Throwing in the Towel :( (LONG)

January 30, 2001

Im sorry for your frustrations but I don't think you should give up. My son

is 8months old and will be getting his Doc band next week. The ideal

situation is for babies to be in it by 6 months of age. Although ours aren't

" ideal " its still worth the try. Our insurance didn't cover the ($3000 not

7or more) cost but we are appealing it and are told will probably win. My

heart hurts for you and Im amazed how different doctors opinions can

be.....mine is supportive of the band therapy. NO matter what you need to

make this decision with your husbands concent and Im sorry for your

disagreements. Good luck.

Heidi & Luke (just casted)

January 30, 2001

Karina - Boy I understand where you are coming with. It is a hard decision.

If you do want to do something, research your providers locally and get costs. I'm surprised by those figures but you are in a large city. I told my doctor what I wanted and where I wanted to go for treatment. My insurance did cover 100% but that didn't matter at the time because it really didn't matter. Do what you think is right. At least they'll let you try treatment. It really is your choice.

Tammy & 12/8/99

January 30, 2001

Well folks, I think I'm throwing in the towel on this one. My 7 month

old was seen by two specialists at Children's Hospital in D. C.

yesterday and my fear was confirmed: they don't support/believe in

helmet therapy. (However, if I did decide to go through with this,

they would point me in the right direction.)

The Drs confirmed she has mild-moderate plagio and explained that as

she gets older and more mobile, the flatness will start to fill in.

They said she'll never have a perfectly round head and that her ears

will stay misaligned (and that not even helmet therapy will fix this

problem). Her facial asymetry is very slight (barely noticeable) and

they said that there isn't enough *objective* data to convince them

that helmet treatment is worth the expense ($7K-$10K) that insurance

won't cover and worth putting my daughter through the ordeal.

I was armed with the knowledge I've gained in my research and directed

them to the article on the long-term effect and potential

developmental problems she may have later on...to no avail. I couldn't

drive my point home, no matter how hard I tried.

Unfortunately, I've been alone in this battle (other than the

incredible support from this group), since my husband doesn't think

the specialists can be wrong. He would've opened up to the idea of

helmet therapy if the Drs would've supported/suggested it. My family

doesn't have much argument for, or against, my position and they think

her head is getting better.

The Drs suggested I continue repositioning techniques as best I can,

given this is harder as she gets older.

I've resigned to accept the deformity. All I asked God for was a

healthy baby...and thankfully that's what I have. She's beautiful,

healthy and very happy.

I have a heavy heart right now and this decision really upsets me, but

I will continue to pray to God that she keeps developing normally. I

don't know if I have the strength (or the money) to wage the war

against my husband, the medical establishment and the insurance

company alone, so I'm throwing in the towel.

Heartache in VA,

Karina & Kiara

January 30, 2001

Hi, I gave up too.. but now here we are with a band at 19 months of age.

today is the second day in it. It's easy to believe it going to straighten

out, but you have to look at your child everyday.. in our case, my son

has an identical twin so I've been tortured by how my other son should

have looked and every time I look at him I make comparisons. It's never

out of my head for one second. so if anything, this is for my peace

of mind as well as for him. I just wish I said "f you" to everyone,

including my dh (who is never supportive as he sees how upset I am by it)

earlier on. we have to drive 3 hours each way with twins to our appointments.

our son is also mild to moderate. just want you to know that I so

understand and I was there where you are now. please think of how

you'll feel if at 18 months of age her head has not changed. I thought

I would be ok with it too, and just accept it, but ifyou find yourself

thinking of it and scrutinizing your child every second of your life where

it never leaves your head, then maybe you need to do it as much for you

as for her. email me anytime, diane and andy

teegrah@... wrote:

Well folks, I think I'm throwing in the towel

on this one. My 7 month

old was seen by two specialists at Children's Hospital in D. C.

yesterday and my fear was confirmed: they don't support/believe

in

helmet therapy. (However, if I did decide to go through with this,

they would point me in the right direction.)

The Drs confirmed she has mild-moderate plagio and explained that

as

she gets older and more mobile, the flatness will start to fill

in.

