Re: stuck like this forever

[Guest guest]

Haylee,

Is the DOCband not an option for you? Are you located near any Cranial

Tech offices? They offer free evaluations.

http://www.cranialtech.com

If you aren't near a CT office have you thought about Angel Flights?

They'll fly you for free to and from your appointments.

http://www.aircareall.org

It's NOT too late for your son! All you need is a prescription from

your pediatrician. We have A LOT of older babies that were/are in

DOCbands and received really nice correction.

Keep us posted.

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

Haylee,

Is the DOCband not an option for you? Are you located near any Cranial

Tech offices? They offer free evaluations.

http://www.cranialtech.com

If you aren't near a CT office have you thought about Angel Flights?

They'll fly you for free to and from your appointments.

http://www.aircareall.org

It's NOT too late for your son! All you need is a prescription from

your pediatrician. We have A LOT of older babies that were/are in

DOCbands and received really nice correction.

Keep us posted.

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

We live in Canada and Calgary and Edmonton both said no because he

is too old. I wish it wasn't too late but I am really begining to

think it is. I really feel horrible about all this and I am totally

blaming myself even though I know I shouldn't.

Haylee

--- In Plagiocephaly , " stripes6060 " <taime@o...>

wrote:

>

> Haylee,

> Is the DOCband not an option for you? Are you located near any

Cranial

> Tech offices? They offer free evaluations.

> http://www.cranialtech.com

> If you aren't near a CT office have you thought about Angel

Flights?

> They'll fly you for free to and from your appointments.

> http://www.aircareall.org

> It's NOT too late for your son! All you need is a prescription from

> your pediatrician. We have A LOT of older babies that were/are in

> DOCbands and received really nice correction.

> Keep us posted.

>

>

> --- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

> >

> > We've hit another brick wall today. I feel so horrible. My son

is

> > 13 months old and had 2 bad fitting STARbands. He still has a

flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

around

> > with his sholders hunched. We had an appointment with a

neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

has

> > seen. Is he saying I was lying. He said he thinks my son looks

like

> > a cute little boy. Obviously the ped has told him just to

reassure

> > us. He told me to pretend that this never happened and my son

will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

it

> > as moderate to sever and it hasn't changed that much since

then. I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

We live in Canada and Calgary and Edmonton both said no because he

is too old. I wish it wasn't too late but I am really begining to

think it is. I really feel horrible about all this and I am totally

blaming myself even though I know I shouldn't.

Haylee

--- In Plagiocephaly , " stripes6060 " <taime@o...>

wrote:

>

> Haylee,

> Is the DOCband not an option for you? Are you located near any

Cranial

> Tech offices? They offer free evaluations.

> http://www.cranialtech.com

> If you aren't near a CT office have you thought about Angel

Flights?

> They'll fly you for free to and from your appointments.

> http://www.aircareall.org

> It's NOT too late for your son! All you need is a prescription from

> your pediatrician. We have A LOT of older babies that were/are in

> DOCbands and received really nice correction.

> Keep us posted.

>

>

> --- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

> >

> > We've hit another brick wall today. I feel so horrible. My son

is

> > 13 months old and had 2 bad fitting STARbands. He still has a

flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

around

> > with his sholders hunched. We had an appointment with a

neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

has

> > seen. Is he saying I was lying. He said he thinks my son looks

like

> > a cute little boy. Obviously the ped has told him just to

reassure

> > us. He told me to pretend that this never happened and my son

will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

it

> > as moderate to sever and it hasn't changed that much since

then. I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

How frustrating Haylee. If you are truly upset about your head

shape and feel your son needs another band than I wouldn't give up.

Thirteen mos isn't too old to get good correction. Where are you

located? You need to get someone to suggest a good helmet friendly

specialist. What about that first plastic surgeon you saw who

diagnosed him? Would he write you another script? What are you

local banding options? You obviously had a bad STARband ortho, but

do you have other local options for active bands? If not, could you

use Angel Flight? You only have a small window to fix his plagio,

and you don't want to regret not doing anything, so if you still

feel he's moderate to severe I'd go w/your gut and act on it. Do

you have any current pics of his shape? Good luck and please let us

know what happens.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> We've hit another brick wall today. I feel so horrible. My son

is

> 13 months old and had 2 bad fitting STARbands. He still has a

flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks

around

> with his sholders hunched. We had an appointment with a

neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he

has

> seen. Is he saying I was lying. He said he thinks my son looks

like

> a cute little boy. Obviously the ped has told him just to

reassure

> us. He told me to pretend that this never happened and my son

will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't

matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was

2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed

it

> as moderate to sever and it hasn't changed that much since then.

I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

How frustrating Haylee. If you are truly upset about your head

shape and feel your son needs another band than I wouldn't give up.

Thirteen mos isn't too old to get good correction. Where are you

located? You need to get someone to suggest a good helmet friendly

specialist. What about that first plastic surgeon you saw who

diagnosed him? Would he write you another script? What are you

local banding options? You obviously had a bad STARband ortho, but

do you have other local options for active bands? If not, could you

use Angel Flight? You only have a small window to fix his plagio,

and you don't want to regret not doing anything, so if you still

feel he's moderate to severe I'd go w/your gut and act on it. Do

you have any current pics of his shape? Good luck and please let us

know what happens.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> We've hit another brick wall today. I feel so horrible. My son

is

> 13 months old and had 2 bad fitting STARbands. He still has a

flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks

around

> with his sholders hunched. We had an appointment with a

neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he

has

> seen. Is he saying I was lying. He said he thinks my son looks

like

> a cute little boy. Obviously the ped has told him just to

reassure

> us. He told me to pretend that this never happened and my son

will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't

matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was

2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed

it

> as moderate to sever and it hasn't changed that much since then.

