New here

[Guest guest]

Hello and welcome to our group. I was hoping you joined the

chat last night... i left around 10:30 so i really don't know if you

had a chance to join after that. I am also the mother of twins,

both boys. Ignacio, who was baby A, was head down since the 22 week

or so and his brother was sort of sitting on top of him so his head

got really compressed in my pelvis. We noticed the plagio since he

was 4 days old and every time we ask about it we got the " it will

round on its own " speech. True, some babies round on its own but,

in Ignacio's case this was not a possibility. Even with the DOC

band he will remain to have an uneven head shape due to the fact

that his skull sutures are downward instead of upward... We have

gotten good correction with the banding treatment and we still hope

to get some more correction in the following weeks.

Where are you from??? That would help a lot since most probably

there is a member of this group that can share their experience at

the CT facility you will be going. Right now, we are getting our

treatment at Miami.

Regarding the problem with the ped... my ped didn't know about

plagio until I told him about it and, trust me, he's a great ped; I

wouldnt change him. But he was honest enough to express his

limitations and put me in contact with a neurosurgeon who has

experience with this matter. To make a really long story short, we

got our referral from a neurologist that already had experience with

the DOC Band and CT employees gave us his name and phone. I would

recommend that you try to get an appointment with a neurosurgeon or

a cranio-facial surgeon which are usually the medical experts that

treat plagio.

Concerning the preference the twins express toward one side...

consider the possibility that they might have some degree of tort.

my ped told me that tort is really common in babies, specially when

they were really tight inside the uterus (as would be the case of

multiple pregnancies).

Just wanted to welcome you and offer my help any way i can.

Annie

Mom to twins, Ignacio (DOC 12/2/03 & 2/17/04) &

San , PR

--- In Plagiocephaly , " rwatts080577 " <rewatts@a...>

wrote:

> I have twins who are 15 wks old. They were both head down for my

> entire last trimester and they were born with a flat side. Ever

> since their two week ped appt I have been asking their ped about

> their heads b/c it really concerns me. She sort of keeps brushing

> me off saying " they'll go back to normal when they start sitting

> up " . I am very nervous about leaving it to chance. I have an

appt

> April 7th at cranial tech for a consultation. Does anyone have

any

> advice for " convincing " my babies ped that I have a reason to be

> concerned? I would also love some advice/tips on repositioning.

My

> babies are very stubborn and they really prefer one side.

> Thanks in advance.

>

[Guest guest]

Hi Mish,

Welcome to the group. It sounds like your son has torticollis as well as plagiocephally. I am sure the ladies here can give you more information on this than I, but in order to get the best results from repositioning you would also need to do stretching exercises to help with the torticollis.

I am not the most knowledgeable so hopefully someone else can help you out more.

Deborah w. Aidan DOC grad 2/5

New here

Hi, I am new here, and my son has a plagiocephaly. It has not been addressed with any intervention other than a casual discussion to try to keep his head from constantly turning to the left.After finding an article, I now realize he has it caused from in utero(I noticed his flat front/right in the first days home from the hospital). I believe he had the flatness and it causes him to go that way. He is now 3 months and I see little change despite his often sleeping with his head turned to thr right, now(his flat area is on the left posterior and right/front). There is about a inch difference with is left ear being forward of his right one when I look down on his head! This seemed dramatic to me and got me nervous. I also notice his brow and right eye are smaller looking. He seems to be pulled to the left alot, but can look right and is breaking out of this more and more now. I am trying some small amounts of tummy time(he does not like it and spits up alot) and trying to keep him off the left/back flat spot when resting by propping him on the right side. From what I have read, the management is really just positioning, unless it is moderate to severe. I also put a call into the ped to ask if we should take more action now, as our next appt. is not for a month(4 month follow up). Any other advice, or does this all sound alright? What has me a bit scared is that he has syndactyly(webbing of two toes) on each foot. I fist was just looking up something on this for fun(not thinking it a real problem) when I saw a connection mentioned between this and sometimes a fused suture in the head. It made me look deeper into the "flat head". I would feel better to have x-rays and just be sure his sutures are not fused at all! Thanks, mish For more plagio info

[Guest guest]

Hi Michele,

Welcome to the group!!

That is really interesting. Have you mentioned this to his doctor? If

you do call him (which I think you should), please ask him about the

possiblity of your son have Tort (torticollis-sp?)as well. It is the

tightening of the neck muscles and causes the head to favor one side.

Repositioning your son while he has it (if he does have it), will be

difficult. Repositioning is not your only option. Even if your son

was considered " mild " , you could investigate the possibility of

getting him a band or helmet. He is at a wonderful age for correction

with a band or helmet, especially since he has the ear assymetry.

Where are you located ?

> Hi, I am new here, and my son has a plagiocephaly. It has not been

> addressed with any intervention other than a casual discussion to

try

> to keep his head from constantly turning to the left.

