Re: Re: Questions re: facial asymmetry

[Guest guest]

Yes, Tyler's right ear is forward, but they are not off in alignment looking

down on his head. One just looks larger than the other because its foward

and the other is more tilted backward. We saw a cranial facial specialist

who said it was very minor and made us feel somewhat stupid for even bringing

him there. He has definite facial asymmetry, whether its minor or not. His

left side is definitely less filled out than his right with his left jaw

coming up higher than the right. The specialist we saw was supposed to be

one of the best in my areas (I'm from Massachusetts). We went to Boston

Children's Hospital. But those doctors did not impress me as they did not

give me the time or day. I guess their main concern is the head shape and

not necessarily the facial asymmetry. So, as a result, I'm left to think

that there is not much that can be done. I'm not sure if Tyler would need a

helmet (He's off by 4 millimeters). His head is not that unshapely. He has

somewhat of a flat area toward the back right of his head, but even in my

opinion, I don't think that a helmet or DOC band is warranted for that. I

was just looking for something to help his frontal asymmetry and the doctors

told me that a helmet would not help the frontal aspect. Oh well. What to

do?

[Guest guest]

In a message dated 6/5/00 6:22:09 AM Pacific Daylight Time, josie3122@...

writes:

<< I

was just looking for something to help his frontal asymmetry and the doctors

told me that a helmet would not help the frontal aspect. Oh well. What to

do?

>>

My son also has facial asymmetry. I guess off from 7 - 11 mm. He also has

right torticollis. We just started the DOC Band Friday. The Doc Band people

told us if he had a nice shaped head his facial bones are connected and that

they will follow. We were told he would be better but not 100%. I will

share with everyone how he looks at the end of treatment. Hoping when we get

ride of the tilt and get a nice shaped head that it will be a visible

improvement. I really had to fight to get them to write a letter of

necessity. I didn't want to take any chances, but that is just me.

Tammy & 12/8/99

[Guest guest]

Hi, I am also from Massachusetts. We brought our son to Children's

Hospital..I was wondering which doctor you saw? Our son was 12mm off..that

was a month ago. His ears are also off and his right cheek is more filled in

than the left. They told us that our only option was to go to North Carolina

for the DOC band. We decided to work with the PT and a rigarous routine of

keeping him off the flat side until his next appt. My husband and I have

seen somewhat of a change in the flat spot but not his ears. We will be going

back for another appt. this Friday. I am interested from hearing from another

person from the area.

Sincerely,

[Guest guest]

-There is another Mom who was successful with getting that ins to pay.

I'll try searching, I'll keep ya posted! Kimry

[Guest guest]

In a message dated 6/6/00 12:36:06 PM Pacific Daylight Time,

bosingerwaldronh@... writes:

<< We haven't

been faithful having him wear his helmet because we

don't think it is shaped right. We have an appt at

Children's this Friday with Dr Mulaken (SP?) for a

follow-up. >>

Heidi-Is the shape problem something you think they can readily fix? Do you

think you will need a new helmet? Good luck w/the follow up. I am very

curious to learn how they resolve it for you. Good Luck! Kimry

[Guest guest]

Dear ,

My name is and I am new to this group. My son, Spencer is due to get

his DOC Band at the Cranial Banding Clinic here in Charlotte, NC. But I am

still waiting to hear whether or not our insurance (BCBS of Illinois) is

going to cover this procedure. Previously, I had taken Spencer to Dr.

s at the Charlotte Plastic Surgery Center, and he felt that Spencer

did need to get a DOC Band. He has a very tall head and is very narrow from

front to back and has a small dent on the right side in the back, because

that is the side he favors when sleeping. We are lucky though that his eyes

and ears appear to be symetric, although, to me I think his ears are pretty

far back in his head, probably, because his head is so narrow front to back.

Our pediatrian also had me rotating Spencer from side to side when he slept,

but no matter how hard I tried, he always ended up right on his back again.

Anyway, I got this information from the Cranial Technologies website that a

center is coming to Connecticut soon. That would be a lot closer for you to

come than North Carolina. Maybe worth checking out. My husband and I just

moved down here the end of November and were from CT originally. Here's the

info:

Persing, MD john.persing@...

ph Shin, MD joseph.shin@...

Yale Plastic Surgery

yalesurgery.med.yale.edu

333 Cedar Street, 2YPB

New Haven, CT 06520-8401

203-785-2570

Good luck,

& Spencer

-----Original Message-----

From: melmarty@... [mailto:melmarty@...]