I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

Hi Haylee.

My daughter is 13 months old today and just got her DOC Band about 2

weeks before her 1st birthday. We're seeing some correction but I am a

little disappointed with the progress so far. She's an older baby and

so we were prepared for this. At our next visit to Cranial Tech she

will be roughly 1/2way through treatment and they'll give us expected

final results and discuss a 2nd band. I'm heartbroken about it, but as

she's considered a low-severe brachy and moderate plagio case, I can't

be surprised. Typical for her age, her growth has slowed down. I'm

hopeful that her recent appetite indicates a growth spurt coming on.

My daughter tolerates the helmet so well but I hate putting it on her.

She has such lovely brown curly hair that is all but hidden by the

band. But I know my husband and I are doing the right thing for her

and we adhere to the 23 hrs/day treatment schedule. I was actually

dealing with it okay until I started getting comments from both

friends and strangers. People say, " she's looks like such a happy

baby... " and she is but I can't help but think they're

overcompensating and thinking there's more wrong with her than there

really is.

Try not to blame yourself. I say this knowing that I blame myself

every day for not following up sooner and researching info earlier. I

used the internet a lot when my father was diagnosed with cancer. I

don't know why I didn't do more on my own when I knew my daughter's

head & face didn't look like other babies' faces. You will get advice

to stop blaming yourself but I realize you just can't turn it off much

as you'd like to. Maybe there's some comfort knowing that there are

others out there who are feeling so guilty??

If you want to pursue the surgery option, is there someone else in

your area to consult?

I would recommend finding a Cranial Tech location. It's not invasive

like surgery would be. They are wonderful. You hate being in this

predicament but they are incredibly supportive and you see other

babies with the same problems and you don't feel so alone. Of course

they're not a support group, their focus is correction or normalizing

the appearance of your child's head and face. They will treat your

child up to 2 years. They had what I would consider fantastic results

with a 19 month old. When you call and give your baby's age, they will

do their best to fast-track your son through the banding process. My

husband and I are not expecting 100% correction, but our guilt will be

a little less difficult to bear knowing that we did everything we

could. I suggest the CT approach first. Surgery would still be an

option afterwards if you're not satfisfied with the banding results.

Hope this is helpful. Good luck.

DD Liliana 13 months old, began DOCBand 9/2/04 for approx. 16 weeks.

2nd band likely...

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

Hi Haylee.

My daughter is 13 months old today and just got her DOC Band about 2

weeks before her 1st birthday. We're seeing some correction but I am a

little disappointed with the progress so far. She's an older baby and

so we were prepared for this. At our next visit to Cranial Tech she

will be roughly 1/2way through treatment and they'll give us expected

final results and discuss a 2nd band. I'm heartbroken about it, but as

she's considered a low-severe brachy and moderate plagio case, I can't

be surprised. Typical for her age, her growth has slowed down. I'm

hopeful that her recent appetite indicates a growth spurt coming on.

My daughter tolerates the helmet so well but I hate putting it on her.

She has such lovely brown curly hair that is all but hidden by the

band. But I know my husband and I are doing the right thing for her

and we adhere to the 23 hrs/day treatment schedule. I was actually

dealing with it okay until I started getting comments from both

friends and strangers. People say, " she's looks like such a happy

baby... " and she is but I can't help but think they're

overcompensating and thinking there's more wrong with her than there

really is.

Try not to blame yourself. I say this knowing that I blame myself

every day for not following up sooner and researching info earlier. I

used the internet a lot when my father was diagnosed with cancer. I

don't know why I didn't do more on my own when I knew my daughter's

head & face didn't look like other babies' faces. You will get advice

to stop blaming yourself but I realize you just can't turn it off much

as you'd like to. Maybe there's some comfort knowing that there are

others out there who are feeling so guilty??

If you want to pursue the surgery option, is there someone else in

your area to consult?

I would recommend finding a Cranial Tech location. It's not invasive

like surgery would be. They are wonderful. You hate being in this

predicament but they are incredibly supportive and you see other

babies with the same problems and you don't feel so alone. Of course

they're not a support group, their focus is correction or normalizing

the appearance of your child's head and face. They will treat your

child up to 2 years. They had what I would consider fantastic results

with a 19 month old. When you call and give your baby's age, they will

do their best to fast-track your son through the banding process. My

husband and I are not expecting 100% correction, but our guilt will be

a little less difficult to bear knowing that we did everything we

could. I suggest the CT approach first. Surgery would still be an

option afterwards if you're not satfisfied with the banding results.

Hope this is helpful. Good luck.

DD Liliana 13 months old, began DOCBand 9/2/04 for approx. 16 weeks.

2nd band likely...

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

One more thing...

Cranial Tech told me recently that my daughter's head would always be

square-shaped. But the thing is she looks so much like her grandmother

and the shape of her head is very much like her great aunt's. So I'm

thinking that would have probably happened anyway even though my

husband's and mine are both more oval/triangular?

We can't turn back time, but some days I seriously consider having an

age-progression photo done of her from birth and another one done now

to see if the head shape was genetic or positional. As if that would

really help. I am constantly seeking ways to resolve or add on more

guilt.

~

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

One more thing...

Cranial Tech told me recently that my daughter's head would always be

square-shaped. But the thing is she looks so much like her grandmother

and the shape of her head is very much like her great aunt's. So I'm

thinking that would have probably happened anyway even though my

husband's and mine are both more oval/triangular?