>

> After finding an article, I now realize he has it caused from in

utero

> (I noticed his flat front/right in the first days home from the

> hospital). I believe he had the flatness and it causes him to go

> that way. He is now 3 months and I see little change despite his

> often sleeping with his head turned to thr right, now(his flat area

> is on the left posterior and right/front). There is about a inch

> difference with is left ear being forward of his right one when I

> look down on his head! This seemed dramatic to me and got me

> nervous. I also notice his brow and right eye are smaller

looking.

>

> He seems to be pulled to the left alot, but can look right and is

> breaking out of this more and more now.

>

> I am trying some small amounts of tummy time(he does not like it

and

> spits up alot) and trying to keep him off the left/back flat spot

> when resting by propping him on the right side.

>

> From what I have read, the management is really just positioning,

> unless it is moderate to severe. I also put a call into the ped to

> ask if we should take more action now, as our next appt. is not for

a

> month(4 month follow up).

>

> Any other advice, or does this all sound alright? What has me a

bit

> scared is that he has syndactyly(webbing of two toes) on each

foot.

> I fist was just looking up something on this for fun(not thinking

it

> a real problem) when I saw a connection mentioned between this and

> sometimes a fused suture in the head. It made me look deeper into

> the " flat head " .

>

> I would feel better to have x-rays and just be sure his sutures are

> not fused at all! Thanks, mish

[Guest guest]

Hi,

Welcome to the group! I just want to second everything has

already told you and too add, when a baby has mild plagio and it is

accompanied with facial/ear asymmetry the baby is usually banded. I

know that Cranial Tech, they make the DOCband will band babies that

have asymmetry.

> > Hi, I am new here, and my son has a plagiocephaly. It has not

been

> > addressed with any intervention other than a casual discussion to

> try

> > to keep his head from constantly turning to the left.

> >

> > After finding an article, I now realize he has it caused from in

> utero

> > (I noticed his flat front/right in the first days home from the

> > hospital). I believe he had the flatness and it causes him to go

> > that way. He is now 3 months and I see little change despite his

> > often sleeping with his head turned to thr right, now(his flat

area

> > is on the left posterior and right/front). There is about a inch

> > difference with is left ear being forward of his right one when I

> > look down on his head! This seemed dramatic to me and got me

> > nervous. I also notice his brow and right eye are smaller

> looking.

> >

> > He seems to be pulled to the left alot, but can look right and is

> > breaking out of this more and more now.

> >

> > I am trying some small amounts of tummy time(he does not like it

> and

> > spits up alot) and trying to keep him off the left/back flat spot

> > when resting by propping him on the right side.

> >

> > From what I have read, the management is really just positioning,

> > unless it is moderate to severe. I also put a call into the ped

to

> > ask if we should take more action now, as our next appt. is not

for

> a

> > month(4 month follow up).

> >

> > Any other advice, or does this all sound alright? What has me a

> bit

> > scared is that he has syndactyly(webbing of two toes) on each

> foot.

> > I fist was just looking up something on this for fun(not thinking

> it

> > a real problem) when I saw a connection mentioned between this

and

> > sometimes a fused suture in the head. It made me look deeper

into

> > the " flat head " .

> >

> > I would feel better to have x-rays and just be sure his sutures

are

> > not fused at all! Thanks, mish

[Guest guest]

I am im MA.

The doctor and I did discuss the flattening and head turning at the 2

month visit, maybe even before that. We are watching. But there is

a big gap to the 4 month f/u and it has not improved. I do think he

has/had a mild tort. I am a PT, coincidentally, but for adults

(and " retired " as I raise my children). I was thinking there seemed

to be a " pull " or increase tone causing his head to pull to the left,

but it is not a full blown tort. with the head tilt and he can move

out of it as time goes by, more and more. More like a habit

or " twitch " to do it now.

Yes, the ears were quite striking when I checked after seeing my sons

head in an article! I do think we are dealing with an in utero thing

here, which might also explain the mild torticollis.

I did leave a message with the ped office today explaining the

concern, mostly not wanting to miss " the window of opportunity "

should it require intervention.

He is usually very responsive. We deal with food allergies with the

children as well, and I have a good rapport withhim. Thanks for the

replies so fsat. I just want to be sure his sutures are okay and to

do something young if it means a faster course of intervention!

mish

- In Plagiocephaly , " Deborah Choi " <dchoi@s...> wrote:

> Hi Mish,

>

> Welcome to the group. It sounds like your son has torticollis as

well as plagiocephally. I am sure the ladies here can give you more

information on this than I, but in order to get the best results from

repositioning you would also need to do stretching exercises to help

with the torticollis.

>

> I am not the most knowledgeable so hopefully someone else can help

you out more.

>

> Deborah w. Aidan DOC grad 2/5

> New here

>

>

> Hi, I am new here, and my son has a plagiocephaly. It has not

been

> addressed with any intervention other than a casual discussion to

try

> to keep his head from constantly turning to the left.

