Re: new here and not sure yet if DD needs a helmet...

[Guest guest]

Hi !

Welcome! My son is/was considered a " severe " case, and we never

questioned it - we pretty much knew from the time he was two months

old that he'd need a helmet. We didn't want to do it either, but

it's been five weeks and I can't believe it's gone by so fast! It

really hasn't bothered him at ALL - he sleeps totally fine with it on

and he's still the same easygoing happy baby that he was before he

started wearing it...

If you're on the fence and not really sure if you want to go ahead

with banding or not, maybe join the " Older Plagio " group -

there are a few good pics there of kids that were never banded, and

it might be helpful for you to see what kids look like at a few years

old versus just seeing babies that have and haven't been banded.

It's not as " busy " of a board as this one, but the parents on that

board might be a helpful resource to you...

Good luck!!!

Jess

Mom to Luke - 5.5 months old - 5 weeks in DOC Band

Mom to JT - 2 yrs old - beautiful, " naturally " round head!

[Guest guest]

Hello and welcome to the group. Our specialist (cranio facial plastic

surgeon) used the guideline that 10mm or more of asymmetry should be

banded. I think I would definitely band at 10 mm, and maybe a little

lower based on the appearance. With facial asymmetry I would lead

toward banding. It is really not that bad once you get started, and

results are visible vs. the " wait and see what happens when they are

older " that worries us all.

My side of the family was supportive of the band, buy my BIL and SIL

didn't think it was needed. However they were pretty good once it was

on. Don't worry what they say, you know what is best for her.

Please let u know how your doctor visit goes.

-christine

sydney, almost 3 yrs, starband grad

>

> hello everyone! i first want to say i'm so thankful for this group!

> i've browsed through past messages and the files and database, and

> it's already answered so many of my questions. thank you!

>

> so, my younger daughter (maggie, 5.5 months old) had a moderate case

> of torticollis (caused by an ear to shoulder position in utero). she's

> been in physical therapy since she was 3 months old and has done

> wonderfully, the tilt is almost gone (just returns when she's tired).

>

> however, the PT said she thought her plagiocephaly was borderline and

> that we should see a specialist. she had some mild (i thought)

> flattening, but it really hasn't improved at all (maybe mildly? i SO

> wish i had taken pictures at 2 months old). i got a second opinion

> from a PT friend and he agreed, borderline. so we're going to see the

> pediatrician on monday for a referral to a cranio-facial specialist.

>

> i have a few questions though. has anyone here been a borderline case

> and not gotten a helmet? or been a borderline case and gotten one? how

> did you make a decision? any special questions i should ask?

>

> also, i've made the mistake of telling family, and they are all

> telling me that she looks fine, everyone has some asymmetry, etc. does

> everyone get this from family? i obviously don't WANT her in a helmet,

> but i don't want her to have more asymmetry in her face than she

> should have, you know? what do you tell people who don't see the

> asymmetry ad think you're doing it for no good reason?

>

> thanks so much everyone, it's really nice to have this group!

>

> -desiree, mom to nina (3) and maggie (5.5 months)

>

[Guest guest]

oh another thing that the clinician said to me was that if you think your going to have any regrets later on in your childs life it is better to do it so you know you did what you could to fix the problem

heather

From: jsydney07 <jsydney07@...>Subject: Re: new here and not sure yet if DD needs a helmet...Plagiocephaly Date: Sunday, November 9, 2008, 5:58 PM

Hi !Welcome! My son is/was considered a "severe" case, and we never questioned it - we pretty much knew from the time he was two months old that he'd need a helmet. We didn't want to do it either, but it's been five weeks and I can't believe it's gone by so fast! It really hasn't bothered him at ALL - he sleeps totally fine with it on and he's still the same easygoing happy baby that he was before he started wearing it...If you're on the fence and not really sure if you want to go ahead with banding or not, maybe join the "Older Plagio" group - there are a few good pics there of kids that were never banded, and it might be helpful for you to see what kids look like at a few years old versus just seeing babies that have and haven't been banded. It's not as "busy" of a board as this one, but the parents on that board might be a helpful resource to you... Good luck!!!

