going through) and

it's

> > > finally wearing me down. My daughter, Kaylee is 19 months old

> and

> > has

> > > been in a Hanger helmet for almost 9 months now. Basically the

> last

> > > few months there has been only a small amount of progress, due

> to

> > her

> > > age. So we've been pushing for that last little bit. She will

> have

> > > some permanant deformation. I was just wondering if this

happens

> to

> > a

> > > lot of people, where the diagnosis and treatment is started

very

> > late?

> > > Anyways, I'm hoping this message board will help me feel a

> little

> > > better about all of it and give me some relief. I've read

> through

> > some

> > > of the messages and notice how welcoming and helpful everyone

is

> > and I

> > > just think that's what we all need!

> > > Thanks and I look forward to meeting you all!

> > > Marissa

> > > (mom of Kaylee)

[Guest guest]

Hi Marissa,

I'm so happy to hear that her ortho does have experience. It still

blows me away that she's been in one band for so long, I've never

heard of that before. I'd love to see pics of your little one!!

Good luck unpacking. Please keep us posted on Kaylee.

> > > Hello everyone! My name is Marissa. I've never used a message

> board

> > > before and I've decided to join this one because the entire

> > treatment

> > > for my daughter's Plagiocephaly has been very frustrating and

> > > exhausting(which I know you all are also going through) and

it's

> > > finally wearing me down. My daughter, Kaylee is 19 months old

> and

> > has

> > > been in a Hanger helmet for almost 9 months now. Basically the

> last

> > > few months there has been only a small amount of progress, due

> to

> > her

> > > age. So we've been pushing for that last little bit. She will

> have

> > > some permanant deformation. I was just wondering if this

happens

> to

> > a

> > > lot of people, where the diagnosis and treatment is started

very

> > late?

> > > Anyways, I'm hoping this message board will help me feel a

> little

> > > better about all of it and give me some relief. I've read

> through

> > some

> > > of the messages and notice how welcoming and helpful everyone

is

> > and I

> > > just think that's what we all need!

> > > Thanks and I look forward to meeting you all!

> > > Marissa

> > > (mom of Kaylee)

[Guest guest]

Marissa,

Welcome, welcome!! This is such a great board! I'm fairly new

myself and don't have much advice as we are just starting our band

journey (although I was asking about their heads since they were

born!). There are lots of ladies with great advice here. And I've

participated in the Chat a few times and that was fun. I'm hoping

to do it more often. Maybe I'll see you there. Hopefully hanging

out with other moms who have been in your shoes will help you with

your frustrations. At least you'll have others to vent to who truly

understand (I'm sure you have great friends but as the saying goes -

and this fits so many situations, not just plagio - you don't know

what it's like until you've walked in their shoes). Post some pics

when you get a chance if you know how (if not ask, someone can walk

you through it), I'd love to see your little darlin'!!

Jenn T.

Logan 7 months brachy/plagio/tort pre DOC

Brecken 7 months plagio/tort DOCband 5/2/05

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message

board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the

last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens

to a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Marissa,

Welcome, welcome!! This is such a great board! I'm fairly new

myself and don't have much advice as we are just starting our band

journey (although I was asking about their heads since they were

born!). There are lots of ladies with great advice here. And I've

participated in the Chat a few times and that was fun. I'm hoping

to do it more often. Maybe I'll see you there. Hopefully hanging

out with other moms who have been in your shoes will help you with

your frustrations. At least you'll have others to vent to who truly

understand (I'm sure you have great friends but as the saying goes -

and this fits so many situations, not just plagio - you don't know

what it's like until you've walked in their shoes). Post some pics

when you get a chance if you know how (if not ask, someone can walk

you through it), I'd love to see your little darlin'!!

Jenn T.

Logan 7 months brachy/plagio/tort pre DOC

Brecken 7 months plagio/tort DOCband 5/2/05

--- In Plagiocephaly , " marissa272 " <jnknagel@c...>

wrote:

> Hello everyone! My name is Marissa. I've never used a message

board

> before and I've decided to join this one because the entire

treatment

> for my daughter's Plagiocephaly has been very frustrating and

> exhausting(which I know you all are also going through) and it's

> finally wearing me down. My daughter, Kaylee is 19 months old and

has

> been in a Hanger helmet for almost 9 months now. Basically the

last

> few months there has been only a small amount of progress, due to

her

> age. So we've been pushing for that last little bit. She will have

> some permanant deformation. I was just wondering if this happens

to a

> lot of people, where the diagnosis and treatment is started very

late?