>

> After finding an article, I now realize he has it caused from in

utero

> (I noticed his flat front/right in the first days home from the

> hospital). I believe he had the flatness and it causes him to go

> that way. He is now 3 months and I see little change despite his

> often sleeping with his head turned to thr right, now(his flat

area

> is on the left posterior and right/front). There is about a inch

> difference with is left ear being forward of his right one when I

> look down on his head! This seemed dramatic to me and got me

> nervous. I also notice his brow and right eye are smaller

looking.

>

> He seems to be pulled to the left alot, but can look right and is

> breaking out of this more and more now.

>

> I am trying some small amounts of tummy time(he does not like it

and

> spits up alot) and trying to keep him off the left/back flat spot

> when resting by propping him on the right side.

>

> From what I have read, the management is really just positioning,

> unless it is moderate to severe. I also put a call into the ped

to

> ask if we should take more action now, as our next appt. is not

for a

> month(4 month follow up).

>

> Any other advice, or does this all sound alright? What has me a

bit

> scared is that he has syndactyly(webbing of two toes) on each

foot.

> I fist was just looking up something on this for fun(not thinking

it

> a real problem) when I saw a connection mentioned between this

and

> sometimes a fused suture in the head. It made me look deeper

into

> the " flat head " .

>

> I would feel better to have x-rays and just be sure his sutures

are

> not fused at all! Thanks, mish

>

>

>

> For more plagio info

[Guest guest]

Hi Michele,

I justed to welcome you to the group since I am so late in responding

to your post.

My son has plagio, tort and reflux as well. We think that his reflux

may have been caused by the tort. He has been on Prevacid for 5

months now and it has helped the chronic spitting. I sure wish I had

talked to my doc about it before my son's 9 month appt. Reflux can

make some babies hate tummy time because of the discomfort and it

they baby has tort as well, tummy time can be almost like torture!

Please keep us posted.

- mom to Aidan

> Hi, I am new here, and my son has a plagiocephaly. It has not been

> addressed with any intervention other than a casual discussion to

try

> to keep his head from constantly turning to the left.

>

> After finding an article, I now realize he has it caused from in

utero

> (I noticed his flat front/right in the first days home from the

> hospital). I believe he had the flatness and it causes him to go

> that way. He is now 3 months and I see little change despite his

> often sleeping with his head turned to thr right, now(his flat area

> is on the left posterior and right/front). There is about a inch

> difference with is left ear being forward of his right one when I

> look down on his head! This seemed dramatic to me and got me

> nervous. I also notice his brow and right eye are smaller

looking.

>

> He seems to be pulled to the left alot, but can look right and is

> breaking out of this more and more now.

>

> I am trying some small amounts of tummy time(he does not like it

and

> spits up alot) and trying to keep him off the left/back flat spot

> when resting by propping him on the right side.

>

> From what I have read, the management is really just positioning,

> unless it is moderate to severe. I also put a call into the ped to

> ask if we should take more action now, as our next appt. is not for

a

> month(4 month follow up).

>

> Any other advice, or does this all sound alright? What has me a

bit

> scared is that he has syndactyly(webbing of two toes) on each

foot.

> I fist was just looking up something on this for fun(not thinking

it

> a real problem) when I saw a connection mentioned between this and

> sometimes a fused suture in the head. It made me look deeper into

> the " flat head " .

>

> I would feel better to have x-rays and just be sure his sutures are

> not fused at all! Thanks, mish

[Guest guest]

,

I'm impressed that you are already researching and addressing your

son's plagio and he is only 3 months old! You have already gotten

so many informed replies, I just wanted to post and comment on your

mentioning that repositioning is the preferred treatment if mild.

Aggressive repo can certainly work, even though it is exhausting.

We were able to successfully treat our daughter Remy's plagio with

repo only, no helmet or band. If you would like to see her progress

photos, they are in the PHOTOS/BEFORE AND AFTER/REPOSITIONED

folder. Are you assessing your son's plagio as mild? When you

mentioned that his ears are approx. 1 " off, and his is only 3 months

old, that also struck me as somewhat significant. Do you think he

is maybe at least moderate? Do you also see any forehead bossing

when you look at the top view of his head? Although I would have

rated Remy as having moderate plagio/brachy, she did not have any

facial/forehead/ear misalignment. At his young age, you certainly

have time to try to get some improvement with repo while you are

waiting for another assessment in a month. We have a ton of repo

information in the LINKS/REPO AND TUMMY TIME folder, as well as the

FILES/REPO HEADQUARTERS folder. Check them out when you have time,

and let me know if I can be of any help with your repo!

Take care,

Christie (Mom to Repo'd Remy)

> Hi, I am new here, and my son has a plagiocephaly. It has not

been

> addressed with any intervention other than a casual discussion to

try

> to keep his head from constantly turning to the left.