We can't turn back time, but some days I seriously consider having an

age-progression photo done of her from birth and another one done now

to see if the head shape was genetic or positional. As if that would

really help. I am constantly seeking ways to resolve or add on more

guilt.

~

>

> We've hit another brick wall today. I feel so horrible. My son is

> 13 months old and had 2 bad fitting STARbands. He still has a flat

> spot, a big bump above his ear misaligned ears and what I would

> consider to be pretty bad facial assymetry. He also still has a

> preference to look only one way, has a little tilt and walks around

> with his sholders hunched. We had an appointment with a neurosurgeon

> today. He said he would consider it a mild case and said that he

> would be surprised if anyone would even notice. When I said that

> stangers notice it and say things about it he said he was really

> surprised because its not that bad compared to the other kids he has

> seen. Is he saying I was lying. He said he thinks my son looks like

> a cute little boy. Obviously the ped has told him just to reassure

> us. He told me to pretend that this never happened and my son will

> never notice. I said it looks really bad in the mirror but he

> didn't care. He was anti helmet anti repo and said it didn't matter

> what we did that it was going to be the way it was going to be. I

> feel so bad. I should have gotten a 2nd opinion back when he was 2

> months old and we saw the flat spot and neck problems. Now my son

> is going to be stuck like this forever and it is all my fault. I

> don't beleive him that it's mild. The plastic surgeon diagnosed it

> as moderate to sever and it hasn't changed that much since then. I

> wish there was a standard measurement that they used so we could

> know for sure how bad it is. I think it is pretty bad.

>

> Haylee

>

[Guest guest]

Haylee:

I don't know where you are located but perhaps if you

had that to the subject line a member from your area

can point you to a band-friendly

pediatrician/specialist. Then maybe you can get some

help. I would also try to find a pediatric physical

therapist to work on the tilt, shoulder shrug, etc.

That is tort and can pull the ears out of alignment as

well.

And you aren't stuck. There is still time for

treatment. I know you had 2 bad fitting StarBands.

Once again, I don't know where you are located but I

would try to do one of the free consults with Cranial

Tech and see what they have to say. If they are near

you, they can also give you names of band-friendly

doctors to get the prescription from.

Jack 8 1/2 months, mild tort, mod/severe plagio

DOCBand #1 6/2/05 - 7/14/05

DOCband #2 8/30/05 - and going

--- Soler <pennadutchgirl@...> wrote:

> One more thing...

> Cranial Tech told me recently that my daughter's

> head would always be

> square-shaped. But the thing is she looks so much

> like her grandmother

> and the shape of her head is very much like her

> great aunt's. So I'm

> thinking that would have probably happened anyway

> even though my

> husband's and mine are both more oval/triangular?

>

> We can't turn back time, but some days I seriously

> consider having an

> age-progression photo done of her from birth and

> another one done now

> to see if the head shape was genetic or positional.

> As if that would

> really help. I am constantly seeking ways to resolve

> or add on more

> guilt.

>

> ~

>

>

>

> >

> > We've hit another brick wall today. I feel so

> horrible. My son is

> > 13 months old and had 2 bad fitting STARbands. He

> still has a flat

> > spot, a big bump above his ear misaligned ears and

> what I would

> > consider to be pretty bad facial assymetry. He

> also still has a

> > preference to look only one way, has a little tilt

> and walks around

> > with his sholders hunched. We had an appointment

> with a neurosurgeon

> > today. He said he would consider it a mild case

> and said that he

> > would be surprised if anyone would even notice.

> When I said that

> > stangers notice it and say things about it he said

> he was really

> > surprised because its not that bad compared to the

> other kids he has

> > seen. Is he saying I was lying. He said he thinks

> my son looks like

> > a cute little boy. Obviously the ped has told him

> just to reassure

> > us. He told me to pretend that this never

> happened and my son will

> > never notice. I said it looks really bad in the

> mirror but he

> > didn't care. He was anti helmet anti repo and

> said it didn't matter

> > what we did that it was going to be the way it was

> going to be. I

> > feel so bad. I should have gotten a 2nd opinion

> back when he was 2

> > months old and we saw the flat spot and neck

> problems. Now my son

> > is going to be stuck like this forever and it is

> all my fault. I

> > don't beleive him that it's mild. The plastic

> surgeon diagnosed it

> > as moderate to sever and it hasn't changed that

> much since then. I

> > wish there was a standard measurement that they

> used so we could

> > know for sure how bad it is. I think it is pretty

> bad.

> >

> > Haylee

> >

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Haylee:

I don't know where you are located but perhaps if you

had that to the subject line a member from your area

can point you to a band-friendly

pediatrician/specialist. Then maybe you can get some

help. I would also try to find a pediatric physical

therapist to work on the tilt, shoulder shrug, etc.

That is tort and can pull the ears out of alignment as

well.

And you aren't stuck. There is still time for

treatment. I know you had 2 bad fitting StarBands.

Once again, I don't know where you are located but I

would try to do one of the free consults with Cranial

Tech and see what they have to say. If they are near

you, they can also give you names of band-friendly

doctors to get the prescription from.

Jack 8 1/2 months, mild tort, mod/severe plagio

DOCBand #1 6/2/05 - 7/14/05

DOCband #2 8/30/05 - and going

--- Soler <pennadutchgirl@...> wrote:

> One more thing...

> Cranial Tech told me recently that my daughter's

> head would always be

> square-shaped. But the thing is she looks so much

> like her grandmother

> and the shape of her head is very much like her

> great aunt's. So I'm

> thinking that would have probably happened anyway

> even though my

> husband's and mine are both more oval/triangular?