JessMom to Luke - 5.5 months old - 5 weeks in DOC BandMom to JT - 2 yrs old - beautiful, "naturally" round head!

[Guest guest]

hello, I am mom of who was diag. with tort and plagio in one day then banded about six weeks later. He is doing well but looking back I realize that I wasn't even asked which kind I wanted to do...etc. .. He does have facial asym. and my WHOLE family just about lost their minds. Which by the way was hysterical since some have not even met him yet. I am glad you are here and hope that you'll be able to tune out the naysayers. I am still reminding myself that they do this only because they are far away and they don't know how to help in an appropriate way. Thankfully the most hurtful comments came from non family. If there is anything I can do please send me an e-mail

From: christineashok <christineashok@...>Plagiocephaly Sent: Sunday, November 9, 2008 5:01:21 PMSubject: Re: new here and not sure yet if DD needs a helmet...

Hello and welcome to the group. Our specialist (cranio facial plasticsurgeon) used the guideline that 10mm or more of asymmetry should bebanded. I think I would definitely band at 10 mm, and maybe a littlelower based on the appearance. With facial asymmetry I would leadtoward banding. It is really not that bad once you get started, andresults are visible vs. the "wait and see what happens when they areolder" that worries us all. My side of the family was supportive of the band, buy my BIL and SILdidn't think it was needed. However they were pretty good once it wason. Don't worry what they say, you know what is best for her. Please let u know how your doctor visit goes.-christinesydney, almost 3 yrs, starband grad>> hello everyone! i first want to say i'm so thankful for this group!> i've browsed through past messages and the files and database, and> it's already answered so many of my questions. thank you!> > so, my younger daughter (maggie, 5.5 months old) had a moderate case> of torticollis (caused by an ear to shoulder position in utero). she's> been in physical therapy since she was 3 months old and has done> wonderfully, the tilt is almost gone (just returns when she's tired). > > however, the PT said she thought her plagiocephaly was borderline and> that we should see a specialist. she had some mild (i thought)> flattening, but it really hasn't improved at all (maybe mildly? i SO> wish i had taken pictures at 2 months old). i got a second opinion> from a PT friend and he agreed, borderline. so

we're going to see the> pediatrician on monday for a referral to a cranio-facial specialist.> > i have a few questions though. has anyone here been a borderline case> and not gotten a helmet? or been a borderline case and gotten one? how> did you make a decision? any special questions i should ask?> > also, i've made the mistake of telling family, and they are all> telling me that she looks fine, everyone has some asymmetry, etc. does> everyone get this from family? i obviously don't WANT her in a helmet,> but i don't want her to have more asymmetry in her face than she> should have, you know? what do you tell people who don't see the> asymmetry ad think you're doing it for no good reason?> > thanks so much everyone, it's really nice to have this group!> > -desiree, mom to nina (3) and maggie (5.5

months)>

[Guest guest]

Hi --

You are brave to tell your family! I haven't done that--but they live

far away, and I thought it best just to do this under the radar.

Hopefully your family can provide support to you in whatever you

decide--it is your decision--not theirs, and it is their job to

support your decision.

I always found it difficult when friends would say 'he looks fine, I

don't see ,it.' At first I would feel better, but then when I thought

about it and listened to my inner voice, I had to let those comments

go because 'I' could see it. People want to be helpful and they may

not know what they are exactly looking for. To be honest, I didn't

see the plagio until our pediatrician pointed it out and then CT took

photos and explained exactly what I was looking at. Now I CANNOT

believe I didn't see it. Ultimatly you will need to decide if you are

okay with the way your LOs head is. If you are 100% fine with it,

then okay. But if you are not, then you might ask yourself what you

would have to lose by trying banding. I was so sickened initially at

the thought of banding, and here we are two days in, and I am so

happy to have the option to correct this. I also found it very

helpful to go to boards where adults with plagio have posted. For

many of them if they could go back in time to spend a few months in a

band in order to save the hurt that they experienced in life, it

would be an easy decision.

Keep us posted,

Merrick, 4-months, 11mm plagio, 2 days in band

>

> hello everyone! i first want to say i'm so thankful for this group!

> i've browsed through past messages and the files and database, and

> it's already answered so many of my questions. thank you!

