Re: To Band or Not. Lily! Please read!

[Guest guest]

Lily,

Where in California are you? My wife and I live just North of San

Francisco. Our son, Geoffrey, is 5 mos. old and our pediatricial

also

believes Geoffrey has a borderline case. He wants us to try some

agressive repositioning first before seeing a specialist, but we are

also worried that we *could* be wasting valuable time.

Like your son, Geoffrey's head size was in the 95%-tile at birth. I

think this, along with his LEFT tendancy gave way to the slight

flattening and slightly mis-alligned ears. Also like your son,

Geoffrey has no noticable asymetries in his facial features (besides

the ears).

Your son is a couple months older that Geoffrey and I agree you

should

act fast -- the longer you wait the less likely any asymetry can be

corrected to the degree you want.

We are commited to making a decision by the time Geoffrey is 6 months

old (January 20th). If repositioning is not working, then a device

may

be necessary.

ALSO, like you we have United Healthcare in California (PPO.) So I

would love for you to share with us information in terms of how they

cover specialists, bands, etc.... and we will do the same. Appeals

can

work if there are more cases.

My wife and I can be reached at our email addres:

paulbrunell@...

Thanks,

and Brunell

San , California

> Hello,

> Our son is almost 7 months old and was recently diagnosed with

> plagiocephaly by a neurosurgeon. We were told his case is

> borderline, any worse and he would recommend DOC treatment, any

less

> and he would not recommend treatment. The Dr. didn't mention

> torticollis although our son does favor turning towards the right.

> We received a prescription and made an appointment with Cranial

> Therapies for Thurs for casting.

> We're leaning towards treatment but are still struggling with it.

My

> son has some flattening on the back right side of his head and from

> the top view it looks like his right ear is slightly in front of

his

> left. The right side of his head bulges a little more than the

left

> side. I think his head tends to be a little more elongated as

well.

> There are no noticeable facial asymetries. He also has a large head

> (98%) so I think the abnormalities are more noticeable. I wish I

> could be more certain if his case was mild or moderate.

> I was the first person to notice and have been concerned for a

couple

> of months. My mother/sisters don't seem to think there's a problem

> and think it will fix itself.

> I would be distraught if we didn't do the treatment and his head

> stayed the same/got worse. But, I don't know if his condition is

> severe enough to warrent putting him through the treatment and I'm

> also worried about the $3400 cost. We have United Health Care out

of

> California and I haven't heard good things about their covering

DOC,

> especially if his case is borderline.

> I'm pretty sure we'll go with the treatment, but I just wanted to

see

> if anyone else went through a similar struggle and how you came

about

> your final decision. Thanks very much for any advice or thoughts

you

> may have.

> Lily

[Guest guest]

,

We are in Valencia, California, on the north border of Los Angeles.

We used to live in Sunnyvale so I know where you are in San .

We've decided to set up a consultation ASAP with Cranial Therapies in

Burbank. We want to find out where Drew fits in among other babies

they've treated, how much improvement they expect in his case, how

long they estimate treatment would be for his case, potential

negatives of treatment (skin irritations, discomfort, etc.), and

whether or not they think he may benefit from repositioning alone

(doubtful they would suggest that though). Right now, my husband and

I just don't feel we have enough information to really make a solid

decision, although my gut is telling me to go ahead with the

treatment. I would be happy to let you know what we find out. It

sounds like our boys share a lot of similarities in this.

As you mentioned, time is really key, especially since Drew will be 7

months Jan 17, so we plan on making a decision by this Wed.

As for insurance, my company Hewlett-Packard, just switched to United

Health Care as of Jan 1 (unfortunately), so I haven't had any

experience with them in the past, and what I've heard hasn't been

very promising. I'm a little worried since the plagiocephaly was

primarily a result of sleep position and not a result of other

medical conditions like premature birth, torticollis, etc. So, I

don't know if our claim would be justified, but, we'll try pretty

darn hard to make a case. Again, I'll share my experiences with you

and would appreciate the same.

Where do you plan on pursuing treatment if you decide to? We are

fortunate to have a Cranial Therapies close to us, but I don't recall

there being any locations in Northern Cal.

Please keep us posted on Geoffrey's condition and what you plan on

doing. We are at gpfeiff@...