>

> We can't turn back time, but some days I seriously

> consider having an

> age-progression photo done of her from birth and

> another one done now

> to see if the head shape was genetic or positional.

> As if that would

> really help. I am constantly seeking ways to resolve

> or add on more

> guilt.

>

> ~

>

>

>

> >

> > We've hit another brick wall today. I feel so

> horrible. My son is

> > 13 months old and had 2 bad fitting STARbands. He

> still has a flat

> > spot, a big bump above his ear misaligned ears and

> what I would

> > consider to be pretty bad facial assymetry. He

> also still has a

> > preference to look only one way, has a little tilt

> and walks around

> > with his sholders hunched. We had an appointment

> with a neurosurgeon

> > today. He said he would consider it a mild case

> and said that he

> > would be surprised if anyone would even notice.

> When I said that

> > stangers notice it and say things about it he said

> he was really

> > surprised because its not that bad compared to the

> other kids he has

> > seen. Is he saying I was lying. He said he thinks

> my son looks like

> > a cute little boy. Obviously the ped has told him

> just to reassure

> > us. He told me to pretend that this never

> happened and my son will

> > never notice. I said it looks really bad in the

> mirror but he

> > didn't care. He was anti helmet anti repo and

> said it didn't matter

> > what we did that it was going to be the way it was

> going to be. I

> > feel so bad. I should have gotten a 2nd opinion

> back when he was 2

> > months old and we saw the flat spot and neck

> problems. Now my son

> > is going to be stuck like this forever and it is

> all my fault. I

> > don't beleive him that it's mild. The plastic

> surgeon diagnosed it

> > as moderate to sever and it hasn't changed that

> much since then. I

> > wish there was a standard measurement that they

> used so we could

> > know for sure how bad it is. I think it is pretty

> bad.

> >

> > Haylee

> >

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

We got in a huge fight with the first specialist because the

orthotist wanted a new one because the first one took 4 weeks to

arrive. The specialist didn't want to get a new one so somehow we

ended up getting in a huge fight and he said this was all he could

offer we could take it or leave it. So when the second helmet

didn't fit either we decided to leave it. I don't really want to go

back to him. We are in Manitoba Canada and Calgary and Edmonton said

no because of his age.

> >

> > We've hit another brick wall today. I feel so horrible. My son

> is

> > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

> around

> > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

> has

> > seen. Is he saying I was lying. He said he thinks my son looks

> like

> > a cute little boy. Obviously the ped has told him just to

> reassure

> > us. He told me to pretend that this never happened and my son

> will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was

> 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

> it

> > as moderate to sever and it hasn't changed that much since

then.

> I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

We got in a huge fight with the first specialist because the

orthotist wanted a new one because the first one took 4 weeks to

arrive. The specialist didn't want to get a new one so somehow we

ended up getting in a huge fight and he said this was all he could

offer we could take it or leave it. So when the second helmet

didn't fit either we decided to leave it. I don't really want to go

back to him. We are in Manitoba Canada and Calgary and Edmonton said

no because of his age.

> >

> > We've hit another brick wall today. I feel so horrible. My son

> is

> > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

> around

> > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

> has

> > seen. Is he saying I was lying. He said he thinks my son looks

> like

> > a cute little boy. Obviously the ped has told him just to

> reassure

> > us. He told me to pretend that this never happened and my son

> will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was

> 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

> it

> > as moderate to sever and it hasn't changed that much since

then.

> I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

I do feel so guilty. I feel guilty that we didn't get a 2nd opinion

back when he was 2 months old and we knew something was wrong. Or

any month after that. I am so mad at myself. It was my decision

but it's not me who has to suffer the consequences it's my son.

That makes this whole thing so hard to swallow. I don't know who I

blame for 2 bad fits but it just seems so unfair. We live in

Manitoba Canada but I called CT in Madison today and left a

message. I'm nervous about surgery becaus yesterdays doc said if

someone wants to do surgery we should run the other way. I don't

know how much I beleive him though. I don't know what to beleive

anymore.

Haylee

>

> Hi Haylee.

> My daughter is 13 months old today and just got her DOC Band about

2

> weeks before her 1st birthday. We're seeing some correction but I

am a

> little disappointed with the progress so far. She's an older baby

and

> so we were prepared for this. At our next visit to Cranial Tech she

> will be roughly 1/2way through treatment and they'll give us

expected

> final results and discuss a 2nd band. I'm heartbroken about it,

but as

> she's considered a low-severe brachy and moderate plagio case, I

can't

> be surprised. Typical for her age, her growth has slowed down. I'm

> hopeful that her recent appetite indicates a growth spurt coming

on.

>

> My daughter tolerates the helmet so well but I hate putting it on

her.

> She has such lovely brown curly hair that is all but hidden by the

> band. But I know my husband and I are doing the right thing for her

> and we adhere to the 23 hrs/day treatment schedule. I was actually

> dealing with it okay until I started getting comments from both

> friends and strangers. People say, " she's looks like such a happy

> baby... " and she is but I can't help but think they're

> overcompensating and thinking there's more wrong with her than

there

> really is.

>

> Try not to blame yourself. I say this knowing that I blame myself

> every day for not following up sooner and researching info

earlier. I

> used the internet a lot when my father was diagnosed with cancer. I

> don't know why I didn't do more on my own when I knew my daughter's

> head & face didn't look like other babies' faces. You will get

advice

> to stop blaming yourself but I realize you just can't turn it off

much

> as you'd like to. Maybe there's some comfort knowing that there are

> others out there who are feeling so guilty??

