Re: choosing not to use helmet or band

[Guest guest]

Hi- we are in the same boat- our 7mo has moderate plagio and torticollis. we

just started the PT for the torticollis but are having doubts about the helmet

(starband). The orthotist of course is pushing and telling us that

repositioning at this point is a waste and we would not see any improvement.

HELP!!!

-- In Plagiocephaly , " valleley1 " <valleley1@...> wrote:

>

> I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

>

[Guest guest]

Hello,

My friend's son (who is now 9 years old) had mild to moderate brachy when he was

a baby. She said his flat head use to bother her, but she didn't realize that

banding him was an option. To be fair, I don't think banding children back then

was as common. Anyhow, she just left nature run its course and his head is

fine. She said that once his hair grew in it became less noticeable (around 2)

and then at around 3-4 years she didn't see any flat spots in the back.

If you don't band your kid it doesn't mean s/he's not going to get into an Ivy

league college or even get a date. I'm now OBSESSED with looking at people's

head shapes and notice plenty of adults with flatter heads. Honestly, I don't

think I ever would have noticed flat head unless we hadn't been through this

entire experience with my son. In fact, I recall an ex boyfriend having a

rather flat head

I guess the question you need to ask yourself is that if your kid's head stays

as is and doesn't round out are you OK with that. My kid has severe brachy and

I am not OK with his head shape, so he'll be receiving his STARband June 1.

I know it's a tough decision but I think you need to go with your gut instinct.

Mother of Cale – 4 months old and receiving his STARband June 1

> >

> > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> >

>

[Guest guest]

hi! i have chosen not to band my 9 month son. you will not get much positive

feedback from people who chose not to band here, because i think those who

didn't band and didn't have a negetive outcome just don't stay in touch with

these groups. it's pretty one-sided here. i have seen improvement with my son's

mild-mod case, having done repo, pt for tort, and cst. i would say he's in the

mild range, and still changing. i definitely understand why people with more

severe cases choose to band, but for our family i didn't think the possibility

of him maybe getting teased for it in the future was worth the helmet and all

that goes with it. i will be extra cautious of his self esteem and make sure he

has the tools to be proud of his body no matter what. i know that the teasing my

brother and i received as children only led us to be stronger, nicer, more

self-determined people. plus i do think his case is mild enough that some hair

will hide it. kids tease- if it's not about his head they will find something

else. although very helpful and informative, plagio groups are very pro helmet

and can be biased, so i have found it difficult to get much feedback from those

who are going the route our family has chosen. though we are not banding we

still want to stay informed concerning plagio and tort. i started a group on

babycenter called " plagio parents did not helmet " , just to get a less one-sided

conversation going. there's not much activity yet, but check it out if you want.

best wishes!

> > >

> > > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> > >

> >

>

[Guest guest]

> > >

> > > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> > >

> >

>hi! i have chosen not to band my 9 month son. you will not get much positive

feedback from people who chose not to band here, because i think those who

didn't band and didn't have a negetive outcome just don't stay in touch with

these groups. it's pretty one-sided here. i have seen improvement with my son's

mild-mod case, having done repo, pt for tort, and cst. i would say he's in the

mild range, and still changing. i definitely understand why people with more

severe cases choose to band, but for our family i didn't think the possibility

of him maybe getting teased for it in the future was worth the helmet and all

that goes with it. i will be extra cautious of his self esteem and make sure he

has the tools to be proud of his body no matter what. i know that the teasing my

brother and i received as children only led us to be stronger, nicer, more

self-determined people. plus i do think his case is mild enough that some hair

will hide it. kids tease- if it's not about his head they will find something

else. although very helpful and informative, plagio groups are very pro helmet

and can be biased, so i have found it difficult to get much feedback from those

who are going the route our family has chosen. though we are not banding we

still want to stay informed concerning plagio and tort. i started a group on

babycenter called " plagio parents did not helmet " , just to get a less one-sided

conversation going. there's not much activity yet, but check it out if you want.

best wishes!

[Guest guest]

Hi...I am in the same boat also. My daughter is 9mths and has moderate plagio

and tort. Last week I had a visit with her Pedi and she told me that her head

looks alot better then when she first notice it at her 6mts appt.

I have notice that it has gotten better now that she can can sit up, stand and

crawl on her own. The only time she on her head is when she is sleeping. Also,

now that she can move so much sometimes when she is sleeping I find her on her

belly. I still reposition her at night and I still do her daily stretches. They

did they me when I first got her head scanned that the helmet would be cosmetic.

It's really up to you and how you feel.