They said she'll never have a perfectly round head and that her

ears

will stay misaligned (and that not even helmet therapy will fix

this

problem). Her facial asymetry is very slight (barely noticeable)

and

they said that there isn't enough *objective* data to convince

them

that helmet treatment is worth the expense ($7K-$10K) that insurance

won't cover and worth putting my daughter through the ordeal.

I was armed with the knowledge I've gained in my research and directed

them to the article on the long-term effect and potential

developmental problems she may have later on...to no avail. I couldn't

drive my point home, no matter how hard I tried.

Unfortunately, I've been alone in this battle (other than the

incredible support from this group), since my husband doesn't think

the specialists can be wrong. He would've opened up to the idea

of

helmet therapy if the Drs would've supported/suggested it. My family

doesn't have much argument for, or against, my position and they

think

her head is getting better.

The Drs suggested I continue repositioning techniques as best I

can,

given this is harder as she gets older.

I've resigned to accept the deformity. All I asked God for was a

healthy baby...and thankfully that's what I have. She's beautiful,

healthy and very happy.

I have a heavy heart right now and this decision really upsets me,

but

I will continue to pray to God that she keeps developing normally.

I

don't know if I have the strength (or the money) to wage the war

against my husband, the medical establishment and the insurance

company alone, so I'm throwing in the towel.

Heartache in VA,

Karina & Kiara

January 30, 2001

Karina,

Oh my, so sound so much like I felt. I also went to a Children's

Hosp (in St. Louis) Had one of the top 10 neurosurgens tell me

almost verbatium SP what you just wrote. The only thing he said that

was different was repositioning wouldn't work either and I should be

thankful he didn't need cvs. He is right the helmet MAY NOT work on

a 7 month old, but luckily for me, I spoke to a plastic surgeon's

nurse (the same hosp) and she told me to contact the other childrens

hosp in town decause they used a dynamic band. (NOT DOC) It seems

that often major hosp. are reluctant to volunteer info it they can

not provide the services.

I will say again, go with your GUT, I'm sure it is even harder for

you since your husband does not support any more effort. But, think

how will this decision impact the rest of my relationship with my

husband? I'm sure your baby is beautiful and maybe nothing does need

to be done, but YOU have to be happy with that decision as well.

I am in NO way telling you what to do, but I truely had chills when I

read your post because I could see myself in your place. (the tears,

the feeling that maybe I was a bad mom for not being happy with the

baby

GOD gave me, looking for things others didn't see ...... I could go

on forever)

2 months we spent going from dr. to dr. x-rays ct scans neruos

plastic surgeons....

Sam is now 3 weeks in a band. EVERYONE see's improvement (even the

people who told me that " JULIE....I'm sure the dr's know more than

you do about this "

I just want you to know, your feelings are yours and you have to be

comfortable with the decision also...WHATEVER THAT IS!

If you need anything you can e-mail me fyveboyz@....

Sorry this is so long, you really touched something in me.

and SAm

> Well folks, I think I'm throwing in the towel on this one. My 7

month

> old was seen by two specialists at Children's Hospital in D. C.

> yesterday and my fear was confirmed: they don't support/believe in

> helmet therapy. (However, if I did decide to go through with this,

> they would point me in the right direction.)

>

> The Drs confirmed she has mild-moderate plagio and explained that as

> she gets older and more mobile, the flatness will start to fill in.

> They said she'll never have a perfectly round head and that her ears

> will stay misaligned (and that not even helmet therapy will fix this

> problem). Her facial asymetry is very slight (barely noticeable) and

> they said that there isn't enough *objective* data to convince them

> that helmet treatment is worth the expense ($7K-$10K) that insurance

> won't cover and worth putting my daughter through the ordeal.

>

> I was armed with the knowledge I've gained in my research and

directed

> them to the article on the long-term effect and potential

> developmental problems she may have later on...to no avail. I

couldn't

> drive my point home, no matter how hard I tried.