>

> If you want to pursue the surgery option, is there someone else in

> your area to consult?

>

> I would recommend finding a Cranial Tech location. It's not

invasive

> like surgery would be. They are wonderful. You hate being in this

> predicament but they are incredibly supportive and you see other

> babies with the same problems and you don't feel so alone. Of

course

> they're not a support group, their focus is correction or

normalizing

> the appearance of your child's head and face. They will treat your

> child up to 2 years. They had what I would consider fantastic

results

> with a 19 month old. When you call and give your baby's age, they

will

> do their best to fast-track your son through the banding process.

My

> husband and I are not expecting 100% correction, but our guilt

will be

> a little less difficult to bear knowing that we did everything we

> could. I suggest the CT approach first. Surgery would still be an

> option afterwards if you're not satfisfied with the banding

results.

>

> Hope this is helpful. Good luck.

>

> DD Liliana 13 months old, began DOCBand 9/2/04 for approx. 16

weeks.

> 2nd band likely...

>

> --- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

> >

> > We've hit another brick wall today. I feel so horrible. My son

is

> > 13 months old and had 2 bad fitting STARbands. He still has a

flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

around

> > with his sholders hunched. We had an appointment with a

neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

has

> > seen. Is he saying I was lying. He said he thinks my son looks

like

> > a cute little boy. Obviously the ped has told him just to

reassure

> > us. He told me to pretend that this never happened and my son

will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

it

> > as moderate to sever and it hasn't changed that much since

then. I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

I assume you are talking about Cranial Tech offices in

Canada right? What about the ones in Wisconsin? I

don't know how far you would have traveled for Calgary

and Edmonton but maybe those offices aren't that much

further for you? You would be going every 2 weeks so

that would cut down on travel.

--- haylee204 <rascle204@...> wrote:

> We got in a huge fight with the first specialist

> because the

> orthotist wanted a new one because the first one

> took 4 weeks to

> arrive. The specialist didn't want to get a new one

> so somehow we

> ended up getting in a huge fight and he said this

> was all he could

> offer we could take it or leave it. So when the

> second helmet

> didn't fit either we decided to leave it. I don't

> really want to go

> back to him. We are in Manitoba Canada and Calgary

> and Edmonton said

> no because of his age.

>

>

> > >

> > > We've hit another brick wall today. I feel so

> horrible. My son

> > is

> > > 13 months old and had 2 bad fitting STARbands.

> He still has a

> > flat

> > > spot, a big bump above his ear misaligned ears

> and what I would

> > > consider to be pretty bad facial assymetry. He

> also still has a

> > > preference to look only one way, has a little

> tilt and walks

> > around

> > > with his sholders hunched. We had an appointment

> with a

> > neurosurgeon

> > > today. He said he would consider it a mild case

> and said that

> he

> > > would be surprised if anyone would even notice.

> When I said that

> > > stangers notice it and say things about it he

> said he was really

> > > surprised because its not that bad compared to

> the other kids he

> > has

> > > seen. Is he saying I was lying. He said he

> thinks my son looks

> > like

> > > a cute little boy. Obviously the ped has told

> him just to

> > reassure

> > > us. He told me to pretend that this never

> happened and my son

> > will

> > > never notice. I said it looks really bad in the

> mirror but he

> > > didn't care. He was anti helmet anti repo and

> said it didn't

> > matter

> > > what we did that it was going to be the way it

> was going to be.

> I

> > > feel so bad. I should have gotten a 2nd opinion

> back when he

> was

> > 2

> > > months old and we saw the flat spot and neck

> problems. Now my

> son

> > > is going to be stuck like this forever and it is

> all my fault.

> I

> > > don't beleive him that it's mild. The plastic

> surgeon diagnosed

> > it

> > > as moderate to sever and it hasn't changed that

> much since

> then.

> > I

> > > wish there was a standard measurement that they

> used so we could

> > > know for sure how bad it is. I think it is

> pretty bad.

> > >

> > > Haylee

> > >

> >

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

I do feel so guilty. I feel guilty that we didn't get a 2nd opinion

back when he was 2 months old and we knew something was wrong. Or

any month after that. I am so mad at myself. It was my decision

but it's not me who has to suffer the consequences it's my son.

That makes this whole thing so hard to swallow. I don't know who I

blame for 2 bad fits but it just seems so unfair. We live in

Manitoba Canada but I called CT in Madison today and left a

message. I'm nervous about surgery becaus yesterdays doc said if

someone wants to do surgery we should run the other way. I don't

know how much I beleive him though. I don't know what to beleive

anymore.

Haylee

>

> Hi Haylee.

> My daughter is 13 months old today and just got her DOC Band about

2

> weeks before her 1st birthday. We're seeing some correction but I

am a

> little disappointed with the progress so far. She's an older baby

and

> so we were prepared for this. At our next visit to Cranial Tech she

> will be roughly 1/2way through treatment and they'll give us

expected

> final results and discuss a 2nd band. I'm heartbroken about it,

but as

> she's considered a low-severe brachy and moderate plagio case, I

can't

> be surprised. Typical for her age, her growth has slowed down. I'm

> hopeful that her recent appetite indicates a growth spurt coming

on.

>

> My daughter tolerates the helmet so well but I hate putting it on

her.

> She has such lovely brown curly hair that is all but hidden by the

> band. But I know my husband and I are doing the right thing for her

> and we adhere to the 23 hrs/day treatment schedule. I was actually

> dealing with it okay until I started getting comments from both

> friends and strangers. People say, " she's looks like such a happy

> baby... " and she is but I can't help but think they're

> overcompensating and thinking there's more wrong with her than

there

> really is.