Sent: Tuesday, June 06, 2000 12:42 AM

Plagiocephalyegroups

Subject: Re: Re: Questions re: facial asymmetry

Hi, I am also from Massachusetts. We brought our son to Children's

Hospital..I was wondering which doctor you saw? Our son was 12mm off..that

was a month ago. His ears are also off and his right cheek is more filled

in

than the left. They told us that our only option was to go to North Carolina

for the DOC band. We decided to work with the PT and a rigarous routine of

keeping him off the flat side until his next appt. My husband and I have

seen somewhat of a change in the flat spot but not his ears. We will be

going

back for another appt. this Friday. I am interested from hearing from

another

person from the area.

Sincerely,

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Old school buds here:

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[Guest guest]

Hi ,

We are from MA and our son was given a helmet. He was

11mm off and went to 9mm in two weeks from

repositioning while we awaited the helmet. We haven't

been faithful having him wear his helmet because we

don't think it is shaped right. We have an appt at

Children's this Friday with Dr Mulaken (SP?) for a

follow-up. What time is your appt this Friday? I

guess we might see you there!! Who did you see there?

We got the helmet from NOPCO in Burlington.

Heidi

--- melmarty@... wrote:

> Hi, I am also from Massachusetts. We brought our son

> to Children's

> Hospital..I was wondering which doctor you saw? Our

> son was 12mm off..that

> was a month ago. His ears are also off and his

> right cheek is more filled in

> than the left. They told us that our only option was

> to go to North Carolina

> for the DOC band. We decided to work with the PT and

> a rigarous routine of

> keeping him off the flat side until his next appt.

> My husband and I have

> seen somewhat of a change in the flat spot but not

> his ears. We will be going

> back for another appt. this Friday. I am interested

> from hearing from another

> person from the area.

> Sincerely,

>

>

__________________________________________________

[Guest guest]

our niece is also seen by children's hospital in boston.we see dr.liliana

gorbnagorova.i think that's how you spell her name.she is in the neurosurgery

dept. olivia has moderate plagiocephaly.she wears a helmet which we were

fitted for downstairs in the nopco shop at children's.i was very concerned

with her facial assymetry.she had a flattening of the right side in the back

and a pronounced bulge on the back left.her ears are still off.but the facial

symmetry has come out beautiful.she stillhas full cheeks but her mom (i'm her

aunt and have custody) has very full cheeks and high cheekbones (lucky girl)

so hat could just be part of her biology. check with someone else at

children's. and look into a helmet.i am no expert believe me but if you live

in new england i was told by the orthotist we see for adjustments to the

helmet that the closest doc band is in south carolina.

good luck

lynne and livie.

[Guest guest]

heidi,

olivia wears a helmet also from children's hospital in boston.we are seen at

the boston brace international in avon,ma for adjustments.when i take livie's

helmet off at night for the 1 hour free time i look at it every night and

wonder how the heck they came up with something to fit her head? it's helped

quite a bit but with her not being our bioligical child and on her mom's mass

health,we really had no choice but to go with the helmet. we heard on

friday,that dss who has custody of her( we are considered her foster parents

in the eyes of the department) that she has will be made available for

adoption to our family.when we adopt her,she will be on our health

insurance.i wonder if there are any other adopted children out there who have

been on some type of state run insurance plan and then go onto their adopted

parents insurance plans,if they consider plagio a pre existing condition?

lynne and livie..

[Guest guest]

Kimry-Thanks! Definitely keep me posted.

-----Original Message-----

From: AAKARA@... [mailto:AAKARA@...]

Sent: Tuesday, June 06, 2000 3:49 PM

Plagiocephalyegroups

Subject: Re: Re: Questions re: facial asymmetry

-There is another Mom who was successful with getting that ins to pay.

I'll try searching, I'll keep ya posted! Kimry

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Old school buds here:

1/4057/4/_/689409/_/960320985/

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[Guest guest]

In a message dated 6/6/00 5:21:00 PM Pacific Daylight Time, DOLY1023@...

writes:

<< i wonder if there are any other adopted children out there who have

been on some type of state run insurance plan and then go onto their adopted

parents insurance plans,if they consider plagio a pre existing condition?

>>

Lynne-

Do you think Livie will need a second helmet? Gosh I wonder if they will

consider it a " pre-existing " thing. Like what if she needs something like

speech therapy for jaw problems, or special glasses, etc. would they fight

you? I hope not, The funny thing would be that if they do recognize any

complications down the road as a result of plagio then they would have to

recognize the medical necessity. They cant' have it both ways! Kimry

[Guest guest]

In a message dated 6/6/00 10:26:49 AM Pacific Daylight Time,

kacey@... writes:

<< whether or not our insurance (BCBS of Illinois) is

going to cover this procedure >>

.....Is it an HMO? That is what we have and so far they covered

's helmet at 100%. Belinda(Indiana)

[Guest guest]

, had a harder time when he was casted for second helmet.