>

> so, my younger daughter (maggie, 5.5 months old) had a moderate case

> of torticollis (caused by an ear to shoulder position in utero).

she's

> been in physical therapy since she was 3 months old and has done

> wonderfully, the tilt is almost gone (just returns when she's

tired).

>

> however, the PT said she thought her plagiocephaly was borderline

and

> that we should see a specialist. she had some mild (i thought)

> flattening, but it really hasn't improved at all (maybe mildly? i SO

> wish i had taken pictures at 2 months old). i got a second opinion

> from a PT friend and he agreed, borderline. so we're going to see

the

> pediatrician on monday for a referral to a cranio-facial specialist.

>

> i have a few questions though. has anyone here been a borderline

case

> and not gotten a helmet? or been a borderline case and gotten one?

how

> did you make a decision? any special questions i should ask?

>

> also, i've made the mistake of telling family, and they are all

> telling me that she looks fine, everyone has some asymmetry, etc.

does

> everyone get this from family? i obviously don't WANT her in a

helmet,

> but i don't want her to have more asymmetry in her face than she

> should have, you know? what do you tell people who don't see the

> asymmetry ad think you're doing it for no good reason?

>

> thanks so much everyone, it's really nice to have this group!

>

> -desiree, mom to nina (3) and maggie (5.5 months)

>

[Guest guest]

everyone, thanks so much for the responses. it's very helpful to get

the perspective of moms who've been there.

we saw the pediatrician today and she agreed that the asymmetry is

very mild but she gave us a referral to the cranio-facial specialist

just to be sure. she's a resident and actually works with this guy

sometimes, which is cool. she said he's excellent and will definitely

be able to say for sure whether she'd benefit from a helmet. she

thinks maggie won't need one because the asymmetry is so mild, but

she's not sure because she hasn't seen very many borderline cases.

i have pictures if anyone wants to get an idea of how she looks, is

the best way to put them in the photos there? then can i link to them

from that? is it ok to just put a URL in to my snapfish?? if that's

ok, here's a photo from about a month ago that i think shows the

asymmetry in her face (her beautiful little face!!)

http://render1.snapfish.com/render2/is=Yup6aQQ%7C%3Dup6RKKt%3Axxr%3Do-qpDGfX7RPf\

r%3DUofrj7t%3DzrRfDUX%3AeQaQxg%3Dr%3F87KR6xqpxQQQexoJQxonPxv8uOc5xQQQePnPeQleJlq\

pfVtB%3F*KUp7BHSHqqy7XH6gXleG%7CRup6lQQ%7C/of=50,590,442

sorry if you have to copy/paste that. however, i think she's gotten

somewhat better on her own over the past month... here's one from

about a week ago:

http://render1.snapfish.com/render2/is=Yup6aQQ%7C%3Dup6RKKt%3Axxr%3Do-qpDGfX7RPf\

r%3DUofrj7t%3DzrRfDUX%3AeQaQxg%3Dr%3F87KR6xqpxQQPQxeGoxP0exv8uOc5xQQQe0PnQnePPGq\

pfVtB%3F*KUp7BHSHqqy7XH6gXleJ%7CRup6lQQ%7C/of=50,590,442

it looks better to me, but maybe i just need the perfect angle to

really see the asymmetry?

ok so enough of that, hopefully we'll be able to see the specialist

soon, but first i have to call the insurance company and confirm that

the girls switched policies on nov. 1 like they were supposed to

(insurance is always a nightmare and if BC/BS dropped the ball the

girls are without insurance this month. fantastic.).

thanks again, and i will update after we see the specialist.

-desiree

> >

> > hello everyone! i first want to say i'm so thankful for this group!

> > i've browsed through past messages and the files and database, and

> > it's already answered so many of my questions. thank you!

> >

> > so, my younger daughter (maggie, 5.5 months old) had a moderate case

> > of torticollis (caused by an ear to shoulder position in utero).

> she's

> > been in physical therapy since she was 3 months old and has done

> > wonderfully, the tilt is almost gone (just returns when she's

> tired).