>

> Try not to blame yourself. I say this knowing that I blame myself

> every day for not following up sooner and researching info

earlier. I

> used the internet a lot when my father was diagnosed with cancer. I

> don't know why I didn't do more on my own when I knew my daughter's

> head & face didn't look like other babies' faces. You will get

advice

> to stop blaming yourself but I realize you just can't turn it off

much

> as you'd like to. Maybe there's some comfort knowing that there are

> others out there who are feeling so guilty??

>

> If you want to pursue the surgery option, is there someone else in

> your area to consult?

>

> I would recommend finding a Cranial Tech location. It's not

invasive

> like surgery would be. They are wonderful. You hate being in this

> predicament but they are incredibly supportive and you see other

> babies with the same problems and you don't feel so alone. Of

course

> they're not a support group, their focus is correction or

normalizing

> the appearance of your child's head and face. They will treat your

> child up to 2 years. They had what I would consider fantastic

results

> with a 19 month old. When you call and give your baby's age, they

will

> do their best to fast-track your son through the banding process.

My

> husband and I are not expecting 100% correction, but our guilt

will be

> a little less difficult to bear knowing that we did everything we

> could. I suggest the CT approach first. Surgery would still be an

> option afterwards if you're not satfisfied with the banding

results.

>

> Hope this is helpful. Good luck.

>

> DD Liliana 13 months old, began DOCBand 9/2/04 for approx. 16

weeks.

> 2nd band likely...

>

> --- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

> >

> > We've hit another brick wall today. I feel so horrible. My son

is

> > 13 months old and had 2 bad fitting STARbands. He still has a

flat

> > spot, a big bump above his ear misaligned ears and what I would

> > consider to be pretty bad facial assymetry. He also still has a

> > preference to look only one way, has a little tilt and walks

around

> > with his sholders hunched. We had an appointment with a

neurosurgeon

> > today. He said he would consider it a mild case and said that

he

> > would be surprised if anyone would even notice. When I said that

> > stangers notice it and say things about it he said he was really

> > surprised because its not that bad compared to the other kids he

has

> > seen. Is he saying I was lying. He said he thinks my son looks

like

> > a cute little boy. Obviously the ped has told him just to

reassure

> > us. He told me to pretend that this never happened and my son

will

> > never notice. I said it looks really bad in the mirror but he

> > didn't care. He was anti helmet anti repo and said it didn't

matter

> > what we did that it was going to be the way it was going to be.

I

> > feel so bad. I should have gotten a 2nd opinion back when he

was 2

> > months old and we saw the flat spot and neck problems. Now my

son

> > is going to be stuck like this forever and it is all my fault.

I

> > don't beleive him that it's mild. The plastic surgeon diagnosed

it

> > as moderate to sever and it hasn't changed that much since

then. I

> > wish there was a standard measurement that they used so we could

> > know for sure how bad it is. I think it is pretty bad.

> >

> > Haylee

> >

>

[Guest guest]

I assume you are talking about Cranial Tech offices in

Canada right? What about the ones in Wisconsin? I

don't know how far you would have traveled for Calgary

and Edmonton but maybe those offices aren't that much

further for you? You would be going every 2 weeks so

that would cut down on travel.

--- haylee204 <rascle204@...> wrote:

> We got in a huge fight with the first specialist

> because the

> orthotist wanted a new one because the first one

> took 4 weeks to

> arrive. The specialist didn't want to get a new one

> so somehow we

> ended up getting in a huge fight and he said this

> was all he could

> offer we could take it or leave it. So when the

> second helmet

> didn't fit either we decided to leave it. I don't

> really want to go

> back to him. We are in Manitoba Canada and Calgary

> and Edmonton said

> no because of his age.

>

>

> > >

> > > We've hit another brick wall today. I feel so

> horrible. My son

> > is

> > > 13 months old and had 2 bad fitting STARbands.

> He still has a

> > flat

> > > spot, a big bump above his ear misaligned ears

> and what I would

> > > consider to be pretty bad facial assymetry. He

> also still has a

> > > preference to look only one way, has a little

> tilt and walks

> > around

> > > with his sholders hunched. We had an appointment

> with a

> > neurosurgeon

> > > today. He said he would consider it a mild case

> and said that

> he

> > > would be surprised if anyone would even notice.

> When I said that

> > > stangers notice it and say things about it he

> said he was really

> > > surprised because its not that bad compared to

> the other kids he

> > has

> > > seen. Is he saying I was lying. He said he

> thinks my son looks

> > like

> > > a cute little boy. Obviously the ped has told

> him just to

> > reassure

> > > us. He told me to pretend that this never

> happened and my son

> > will

> > > never notice. I said it looks really bad in the

> mirror but he

> > > didn't care. He was anti helmet anti repo and

> said it didn't

> > matter

> > > what we did that it was going to be the way it

> was going to be.

> I

> > > feel so bad. I should have gotten a 2nd opinion

> back when he

> was

> > 2

> > > months old and we saw the flat spot and neck

> problems. Now my

> son

> > > is going to be stuck like this forever and it is

> all my fault.

> I

> > > don't beleive him that it's mild. The plastic

> surgeon diagnosed

> > it

> > > as moderate to sever and it hasn't changed that

> much since

> then.

> > I

> > > wish there was a standard measurement that they

> used so we could

> > > know for sure how bad it is. I think it is

> pretty bad.