The first one was simple and he just briefly cried when his eyes were

covered. Belinda

[Guest guest]

Belinda...we are in the PPO program of BCBS of Illinois. Since it was a

week since Spencer's appt. at Charlotte Plastic Surgery Center, I called

Cranial Technologies in Charlotte this afternoon to see if they had

processed our paperwork yet and had found out about our insurance coverage.

The woman I spoke with said that they got all of our paperwork. Probably

gonna take another week though to here decision from BCBS about coverage.

I'll keep you posted. Thanks! (North Carolina).

P.S. How did do with mold to make his helmet? I'm nervous about

Spencer going through that.

-----Original Message-----

From: bgles2@... [mailto:bgles2@...]

Sent: Tuesday, June 06, 2000 9:58 PM

Plagiocephalyegroups

Subject: Re: Re: Questions re: facial asymmetry

In a message dated 6/6/00 10:26:49 AM Pacific Daylight Time,

kacey@... writes:

<< whether or not our insurance (BCBS of Illinois) is

going to cover this procedure >>

.....Is it an HMO? That is what we have and so far they covered

's helmet at 100%. Belinda(Indiana)

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[Guest guest]

Kimry,

I'm not sure if they will make a new helmet or not. I

guess I'll find out Friday what they think. I'll keep

you posted.

Heidi

--- AAKARA@... wrote:

> In a message dated 6/6/00 12:36:06 PM Pacific

> Daylight Time,

> bosingerwaldronh@... writes:

>

> << We haven't

> been faithful having him wear his helmet because we

> don't think it is shaped right. We have an appt at

> Children's this Friday with Dr Mulaken (SP?) for a

> follow-up. >>

> Heidi-Is the shape problem something you think they

> can readily fix? Do you

> think you will need a new helmet? Good luck w/the

> follow up. I am very

> curious to learn how they resolve it for you. Good

> Luck! Kimry

>

__________________________________________________

[Guest guest]

Lynne,

That would be great if you could adopt Livie. I don't

think the same rules apply anymore for pre-existing

conditions and insurance. I think the insurance has

to cover you regardless. It should not be much of a

problem with Livie since she already has the helmet

paid for. Good luck!

Heidi

OLY1023@... wrote:

> heidi,

> olivia wears a helmet also from children's hospital

> in boston.we are seen at

> the boston brace international in avon,ma for

> adjustments.when i take livie's

> helmet off at night for the 1 hour free time i look

> at it every night and

> wonder how the heck they came up with something to

> fit her head? it's helped

> quite a bit but with her not being our bioligical

> child and on her mom's mass

> health,we really had no choice but to go with the

> helmet. we heard on

> friday,that dss who has custody of her( we are

> considered her foster parents

> in the eyes of the department) that she has will be

> made available for

> adoption to our family.when we adopt her,she will be

> on our health

> insurance.i wonder if there are any other adopted

> children out there who have

> been on some type of state run insurance plan and

> then go onto their adopted

> parents insurance plans,if they consider plagio a

> pre existing condition?

> lynne and livie..

>

__________________________________________________

[Guest guest]

--

My son Will has brachycephaly too! He has the regular band that goes

over the forehead. The brachy band is a beret-like affair that holds on

to only the back and sides of the head. There's nothing across the forehead.

No velcro strap either. It looks easier to pull off, especially when

they get older. But it doesn't get in the way of forehead nuzzling!

Good luck with your son!

Shari

's mom

wrote:

Belinda, That is good to hear. Not

sure though what kind of band

Spencer will get, as he has brachycephaly (flattening of back of

head). Girl at Cranial Tech. said that he needs a brachy

band

(whatever that is). Well, I'll keep positive that it won't

be too

bad an experience.

Wish I knew what this brachy band looks like. Anyone know?

--

[Guest guest]

Thanks Shari for the info. That helps a lot! Do you have a picture of wearing his? Just curious.