>

> After finding an article, I now realize he has it caused from in

utero

> (I noticed his flat front/right in the first days home from the

> hospital). I believe he had the flatness and it causes him to go

> that way. He is now 3 months and I see little change despite his

> often sleeping with his head turned to thr right, now(his flat

area

> is on the left posterior and right/front). There is about a inch

> difference with is left ear being forward of his right one when I

> look down on his head! This seemed dramatic to me and got me

> nervous. I also notice his brow and right eye are smaller

looking.

>

> He seems to be pulled to the left alot, but can look right and is

> breaking out of this more and more now.

>

> I am trying some small amounts of tummy time(he does not like it

and

> spits up alot) and trying to keep him off the left/back flat spot

> when resting by propping him on the right side.

>

> From what I have read, the management is really just positioning,

> unless it is moderate to severe. I also put a call into the ped

to

> ask if we should take more action now, as our next appt. is not

for a

> month(4 month follow up).

>

> Any other advice, or does this all sound alright? What has me a

bit

> scared is that he has syndactyly(webbing of two toes) on each

foot.

> I fist was just looking up something on this for fun(not thinking

it

> a real problem) when I saw a connection mentioned between this and

> sometimes a fused suture in the head. It made me look deeper into

> the " flat head " .

>

> I would feel better to have x-rays and just be sure his sutures

are

> not fused at all! Thanks, mish

[Guest guest]

Hi Margy,

Welcome to the group! Hope the fitting goes well today for

. His hair shouldn't be a problem although I would think if

it is pretty thick then his sweating might be worse. I'm not sure

about how they accommodate for glasses but I'm sure that your ortho

will know what to do.

You might want to dress him a little cooler for the first couple of

days until his body adjusts to it. Most people on the board either

paint their helmets or put stickers on them. It is all up to your

skill level (I have none) and imagination (none of that either!).

Look forward to hearing from you again.

Natasha

> Hello all! :-)

> My name is Margy, single mom to who is 16 months old.

> has plagiocephaly, among other things (he also has

cerebral

> palsy) and we are getting him fitted tomorrow morning for a

helmet.

> I never realized how much web info. there is about plagio until I

> checked it out this evening! I just love all the bright colors on

> the helmets, makes it easier to come to terms with the idea of my

son

> wearing this helmet for a year. I was wondering if we have to

keep

> our baby's hair short while they are in the helmets? And are

their

> any other children who also wear glasses? I am wondering how well

> Tony's glasses will fit over the helmet, I guess they will cut

holes

> near his ears for it? I am so glad to see this group! :-)

We

> live in Portland, Oregon and thankfully have a Hanger Orthotics

right

> nearby within a 30 minute drive. Has anybody had their child's

head

> fitted at this particular place? My son's chiropractor says she

> knows the man who fits the kiddos there...his name is Rudolph?

> Anybody have good/bad experiences they are willing to share?

>

> Margy

> mom to Tony 12/8/02

>

> PS How do you get the helmets colored so beautifully!! And how do

> you keep the sweating at a minimal during the summer? Looking

> forward to hearing from you all! :-)

[Guest guest]

Hi Margy, and welcome:

I just wanted to let you know about a therapy that has helped many

kids with CP - (the spastic kind). CranioSacral Therapy has been

known to greatly improve the symptoms in CP. For some reason, it

works better with the spastic form rather than the hypotonia. It

seems that in these cases, the CP was correlated with cranial suture

restrictions (like those found in plagiocephaly). You can read more

on Upledger.com about these types of treatments, or even email them

to see if this type of therapy is for your little Tony.

You can also have your Tony evaluated with a Cranial Osteopath to see

what he/she might say. I know Chiropractors are terrific, but a

Cranial Osteopath works specifically with the head, and might have

more info for you. (My daughter saw both a Chiro and a Cranial

Osteopath, AND a craniosacral therapist AND had helmet therapy AND OT

AND PT and also a Pediatric Chinese Massage specialist). She did not

have CP, but I have heard of others who do and wanted to pass this

info on to you for you to check into yourself and see if it is

something you want to know more about.

Best wishes,

, Rhiannon's mom

> Hello all! :-)

> My name is Margy, single mom to who is 16 months old.

> has plagiocephaly, among other things (he also has cerebral

> palsy) and we are getting him fitted tomorrow morning for a

helmet.

> I never realized how much web info. there is about plagio until I

> checked it out this evening! I just love all the bright colors on

> the helmets, makes it easier to come to terms with the idea of my

son

> wearing this helmet for a year. I was wondering if we have to keep

> our baby's hair short while they are in the helmets? And are their

> any other children who also wear glasses? I am wondering how well

> Tony's glasses will fit over the helmet, I guess they will cut

holes

> near his ears for it? I am so glad to see this group! :-)

We

> live in Portland, Oregon and thankfully have a Hanger Orthotics

right

> nearby within a 30 minute drive. Has anybody had their child's

head

> fitted at this particular place? My son's chiropractor says she

> knows the man who fits the kiddos there...his name is Rudolph?