> > >

> > > Haylee

> > >

> >

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Oh Haley what a mess!! My daughter rec'd 2 ill fitting STARBands to

which we didn't walk out the door with either one of them. I would

really look into Angel Flight to see if someone else would band

him. 13 months is certainly not too old for treatment.

I wish you the best of luck!! Please keep us posted.

Dustie, mom to , DOCGRad'03

> > >

> > > We've hit another brick wall today. I feel so horrible. My

son

> > is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> > flat

> > > spot, a big bump above his ear misaligned ears and what I

would

> > > consider to be pretty bad facial assymetry. He also still has

a

> > > preference to look only one way, has a little tilt and walks

> > around

> > > with his sholders hunched. We had an appointment with a

> > neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said

that

> > > stangers notice it and say things about it he said he was

really

> > > surprised because its not that bad compared to the other kids

he

> > has

> > > seen. Is he saying I was lying. He said he thinks my son

looks

> > like

> > > a cute little boy. Obviously the ped has told him just to

> > reassure

> > > us. He told me to pretend that this never happened and my son

> > will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> > matter

> > > what we did that it was going to be the way it was going to

be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was

> > 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my

fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon

diagnosed

> > it

> > > as moderate to sever and it hasn't changed that much since

> then.

> > I

> > > wish there was a standard measurement that they used so we

could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Oh Haley what a mess!! My daughter rec'd 2 ill fitting STARBands to

which we didn't walk out the door with either one of them. I would

really look into Angel Flight to see if someone else would band

him. 13 months is certainly not too old for treatment.

I wish you the best of luck!! Please keep us posted.

Dustie, mom to , DOCGRad'03

> > >

> > > We've hit another brick wall today. I feel so horrible. My

son

> > is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> > flat

> > > spot, a big bump above his ear misaligned ears and what I

would

> > > consider to be pretty bad facial assymetry. He also still has

a

> > > preference to look only one way, has a little tilt and walks

> > around

> > > with his sholders hunched. We had an appointment with a

> > neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said

that

> > > stangers notice it and say things about it he said he was

really

> > > surprised because its not that bad compared to the other kids

he

> > has

> > > seen. Is he saying I was lying. He said he thinks my son

looks

> > like

> > > a cute little boy. Obviously the ped has told him just to

> > reassure

> > > us. He told me to pretend that this never happened and my son

> > will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> > matter

> > > what we did that it was going to be the way it was going to

be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was

> > 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my

fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon

diagnosed

> > it

> > > as moderate to sever and it hasn't changed that much since

> then.

> > I

> > > wish there was a standard measurement that they used so we

could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

I'm in Columbia, MD now but I lived in Madison for almost three years.

It's a great place for medicine! I am sure the CT people will be most

encouraging. There's a reasonably priced there that's

close to UW Hospital. The university seems to be on the leading edge

in a lot of areas. I bet it wouldn't be hard to find a band-friendly

specialist there.

I'd be disappointed too if I had pursued treatment so early on and

gotten two bad fittings. At this point though you won't have to worry

about your son sdjusting to another band.

I'd also be concerned about a surgeon willing to operate on your baby

who's still so young to start manipulating his features. Just my two

cents. My daughter's facial assymmetry is not too bad but definitely

still noticeable. Her hair is starting to cover the flatness of the

back and right side but now I am more concerned about the size of her

eyes evening out even though the measurements suggest that's the least

worrisome part of her abnormal head shape. The face is the point of

person-person communication so I understand your worry.

Yes, my guilt continues. We could have had earlier treatment for less

time with better results. My husband says we're doing the best we can

now... and on the grand scheme of things, we have so much more to be

happy for. Really, I try to re-direct my thoughts to this and be

thankful. It's still hard but I try.

~

> > >

> > > We've hit another brick wall today. I feel so horrible. My son

> is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > > spot, a big bump above his ear misaligned ears and what I would

> > > consider to be pretty bad facial assymetry. He also still has a

> > > preference to look only one way, has a little tilt and walks

> around

> > > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said that

> > > stangers notice it and say things about it he said he was really

> > > surprised because its not that bad compared to the other kids he

> has

> > > seen. Is he saying I was lying. He said he thinks my son looks

> like

> > > a cute little boy. Obviously the ped has told him just to

> reassure

> > > us. He told me to pretend that this never happened and my son

> will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > > what we did that it was going to be the way it was going to be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon diagnosed

> it

> > > as moderate to sever and it hasn't changed that much since

> then. I

> > > wish there was a standard measurement that they used so we could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

I'm in Columbia, MD now but I lived in Madison for almost three years.

It's a great place for medicine! I am sure the CT people will be most

encouraging. There's a reasonably priced there that's

close to UW Hospital. The university seems to be on the leading edge

in a lot of areas. I bet it wouldn't be hard to find a band-friendly

specialist there.

I'd be disappointed too if I had pursued treatment so early on and

gotten two bad fittings. At this point though you won't have to worry

about your son sdjusting to another band.

I'd also be concerned about a surgeon willing to operate on your baby

who's still so young to start manipulating his features. Just my two

cents. My daughter's facial assymmetry is not too bad but definitely

still noticeable. Her hair is starting to cover the flatness of the

back and right side but now I am more concerned about the size of her

eyes evening out even though the measurements suggest that's the least

worrisome part of her abnormal head shape. The face is the point of

person-person communication so I understand your worry.

Yes, my guilt continues. We could have had earlier treatment for less

time with better results. My husband says we're doing the best we can

now... and on the grand scheme of things, we have so much more to be

happy for. Really, I try to re-direct my thoughts to this and be

thankful. It's still hard but I try.