> >

> > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> >

>

[Guest guest]

I forgot to mention in my post below (under mcdietrich1979) that my son's plagio actually got better with repo. However his brachy got worse... that's why we are getting a helmet. Repo does work in some cases!

Here's how his head started out – flatter on the right side:

http://www.flickr.com/photos/sandyrat/3406813981/

Here's how it looked after a week of repo – always positioned him on his left side:

http://www.flickr.com/photos/sandyrat/3425872096/

Now his head is almost totally symmetrical (don't have a recent pic) according to his recent STARscan a couple days ago. However, the back is still flat as a pancake.

I honestly believe that you need to do what's best for YOUR family. If that's choosing not to band your kid (or in the opposite case banding your kid) then that's the best decision.

Good luck.

From: dustypages23 <dustypages23@...>Plagiocephaly Sent: Thursday, May 21, 2009 11:32:26 AMSubject: Re: choosing not to use helmet or band

hi! i have chosen not to band my 9 month son. you will not get much positive feedback from people who chose not to band here, because i think those who didn't band and didn't have a negetive outcome just don't stay in touch with these groups. it's pretty one-sided here. i have seen improvement with my son's mild-mod case, having done repo, pt for tort, and cst. i would say he's in the mild range, and still changing. i definitely understand why people with more severe cases choose to band, but for our family i didn't think the possibility of him maybe getting teased for it in the future was worth the helmet and all that goes with it. i will be extra cautious of his self esteem and make sure he has the tools to be proud of his body no matter what. i know that the teasing my brother and i received as children only led us to be stronger, nicer, more self-determined people. plus i do think his case is mild enough that some hair will hide it. kids

tease- if it's not about his head they will find something else. although very helpful and informative, plagio groups are very pro helmet and can be biased, so i have found it difficult to get much feedback from those who are going the route our family has chosen. though we are not banding we still want to stay informed concerning plagio and tort. i started a group on babycenter called "plagio parents did not helmet", just to get a less one-sided conversation going. there's not much activity yet, but check it out if you want. best wishes! > > >> > > I would like to hear from anyone who has had an infant with mild/mod positional plagiocephaly and torticollis who chose not to do the helmet or remodeling. Specifically, after repositioning and infant learning to sit up, rollover etc, did you feel their head to resolve or at least to a point that it was mild? if so how long did this take? 2 years? or did you regret not doing the orthotic therapy. We have a 7 month old that helmet clinic told us "well,hmmm.. .guess i would do it if you are going to worry about him getting teased" with no "technical measurements of head" just eyeball and experience looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does surgical cranial remodeling) and our pediatrician both think he will be fine without it. We know it's best to treat young

with helmet and we just don't want to miss the window of treatment. Obviously not much data out there about people who choose not to treat. Any help/comments would be appreciated.> > >> >>

[Guest guest]

I'm curious if the helmet clinic did actual measurements on your kiddo's head or

was it like our clinic and " experience " dictates it? That is the problem I have

with it, I will do the helmet if it is truly necessary (anything for your kid,

right?!) but if it will really be mild by the time he is 3 or so and only we

will be the ones noticing it (cuz we have stared at it so much) I hate to put

him through the time of a hot sweaty helmet plus our $3500 cost (insurance

denied, of course). Did you get any other medical opinions?

> >

> > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> >

>

[Guest guest]

we have decided to go ahead with the helmet (starband). i guess we felt there

is more of a guarantee with the helmet to achieve results than not...we dont

want to have any regrets later wondering if we could have done more or waste any

time. we are schedule to pick up the helmet on June 2nd. My son definitely

has assymetrical face- his ears are definitely different -his right face is flat

and his left is more chiseled... I really hope we are making the right choice.

I am confident about the PT just not the helmet.

> > >

> > > I would like to hear from anyone who has had an infant with mild/mod

positional plagiocephaly and torticollis who chose not to do the helmet or

remodeling. Specifically, after repositioning and infant learning to sit up,

rollover etc, did you feel their head to resolve or at least to a point that it

was mild? if so how long did this take? 2 years? or did you regret not doing the

orthotic therapy. We have a 7 month old that helmet clinic told us

" well,hmmm...guess i would do it if you are going to worry about him getting

teased " with no " technical measurements of head " just eyeball and experience

looking at kids with plagiocephaly. A neurosurgoeon whom I work with (and does

surgical cranial remodeling) and our pediatrician both think he will be fine

without it. We know it's best to treat young with helmet and we just don't want

to miss the window of treatment. Obviously not much data out there about people

who choose not to treat. Any help/comments would be appreciated.

> > >

> >

>