> Anybody have good/bad experiences they are willing to share?

>

> Margy

> mom to Tony 12/8/02

>

> PS How do you get the helmets colored so beautifully!! And how do

> you keep the sweating at a minimal during the summer? Looking

> forward to hearing from you all! :-)

[Guest guest]

Hi Margy - Welcome to the group!

Good luck with the fitting!

Krissy

ph's Mom

Tampa FL

On May 5, 2004, at 1:35 AM, tonysmama1202 wrote:

> Hello all! :-)

> My name is Margy, single mom to who is 16 months old.

> has plagiocephaly, among other things (he also has cerebral

> palsy) and we are getting him fitted tomorrow morning for a helmet.

> I never realized how much web info. there is about plagio until I

> checked it out this evening! I just love all the bright colors on

> the helmets, makes it easier to come to terms with the idea of my son

> wearing this helmet for a year. I was wondering if we have to keep

> our baby's hair short while they are in the helmets? And are their

> any other children who also wear glasses? I am wondering how well

> Tony's glasses will fit over the helmet, I guess they will cut holes

> near his ears for it? I am so glad to see this group! :-) We

> live in Portland, Oregon and thankfully have a Hanger Orthotics right

> nearby within a 30 minute drive. Has anybody had their child's head

> fitted at this particular place? My son's chiropractor says she

> knows the man who fits the kiddos there...his name is Rudolph?

> Anybody have good/bad experiences they are willing to share?

>

> Margy

> mom to Tony 12/8/02

>

> PS How do you get the helmets colored so beautifully!! And how do

> you keep the sweating at a minimal during the summer? Looking

> forward to hearing from you all! :-)

>

>

>

>

[Guest guest]

Hi Margy,

I am fairly new here a few weeks ago and just scheduled an appt to

get my son banded as well(he is 4 months old tomorrow). I just

wanted to reach out and welcome someone new, since I have mostly been

coming and seeking help! Want to give back a bit.

We have no experience with the helmet yet, as we do not have it yet.

But I too was thinking about making it more fun with some decorations

or such. I think some have also used rub on transfers. I do alot of

scrapbooking and imagine many of those stickers and transfers and

products would do well on a helemt.

You certainly have a full plate and I count my bleesings that we are

strictly dealing with a cosmetic situation. I am a PT by profession

(though not pediatric) and was reading with interest the resonse you

got about CST(craniosacral therapy). I have used it myself for

orhtopedic problems and it is definately a great adjunct to

traditional therapies for any condition invloving tissue

restrictions.

I wish you all the best with your little guy. Welcome. mish

> Hello all! :-)

> My name is Margy, single mom to who is 16 months old.

> has plagiocephaly, among other things (he also has cerebral

> palsy) and we are getting him fitted tomorrow morning for a

helmet.

> I never realized how much web info. there is about plagio until I

> checked it out this evening! I just love all the bright colors on

> the helmets, makes it easier to come to terms with the idea of my

son

> wearing this helmet for a year. I was wondering if we have to keep

> our baby's hair short while they are in the helmets? And are their

> any other children who also wear glasses? I am wondering how well

> Tony's glasses will fit over the helmet, I guess they will cut

holes

> near his ears for it? I am so glad to see this group! :-)

We

> live in Portland, Oregon and thankfully have a Hanger Orthotics

right

> nearby within a 30 minute drive. Has anybody had their child's

head

> fitted at this particular place? My son's chiropractor says she

> knows the man who fits the kiddos there...his name is Rudolph?

> Anybody have good/bad experiences they are willing to share?

>

> Margy

> mom to Tony 12/8/02

>

> PS How do you get the helmets colored so beautifully!! And how do

> you keep the sweating at a minimal during the summer? Looking

> forward to hearing from you all! :-)

[Guest guest]

Hi Margy,

Welcome to the group!

Decorating a helmet certainly does it make easyier for us to adjust

to them, as well as those we come into contact with (strangers and

friends/family alike.) Many people paint the helmets/bands and there

are instructions in the Decorating tips file that we have here.

As for the glasses, I am not sure how it is handled. I have not

heard of it lately, but I will guess that someone reading your post

will know.

As for his hair, you do not have to keep it short at all. We have

had many babies with a FULL head of hair while being treated and

there were no side effects because of it!

Best of luck!!

- mom to Aidan

GR MI

> Hello all! :-)

> My name is Margy, single mom to who is 16 months old.

> has plagiocephaly, among other things (he also has cerebral

> palsy) and we are getting him fitted tomorrow morning for a

helmet.