~

> > >

> > > We've hit another brick wall today. I feel so horrible. My son

> is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > > spot, a big bump above his ear misaligned ears and what I would

> > > consider to be pretty bad facial assymetry. He also still has a

> > > preference to look only one way, has a little tilt and walks

> around

> > > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said that

> > > stangers notice it and say things about it he said he was really

> > > surprised because its not that bad compared to the other kids he

> has

> > > seen. Is he saying I was lying. He said he thinks my son looks

> like

> > > a cute little boy. Obviously the ped has told him just to

> reassure

> > > us. He told me to pretend that this never happened and my son

> will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > > what we did that it was going to be the way it was going to be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon diagnosed

> it

> > > as moderate to sever and it hasn't changed that much since

> then. I

> > > wish there was a standard measurement that they used so we could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Haylee,

We just started going to the Milwaukee office of CT. If it soesn't

work out w/ the Madison office, try Milwaukee. They are super

friendly & knowlegeable. We've been pleased with them so far.

> > >

> > > We've hit another brick wall today. I feel so horrible. My

son

> is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > > spot, a big bump above his ear misaligned ears and what I

would

> > > consider to be pretty bad facial assymetry. He also still has

a

> > > preference to look only one way, has a little tilt and walks

> around

> > > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said

that

> > > stangers notice it and say things about it he said he was

really

> > > surprised because its not that bad compared to the other kids

he

> has

> > > seen. Is he saying I was lying. He said he thinks my son

looks

> like

> > > a cute little boy. Obviously the ped has told him just to

> reassure

> > > us. He told me to pretend that this never happened and my son

> will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > > what we did that it was going to be the way it was going to

be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my

fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon

diagnosed

> it

> > > as moderate to sever and it hasn't changed that much since

> then. I

> > > wish there was a standard measurement that they used so we

could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Haylee,

We just started going to the Milwaukee office of CT. If it soesn't

work out w/ the Madison office, try Milwaukee. They are super

friendly & knowlegeable. We've been pleased with them so far.

> > >

> > > We've hit another brick wall today. I feel so horrible. My

son

> is

> > > 13 months old and had 2 bad fitting STARbands. He still has a

> flat

> > > spot, a big bump above his ear misaligned ears and what I

would

> > > consider to be pretty bad facial assymetry. He also still has

a

> > > preference to look only one way, has a little tilt and walks

> around

> > > with his sholders hunched. We had an appointment with a

> neurosurgeon

> > > today. He said he would consider it a mild case and said that

> he

> > > would be surprised if anyone would even notice. When I said

that

> > > stangers notice it and say things about it he said he was

really

> > > surprised because its not that bad compared to the other kids

he

> has

> > > seen. Is he saying I was lying. He said he thinks my son

looks

> like

> > > a cute little boy. Obviously the ped has told him just to

> reassure

> > > us. He told me to pretend that this never happened and my son

> will

> > > never notice. I said it looks really bad in the mirror but he

> > > didn't care. He was anti helmet anti repo and said it didn't

> matter

> > > what we did that it was going to be the way it was going to

be.

> I

> > > feel so bad. I should have gotten a 2nd opinion back when he

> was 2

> > > months old and we saw the flat spot and neck problems. Now my

> son

> > > is going to be stuck like this forever and it is all my

fault.

> I

> > > don't beleive him that it's mild. The plastic surgeon

diagnosed

> it

> > > as moderate to sever and it hasn't changed that much since

> then. I

> > > wish there was a standard measurement that they used so we

could

> > > know for sure how bad it is. I think it is pretty bad.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Haylee, I hate to hear that you've had this trouble with the STARbands

and with your Dr.s not being very compassionate about this subject!

I'm glad to see that you contacted CT because they could still band

him at his age....it's not too late. Yes the correction might be a

little slower now that he's a little older, but you will still see

some improvements at his age. I wish you all the best!! BIG HUGS TO YOU!

Lacy

Waydon DOCgrad

> > > >

> > > > We've hit another brick wall today. I feel so horrible. My

> son

> > is

> > > > 13 months old and had 2 bad fitting STARbands. He still has a

> > flat

> > > > spot, a big bump above his ear misaligned ears and what I

> would

> > > > consider to be pretty bad facial assymetry. He also still has

> a

> > > > preference to look only one way, has a little tilt and walks

> > around

> > > > with his sholders hunched. We had an appointment with a

> > neurosurgeon

> > > > today. He said he would consider it a mild case and said that

> > he

> > > > would be surprised if anyone would even notice. When I said

> that

> > > > stangers notice it and say things about it he said he was

> really

> > > > surprised because its not that bad compared to the other kids

> he

> > has

> > > > seen. Is he saying I was lying. He said he thinks my son

> looks

> > like

> > > > a cute little boy. Obviously the ped has told him just to

> > reassure

> > > > us. He told me to pretend that this never happened and my son

> > will

> > > > never notice. I said it looks really bad in the mirror but he

> > > > didn't care. He was anti helmet anti repo and said it didn't

> > matter

> > > > what we did that it was going to be the way it was going to

> be.

> > I

> > > > feel so bad. I should have gotten a 2nd opinion back when he

> > was 2

> > > > months old and we saw the flat spot and neck problems. Now my

> > son

> > > > is going to be stuck like this forever and it is all my

> fault.

> > I

> > > > don't beleive him that it's mild. The plastic surgeon

> diagnosed

> > it

> > > > as moderate to sever and it hasn't changed that much since

> > then. I

> > > > wish there was a standard measurement that they used so we

> could

> > > > know for sure how bad it is. I think it is pretty bad.

> > > >

> > > > Haylee

> > > >

> > >

> >

>