> >

> > however, the PT said she thought her plagiocephaly was borderline

> and

> > that we should see a specialist. she had some mild (i thought)

> > flattening, but it really hasn't improved at all (maybe mildly? i SO

> > wish i had taken pictures at 2 months old). i got a second opinion

> > from a PT friend and he agreed, borderline. so we're going to see

> the

> > pediatrician on monday for a referral to a cranio-facial specialist.

> >

> > i have a few questions though. has anyone here been a borderline

> case

> > and not gotten a helmet? or been a borderline case and gotten one?

> how

> > did you make a decision? any special questions i should ask?

> >

> > also, i've made the mistake of telling family, and they are all

> > telling me that she looks fine, everyone has some asymmetry, etc.

> does

> > everyone get this from family? i obviously don't WANT her in a

> helmet,

> > but i don't want her to have more asymmetry in her face than she

> > should have, you know? what do you tell people who don't see the

> > asymmetry ad think you're doing it for no good reason?

> >

> > thanks so much everyone, it's really nice to have this group!

> >

> > -desiree, mom to nina (3) and maggie (5.5 months)

> >

>

[Guest guest]

Hi ,

I saw the picture and can see the facial asymmetry. However I think

just from looking at her face you can't tell the whole story. Most

often the top view shows asymmetry the best. Given what I see from the

front, I think a helmet could be needed. If you can post a top view

I'll tell you what I think. I'm certainly not doctor, but have been in

this group over 2 years. I know we all want to avoid banding, but your

goal should be for your daughter's head to be the best possible, and

it might require banding. I remember my ped telling me that she

thought my daughter was borderline, and that was definitely not the

case. My ped was just not used to diagnosing plagio/brachy (in our

case my daughter had brachy so was flat in back with extra width but

little asymmetry). I just don't want you to get your heart set on

" mild " and find out later you do need a band.

take care. -christine

sydney, almost 3 yrs, starband grad

>

> everyone, thanks so much for the responses. it's very helpful to get

> the perspective of moms who've been there.

>

> we saw the pediatrician today and she agreed that the asymmetry is

> very mild but she gave us a referral to the cranio-facial specialist

> just to be sure. she's a resident and actually works with this guy

> sometimes, which is cool. she said he's excellent and will definitely

> be able to say for sure whether she'd benefit from a helmet. she

> thinks maggie won't need one because the asymmetry is so mild, but

> she's not sure because she hasn't seen very many borderline cases.

>

> i have pictures if anyone wants to get an idea of how she looks, is

> the best way to put them in the photos there? then can i link to them

> from that? is it ok to just put a URL in to my snapfish?? if that's

> ok, here's a photo from about a month ago that i think shows the

> asymmetry in her face (her beautiful little face!!)

>

>

http://render1.snapfish.com/render2/is=Yup6aQQ%7C%3Dup6RKKt%3Axxr%3Do-qpDGfX7RPf\

r%3DUofrj7t%3DzrRfDUX%3AeQaQxg%3Dr%3F87KR6xqpxQQQexoJQxonPxv8uOc5xQQQePnPeQleJlq\

pfVtB%3F*KUp7BHSHqqy7XH6gXleG%7CRup6lQQ%7C/of=50,590,442

>

> sorry if you have to copy/paste that. however, i think she's gotten

> somewhat better on her own over the past month... here's one from

> about a week ago:

>

>

http://render1.snapfish.com/render2/is=Yup6aQQ%7C%3Dup6RKKt%3Axxr%3Do-qpDGfX7RPf\

r%3DUofrj7t%3DzrRfDUX%3AeQaQxg%3Dr%3F87KR6xqpxQQPQxeGoxP0exv8uOc5xQQQe0PnQnePPGq\

pfVtB%3F*KUp7BHSHqqy7XH6gXleJ%7CRup6lQQ%7C/of=50,590,442

>

> it looks better to me, but maybe i just need the perfect angle to

> really see the asymmetry?

>

> ok so enough of that, hopefully we'll be able to see the specialist

> soon, but first i have to call the insurance company and confirm that

> the girls switched policies on nov. 1 like they were supposed to

> (insurance is always a nightmare and if BC/BS dropped the ball the

> girls are without insurance this month. fantastic.).

>

> thanks again, and i will update after we see the specialist.

>

> -desiree

>