> I never realized how much web info. there is about plagio until I

> checked it out this evening! I just love all the bright colors on

> the helmets, makes it easier to come to terms with the idea of my

son

> wearing this helmet for a year. I was wondering if we have to keep

> our baby's hair short while they are in the helmets? And are their

> any other children who also wear glasses? I am wondering how well

> Tony's glasses will fit over the helmet, I guess they will cut

holes

> near his ears for it? I am so glad to see this group! :-)

We

> live in Portland, Oregon and thankfully have a Hanger Orthotics

right

> nearby within a 30 minute drive. Has anybody had their child's

head

> fitted at this particular place? My son's chiropractor says she

> knows the man who fits the kiddos there...his name is Rudolph?

> Anybody have good/bad experiences they are willing to share?

>

> Margy

> mom to Tony 12/8/02

>

> PS How do you get the helmets colored so beautifully!! And how do

> you keep the sweating at a minimal during the summer? Looking

> forward to hearing from you all! :-)

[Guest guest]

Hi,

Welcome to the group. On our site:

Plagiocephaly/

all you have to do is look on the left hand side and click on Photos.

Please let us know when your appt is.

> HI! I am very excited to have found your group. My little girl is 5

> months old and has plagio and tort. I am waiting to hear from the

> Pediatric Neurosurgeon today as to when her appt. is. This

particular

> neurosurgeon runs a plagio clinic. I am very excited about getting

in

> to see her because my Ped. doesn't really believe in the band, and

I

> feel certain that this is going to be what Lilly needs to correct

her

> plagio. We have tried everything it seems to help to round her head

> back out, but I don't see any real change. I am very excited by the

> results that I see in the pictures of children who have used the

> band. I have been reading some of the posts here and I would love

to

> be able to see the photos that are mentioned, but I don't know how

to

> get to them. Any help?

>

> Kate

> Mom to Lilly 5 months

> Plagio and Tort.

[Guest guest]

Welcome to the group. Click on the photos link. There is a special section

of before and afters. There is also another section of the babies with their

bands and some that have casting pictures. Please let us know Lilly gets

her appointment

Angie and Jenna(STAR grad)

New Here

> HI! I am very excited to have found your group. My little girl is 5

> months old and has plagio and tort. I am waiting to hear from the

> Pediatric Neurosurgeon today as to when her appt. is. This particular

> neurosurgeon runs a plagio clinic. I am very excited about getting in

> to see her because my Ped. doesn't really believe in the band, and I

> feel certain that this is going to be what Lilly needs to correct her

> plagio. We have tried everything it seems to help to round her head

> back out, but I don't see any real change. I am very excited by the

> results that I see in the pictures of children who have used the

> band. I have been reading some of the posts here and I would love to

> be able to see the photos that are mentioned, but I don't know how to

> get to them. Any help?

>

> Kate

> Mom to Lilly 5 months

> Plagio and Tort.

>

>

>

>

> For more plagio info

[Guest guest]

Thanks!

There are some cuties in there!

> > HI! I am very excited to have found your group. My little girl is

5

> > months old and has plagio and tort. I am waiting to hear from the

> > Pediatric Neurosurgeon today as to when her appt. is. This

> particular

> > neurosurgeon runs a plagio clinic. I am very excited about

getting

> in

> > to see her because my Ped. doesn't really believe in the band,

and

> I

> > feel certain that this is going to be what Lilly needs to correct

> her

> > plagio. We have tried everything it seems to help to round her

head

> > back out, but I don't see any real change. I am very excited by

the

> > results that I see in the pictures of children who have used the

> > band. I have been reading some of the posts here and I would love

> to

> > be able to see the photos that are mentioned, but I don't know

how

> to

> > get to them. Any help?

> >

> > Kate

> > Mom to Lilly 5 months

> > Plagio and Tort.

[Guest guest]

In a message dated 5/5/2004 8:55:23 AM Pacific Standard Time, michele_walsh@... writes:

I just

wanted to reach out and welcome someone new, since I have mostly been

coming and seeking help! Want to give back a bit.

Thank you, it's great to be welcomed! :-)

Margy

mom to Tony 12/8/02

[Guest guest]

In a message dated 5/5/2004 6:59:38 AM Pacific Standard Time, dweston6587@... writes:

You can also have your Tony evaluated with a Cranial Osteopath to see

what he/she might say. I know Chiropractors are terrific, but a

Cranial Osteopath works specifically with the head, and might have

more info for you. (My daughter saw both a Chiro and a Cranial

Osteopath, AND a craniosacral therapist AND had helmet therapy AND OT

AND PT and also a Pediatric Chinese Massage specialist). She did not

have CP, but I have heard of others who do and wanted to pass this

info on to you for you to check into yourself and see if it is

something you want to know more about.

Best wishes,

, Rhiannon's mom

Thanks so much ! :-) My son has been seeing the chrio since he was a few weeks old, so for about 15 months now. He sees her 1-2 times a week, she has really helped him become the little boy that he is today. She does cranio sacral work on him. Is there a difference between a chiro that does craniosacral and a cranial osteopath? My son's chiro (Judith Boothby) was licensed at MIT, and she has a business that works with children daily as well as adults. We used to have acupuncture once a week too, but the costs of everything are getting too high. How much does the cranial osteopath cost?