>

> Unfortunately, I've been alone in this battle (other than the

> incredible support from this group), since my husband doesn't think

> the specialists can be wrong. He would've opened up to the idea of

> helmet therapy if the Drs would've supported/suggested it. My family

> doesn't have much argument for, or against, my position and they

think

> her head is getting better.

>

> The Drs suggested I continue repositioning techniques as best I can,

> given this is harder as she gets older.

>

> I've resigned to accept the deformity. All I asked God for was a

> healthy baby...and thankfully that's what I have. She's beautiful,

> healthy and very happy.

>

> I have a heavy heart right now and this decision really upsets me,

but

> I will continue to pray to God that she keeps developing normally. I

> don't know if I have the strength (or the money) to wage the war

> against my husband, the medical establishment and the insurance

> company alone, so I'm throwing in the towel.

>

> Heartache in VA,

> Karina & Kiara

January 30, 2001

whoops I meant my dh is VERY supportive now.. he did pooh pooh it for a

long time though. diane

"Diane, Nick, & Andy" wrote:

Hi, I gave up too.. but now here we are with a band

at 19 months of age. today is the second day in it. It's easy

to believe it going to straighten out, but you have to look at your child

everyday.. in our case, my son has an identical twin so I've been tortured

by how my other son should have looked and every time I look at him I make

comparisons. It's never out of my head for one second. so if anything,

this is for my peace of mind as well as for him. I just wish I said

"f you" to everyone, including my dh (who is never supportive as he sees

how upset I am by it) earlier on. we have to drive 3 hours each way

with twins to our appointments. our son is also mild to moderate.

just want you to know that I so understand and I was there where you are

now. please think of how you'll feel if at 18 months of age her head

has not changed. I thought I would be ok with it too, and just accept it,

but ifyou find yourself thinking of it and scrutinizing your child every

second of your life where it never leaves your head, then maybe you need

to do it as much for you as for her. email me anytime, diane and

andy

teegrah@... wrote:

Well folks, I think I'm throwing in the towel

on this one. My 7 month

old was seen by two specialists at Children's Hospital in D. C.

yesterday and my fear was confirmed: they don't support/believe

in

helmet therapy. (However, if I did decide to go through with this,

they would point me in the right direction.)

The Drs confirmed she has mild-moderate plagio and explained that

as

she gets older and more mobile, the flatness will start to fill

in.

They said she'll never have a perfectly round head and that her

ears

will stay misaligned (and that not even helmet therapy will fix

this

problem). Her facial asymetry is very slight (barely noticeable)

and

they said that there isn't enough *objective* data to convince

them

that helmet treatment is worth the expense ($7K-$10K) that insurance

won't cover and worth putting my daughter through the ordeal.

I was armed with the knowledge I've gained in my research and directed

them to the article on the long-term effect and potential

developmental problems she may have later on...to no avail. I couldn't

drive my point home, no matter how hard I tried.

Unfortunately, I've been alone in this battle (other than the

incredible support from this group), since my husband doesn't think

the specialists can be wrong. He would've opened up to the idea

of

helmet therapy if the Drs would've supported/suggested it. My family

doesn't have much argument for, or against, my position and they

think

her head is getting better.

The Drs suggested I continue repositioning techniques as best I

can,

given this is harder as she gets older.

I've resigned to accept the deformity. All I asked God for was a

healthy baby...and thankfully that's what I have. She's beautiful,

healthy and very happy.

I have a heavy heart right now and this decision really upsets me,

but

I will continue to pray to God that she keeps developing normally.

I

don't know if I have the strength (or the money) to wage the war

against my husband, the medical establishment and the insurance

company alone, so I'm throwing in the towel.

Heartache in VA,

Karina & Kiara

January 30, 2001

Karina,

What kind of specialist did you see? Was it a craniofacial specialist

or a surgeon? The surgeon we took to said (once he ruled out

craniosynostosis) that we didn't need to do anything for . The

craniofacial guy we saw said differently, and we pursued treatment

through him.

Becky & (5/4/00, banded since 10/13/00)

Plano, TX

teegrah@... wrote:

>

> Well folks, I think I'm throwing in the towel on this one. My 7 month