Spencer's Mom

-----Original Message-----From: Shari Wendt [mailto:sharipaul@...]Sent: Wednesday, June 07, 2000 1:30 AMPlagiocephalyegroupsSubject: Re: Re: Questions re: facial asymmetry-- My son Will has brachycephaly too! He has the regular band that goes over the forehead. The brachy band is a beret-like affair that holds on to only the back and sides of the head. There's nothing across the forehead. No velcro strap either. It looks easier to pull off, especially when they get older. But it doesn't get in the way of forehead nuzzling! Good luck with your son! Shari 's mom wrote: Belinda, That is good to hear. Not sure though what kind of band Spencer will get, as he has brachycephaly (flattening of back of head). Girl at Cranial Tech. said that he needs a brachy band (whatever that is). Well, I'll keep positive that it won't be too bad an experience. Wish I knew what this brachy band looks like. Anyone know? --

[Guest guest]

you know what? we were wondering if livie would need a second helmet just

today! my husband took her for an adjustment and told the orthotist that they

said she'd be done on july 4th.he looked at my husband said he wouldn't

recommend it to come off that early and to consider wearing it through the

end of july anyway to fill in the back of her head on the affected side(right

back lobe). i have a phone call into the neuro but have not heard back(not a

surprise).i will keep you informed.thanks

lynne and livie.

[Guest guest]

thanks for your good thoughts...i think the adoption will benefit everyone.

lynne and livie.

[Guest guest]

Lynne:

Will your sister cooperate or fight? I hope she knows what is

best for the little ones. Will your mother adopt the other one?

Kendra

DOLY1023@... wrote:

thanks for your good thoughts...i think the adoption

will benefit everyone.

lynne and livie.

[Guest guest]

kendra,

it looks like it will be one big fight from my sister.we heard from dss

yesterday that they plan to go to court june 22.that's my husband's 41st

birthday.we were also offered a restraining order against my sister for that

day.what a birthday present for him...a daughter to be and a restraining

order..happy birthday.my parents don't plan on adopting livie's sister

because her dad will be obtaining permanent custody.all that really means

though is that he will have legal custody but she will still live with my

parents because of her disability.she has a form of muscular dystrophy and

can't really handle the stairs too well in her dad's house.my parents live in

a ranch style house plus we'll be right next door when we buy our house.

lynne and livie.

[Guest guest]

In a message dated 6/9/00 6:22:39 PM Pacific Daylight Time, DOLY1023@...

writes:

<< it looks like it will be one big fight from my sister.we heard from dss

yesterday that they plan to go to court june 22.that's my husband's 41st

birthday.we were also offered a restraining order against my sister for that

day.what a birthday present for him...a daughter to be and a restraining

order >>

Lynne-Wow! June instead of July, yikes! Are you just absolutely flipping

out? What will your sister do? How weird to have your relationship end up

needing a restraining order, ouch! Why has she been so " involved " ( & I use

that word lightly) by going to Livie's appts? Is she expecting this? Best

of luck! Kimry

[Guest guest]

Lynne:

All I can say is WoW!

Where did the black sheep come from in this family? You all sound

like a bunch of saints.

Good luck to you all!

Kendra

DOLY1023@... wrote:

kendra,

it looks like it will be one big fight from my sister.we heard

from dss

yesterday that they plan to go to court june 22.that's my husband's

41st

birthday.we were also offered a restraining order against my sister

for that

day.what a birthday present for him...a daughter to be and a restraining

order..happy birthday.my parents don't plan on adopting livie's

sister

because her dad will be obtaining permanent custody.all that really

means

though is that he will have legal custody but she will still live

with my

parents because of her disability.she has a form of muscular dystrophy

and

can't really handle the stairs too well in her dad's house.my parents

live in

a ranch style house plus we'll be right next door when we buy our

house.

lynne and livie.

[Guest guest]

kimry,

susan and i have never had the loving sister relationship she likes to think

we have.she always considered me to be the goody goody.which i believe to be

the truth compared to what she is. we also have a brother younger than both

of us.i'm the oldest,then susan,then frank. there's about 2 1/2 years

difference between me and susan and 5 from me and frank. susan has a problem

with being the middle child as well. it's hard for anyone to understand what

the heck happens in my family on a daily basis,never mind you good souls who

listen(or read) about it. she doesn't know about june 22 yet. i believe she

will be being served with court papers this week notifying her. then it will

all hit the fan believe me. i think at this point we all need some kind of

closure on this. my mother had to go pick up my niece(livie's 1/2 sister) at

susan's today because her father dropped her off to go to a carnival that was

in town.my sister must have been drinking or on drugs because marissa called

my mom and started crying that mommy was acting weird again and that she was

scared. that's the last straw for my mother.it's a good thing she didn't call

looking to visit with livie today. i figured i'd see her at the carnival last

night because that's her element if you know what i mean.living like a

carnival type person. anyway i called dss to request a random drug screen for

her for tomorrow.if they can locate her. maybe if i have any luck,she'll have

run away with the carnival??

thanks for your good thoughts...

lynne and livie.