> Anyways, I'm hoping this message board will help me feel a little

> better about all of it and give me some relief. I've read through

some

> of the messages and notice how welcoming and helpful everyone is

and I

> just think that's what we all need!

> Thanks and I look forward to meeting you all!

> Marissa

> (mom of Kaylee)

[Guest guest]

Hi Jen T. Thanks so much for your kind words! I agree about the

support thing. My friends are great to talk with about Kaylee but

they just don't understand what a journey it has truely been! You

guys have all been great! I appreciate that! I'm going to post

some pictures of Kaylee tonight so hope you see them!

You have twins, huh? Are they identical. We also have 4 year old

twins Jaden and Noah. It's a lot of fun, but a look of work.....

Watch out!!! JK!

Anyways, thanks again!

Marissa

(Kaylee - 19 months old, Hanger helmet

> > Hello everyone! My name is Marissa. I've never used a message

> board

> > before and I've decided to join this one because the entire

> treatment

> > for my daughter's Plagiocephaly has been very frustrating and

> > exhausting(which I know you all are also going through) and it's

> > finally wearing me down. My daughter, Kaylee is 19 months old

and

> has

> > been in a Hanger helmet for almost 9 months now. Basically the

> last

> > few months there has been only a small amount of progress, due

to

> her

> > age. So we've been pushing for that last little bit. She will

have

> > some permanant deformation. I was just wondering if this happens

> to a

> > lot of people, where the diagnosis and treatment is started very

> late?

> > Anyways, I'm hoping this message board will help me feel a

little

> > better about all of it and give me some relief. I've read

through

> some

> > of the messages and notice how welcoming and helpful everyone is

> and I

> > just think that's what we all need!

> > Thanks and I look forward to meeting you all!

> > Marissa

> > (mom of Kaylee)

[Guest guest]

Hi Marissa,

Welcome to the group. oh I wish you'd found us sooner so we could help with your frustration. My daughter started treatment early - 4 1/2 months and wore 2 DOC bands. However she still graduated with some asymmetry. It all depends on the severity and where it is. Her remaining flat spot is high on the back left. Most likely permanent skull formation issues from inuterine constraint. Most kids don't get 100% correction however usually it's only hte parents that can tell.

Growth does slow down past one year I do understand your frustration. Has she had good correction but just not as much as you had hoped for?

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.commarissa272 <jnknagel@...> wrote:

Hello everyone! My name is Marissa. I've never used a message board before and I've decided to join this one because the entire treatment for my daughter's Plagiocephaly has been very frustrating and exhausting(which I know you all are also going through) and it's finally wearing me down. My daughter, Kaylee is 19 months old and has been in a Hanger helmet for almost 9 months now. Basically the last few months there has been only a small amount of progress, due to her age. So we've been pushing for that last little bit. She will have some permanant deformation. I was just wondering if this happens to a lot of people, where the diagnosis and treatment is started very late?Anyways, I'm hoping this message board will help me feel a little better about all of it and give me some relief. I've read through some of the messages and notice

how welcoming and helpful everyone is and I just think that's what we all need! :)Thanks and I look forward to meeting you all!Marissa(mom of Kaylee)For more plagio info

[Guest guest]

Hi Marissa,

Welcome to the group. oh I wish you'd found us sooner so we could help with your frustration. My daughter started treatment early - 4 1/2 months and wore 2 DOC bands. However she still graduated with some asymmetry. It all depends on the severity and where it is. Her remaining flat spot is high on the back left. Most likely permanent skull formation issues from inuterine constraint. Most kids don't get 100% correction however usually it's only hte parents that can tell.

Growth does slow down past one year I do understand your frustration. Has she had good correction but just not as much as you had hoped for?

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.commarissa272 <jnknagel@...> wrote:

Hello everyone! My name is Marissa. I've never used a message board before and I've decided to join this one because the entire treatment for my daughter's Plagiocephaly has been very frustrating and exhausting(which I know you all are also going through) and it's finally wearing me down. My daughter, Kaylee is 19 months old and has been in a Hanger helmet for almost 9 months now. Basically the last few months there has been only a small amount of progress, due to her age. So we've been pushing for that last little bit. She will have some permanant deformation. I was just wondering if this happens to a lot of people, where the diagnosis and treatment is started very late?Anyways, I'm hoping this message board will help me feel a little better about all of it and give me some relief. I've read through some of the messages and notice

how welcoming and helpful everyone is and I just think that's what we all need! :)Thanks and I look forward to meeting you all!Marissa(mom of Kaylee)For more plagio info