Margy

mom to Tony 12/8/02

[Guest guest]

In a message dated 5/5/2004 8:10:03 AM Pacific Standard Time, krissycook@... writes:

Hi Margy - Welcome to the group!

Good luck with the fitting!

Krissy

Thanks Krissy!

The fitting went well, the man used a netting and before he put it on my son's head he cut a hole in it for his whole face. It was nothing like the pictures that I have seen of the helmet fittings - I was worried he would need a bath! But it was so clean and done within 3 minutes, my son only cried at the end when they took it off of his head. The Hanger orthotics was a nice place with a very child-friendly environment, and the man who fitted my son was very knowledgeable and was able to answer all my questions to my satisfaction. It all took less than half an hour and we were out of there! :-)

Margy and Tony

[Guest guest]

In a message dated 5/5/2004 5:25:00 AM Pacific Standard Time, ngubash@... writes:

His hair shouldn't be a problem although I would think if

it is pretty thick then his sweating might be worse. I'm not sure

about how they accommodate for glasses but I'm sure that your ortho

will know what to do.

You might want to dress him a little cooler for the first couple of

days until his body adjusts to it.

Thanks for the advice Natasha! :-) I asked them about the glasses and he said no problem, they were more worried about hearing aids, I guess that is a problem to mold the helmets around. He mentioned that they even put helmets on children with shunts, they can work around anything!

Margy and Tony

[Guest guest]

Hi,

Welcome to the group! I'm late in replying, owing to a move to a

new home, but I wanted to say that I am happy to see you at the

group!

Your daughter is a great age for evaluation and treatment.

Repositioning doesn't work in every situation, and I'm sorry your

ped hasn't taken your effort into account and offerred you the

option of banding at this point. Usually repo is extremely

difficult if the baby has tort; tort seriously undermines repo

efforts and may be why you have seen no real change. Have you found

out when Lilly's appt. will be at the ped neuro? We also maintain a

Helmet/Band facilities database in the database section of the

group... do you know if this ped neuro and his clinic are already

listed? When you have a chance, please check out the database and

let me know. I'd love to add an additional facility if it's not

already there.

Keep us posted!

Christie (Mom to Repo'd Remy)

> HI! I am very excited to have found your group. My little girl is

5

> months old and has plagio and tort. I am waiting to hear from the

> Pediatric Neurosurgeon today as to when her appt. is. This

particular

> neurosurgeon runs a plagio clinic. I am very excited about getting

in

> to see her because my Ped. doesn't really believe in the band, and

I

> feel certain that this is going to be what Lilly needs to correct

her

> plagio. We have tried everything it seems to help to round her

head

> back out, but I don't see any real change. I am very excited by

the

> results that I see in the pictures of children who have used the

> band. I have been reading some of the posts here and I would love

to

> be able to see the photos that are mentioned, but I don't know how

to

> get to them. Any help?

>

> Kate

> Mom to Lilly 5 months

> Plagio and Tort.

[Guest guest]

I am in the Kansas City area. Although we didn't go to Cranial Tech my good

friend's son is being treated there right now. Her son has received

wonderful correction.

Angie and Jenna (STAR grad)

New here

> Hello! I just wanted to say that I'm very glad to have found this

> site and all the useful information I've found in just two weeks. My

> 3 month old daughter was diagnosed last week with

> torticollis and plagio. We've begun repositioning and she starts

> physical therapy next week. She also has an appointment next week to

> see a pediatric neurosurgeon at the University of Iowa hospitals. She

> has distinct assymetry of her ears and some facial assymetry as well.

> My husband and I have already made the decision that we would like

> her banded, if the neuro is willing to write the prescription. I was

> wondering if anyone is from this area (Iowa) and if anyone has used

> Cranial Tech in Kansas City?

> Thank you so much for providing such wonderful resources!

>

> and

>

>

>

>

> For more plagio info

[Guest guest]

Hi ,

Welcome to the group! I've included an email address of a member who

used the KC Cranial Tech and she doesn't mind being contacted:

mrsbradshaw@...

Natasha

> Hello! I just wanted to say that I'm very glad to have found this

> site and all the useful information I've found in just two weeks.

My

> 3 month old daughter was diagnosed last week with

> torticollis and plagio. We've begun repositioning and she starts

> physical therapy next week. She also has an appointment next week

to

> see a pediatric neurosurgeon at the University of Iowa hospitals.

She

> has distinct assymetry of her ears and some facial assymetry as

well.

> My husband and I have already made the decision that we would like

> her banded, if the neuro is willing to write the prescription. I

was

> wondering if anyone is from this area (Iowa) and if anyone has used

> Cranial Tech in Kansas City?

> Thank you so much for providing such wonderful resources!

>

> and

[Guest guest]

Hi ,

Welcome to the group! It's refreshing to hear about a baby as young

as being flagged for signs of plagio - that ensures that

all of your treatment options are available to you, and that

treatment decisions can be made in the timeliest of manner!

I'm glad you already have an appt. scheduled next week to see the

ped neuro. When a baby has tort, the lack of range of motion of the

head and neck area really undermine repositioning efforts. Usually

repo results aren't seen until the tort is somewhat resolved.

Having tort may be an important consideration for deciding to move

on to other treatment options.

Would you let us know how 's appt. goes at the neuro? I

don't know if he/she will recommend continued repo efforts in spite

of your daughter's tort, but you should start taking top and side

view photos right away every week to document whether or not you are

seeing any progress with repo, so you can be free to move on to the

helmet and band in a timely manner if repo isn't working. Even

though we didn't helmet Remy ultimately, I was very specific and

pretty much requested a prescription for a cranial orthoses when I

took my own daughter to the neuro.

Take care,

Christie (Mom to Repo'd Remy)

> Hello! I just wanted to say that I'm very glad to have found this

> site and all the useful information I've found in just two weeks.

My

> 3 month old daughter was diagnosed last week with

> torticollis and plagio. We've begun repositioning and she starts

> physical therapy next week. She also has an appointment next week

to

> see a pediatric neurosurgeon at the University of Iowa hospitals.

She

> has distinct assymetry of her ears and some facial assymetry as

well.

> My husband and I have already made the decision that we would like

> her banded, if the neuro is willing to write the prescription. I

was

> wondering if anyone is from this area (Iowa) and if anyone has

used

> Cranial Tech in Kansas City?

> Thank you so much for providing such wonderful resources!

>

> and

[Guest guest]

,

I'm so glad you were able to find the group okay! Welcome!

Weekends are a bit slow, but I'm sure you'll get many responses to

your post. We have a large and active group full of very supportive

members, some of whom have older babies in bands as well, so

hopefully they will post and share!

There is an encouraging before and after photo of a 19.5 month old

in a DOCband in the photos/before and after/docbands/19.5 month old

folder if you would like to take a look. You just never know, your

son could be one big growth spurt from some great correction, so I

am keeping my fingers crossed for you and !

I know we have members from the Seattle area. Many of them are sent

to Children's, where, if I'm not mistaken, they only use the Clarren

helmet by Orthomerica. It's a passive helmet for use up to 18

months of age, so no wonder they wouldn't consider helmeting your

son, since it wouldn't provide much help at all:

http://www.orthomerica.com/products/cranial/clarren.htm

As far as a know, only the DOCband will give it a go up to 24 months

of age, so you are doing absolutely everything you can for your

son! I hate to hear that parents are still getting the run-around

from uninformed medical personnel; it's very discouraging. You

should be commended for perservering in spite of roadblocks thrown

up in your way.

Please keep us posted on how is coming along in his DOCband.

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Hello. Just found this group.

>

> My 18 month old son has tort and untreated plagio. I got him into

a

> band last week after raging at his docs up here (in Seattle) and

> finally flying down to San Diego for a DOC Band out-of-pocket. Has

> anyone else from Washington state run into this inept care? When I

> finally got a referral to Children's they said they could see my

son

> in 5 weeks but that they weren't going to band a 17 month old. We

are

> in an HMO and boy are they slow to notice a problem! Is the

> healthcare system entirely organized around waiting for mommies to

> figure everything out?

>

> Sorry for the cranky tone but my son is stuck with his plagio now -

-

> the DOC band isn't going to give him very good results. Good thing

> he's cute as a bug and doesn't need a perfect head! Any info from

> anyone in the Seattle area would be appreciated. Including how to

> smack a pediatrician's kneecap with a baseball bat...

>

>

>

> Mom of , 18 months

> Seattle

[Guest guest]

Hi ,

I'm in Atlanta but wanted to let you know that unfortunately, your

story is very similar to many members including myself. My son

wasn't banded until he was 12 months when I finally took matters into

my own hands.

I hope will see some correction. We would love to see a

picture of him!

Natasha

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Hello. Just found this group.

>

> My 18 month old son has tort and untreated plagio. I got him into a

> band last week after raging at his docs up here (in Seattle) and

> finally flying down to San Diego for a DOC Band out-of-pocket. Has

> anyone else from Washington state run into this inept care? When I

> finally got a referral to Children's they said they could see my

son

> in 5 weeks but that they weren't going to band a 17 month old. We

are

> in an HMO and boy are they slow to notice a problem! Is the

> healthcare system entirely organized around waiting for mommies to

> figure everything out?

>

> Sorry for the cranky tone but my son is stuck with his plagio now --

> the DOC band isn't going to give him very good results. Good thing

> he's cute as a bug and doesn't need a perfect head! Any info from

> anyone in the Seattle area would be appreciated. Including how to

> smack a pediatrician's kneecap with a baseball bat...

>

>

>

> Mom of , 18 months

> Seattle