Regards,

Lily and Pfeiffer

> > Hello,

> > Our son is almost 7 months old and was recently diagnosed with

> > plagiocephaly by a neurosurgeon. We were told his case is

> > borderline, any worse and he would recommend DOC treatment, any

> less

> > and he would not recommend treatment. The Dr. didn't mention

> > torticollis although our son does favor turning towards the

right.

> > We received a prescription and made an appointment with Cranial

> > Therapies for Thurs for casting.

> > We're leaning towards treatment but are still struggling with it.

> My

> > son has some flattening on the back right side of his head and

from

> > the top view it looks like his right ear is slightly in front of

> his

> > left. The right side of his head bulges a little more than the

> left

> > side. I think his head tends to be a little more elongated as

> well.

> > There are no noticeable facial asymetries. He also has a large

head

> > (98%) so I think the abnormalities are more noticeable. I wish

I

> > could be more certain if his case was mild or moderate.

> > I was the first person to notice and have been concerned for a

> couple

> > of months. My mother/sisters don't seem to think there's a

problem

> > and think it will fix itself.

> > I would be distraught if we didn't do the treatment and his head

> > stayed the same/got worse. But, I don't know if his condition is

> > severe enough to warrent putting him through the treatment and

I'm

> > also worried about the $3400 cost. We have United Health Care out

> of

> > California and I haven't heard good things about their covering

> DOC,

> > especially if his case is borderline.

> > I'm pretty sure we'll go with the treatment, but I just wanted to

> see

> > if anyone else went through a similar struggle and how you came

> about

> > your final decision. Thanks very much for any advice or thoughts

> you

> > may have.

> > Lily

[Guest guest]

Lily-

Thanks. For what it's worth, there is a database on this e-group web

site with people who have entered their experiences with various health

insurance companies, where they live, how much they covered (or not),

how many appeals, etc. It looked to me like people who had United

Healthcare in other states were pretty successful. But who knows.

We would probably have to travel to Los Angeles for Geoffrey's

treatment if the DOC band was recommended... not ideal, but a small

expense to pay if Geoffrey's head can be corrected. Funny, your son's

name is Drew... Geoffrey's middle name is Drew, which is my father's

middle name as well.

We're pretty sure Geoffrey's condition was caused by sleep positioning

as well, but there is some evidence in my opinion, to suggest there

could be some torticollis in geoffrey's case -- although we won't know

until we see the specialist. His head never " titled " to the left. He's

always held his head up straight, but almost always favored looking to

the left and thus laying on the left side of his head.

I'm not sure why these messages are not displaying our full email

addresses... but just in case it tries to cut it off again, our email

address is

paulbrunell AT-SIGN home.com

Please keep in touch. I will try to post or email some pictures if I

can get your full email address..

> > > Hello,

> > > Our son is almost 7 months old and was recently diagnosed with

> > > plagiocephaly by a neurosurgeon. We were told his case is

> > > borderline, any worse and he would recommend DOC treatment, any

> > less

> > > and he would not recommend treatment. The Dr. didn't mention

> > > torticollis although our son does favor turning towards the

> right.

> > > We received a prescription and made an appointment with Cranial

> > > Therapies for Thurs for casting.

> > > We're leaning towards treatment but are still struggling with it.

> > My

> > > son has some flattening on the back right side of his head and

> from

> > > the top view it looks like his right ear is slightly in front of

> > his

> > > left. The right side of his head bulges a little more than the

> > left

> > > side. I think his head tends to be a little more elongated as

> > well.

> > > There are no noticeable facial asymetries. He also has a large

> head

> > > (98%) so I think the abnormalities are more noticeable. I wish

> I

> > > could be more certain if his case was mild or moderate.

> > > I was the first person to notice and have been concerned for a

> > couple

> > > of months. My mother/sisters don't seem to think there's a

> problem

> > > and think it will fix itself.

> > > I would be distraught if we didn't do the treatment and his head

> > > stayed the same/got worse. But, I don't know if his condition is

> > > severe enough to warrent putting him through the treatment and

> I'm

> > > also worried about the $3400 cost. We have United Health Care out

> > of

> > > California and I haven't heard good things about their covering

> > DOC,

> > > especially if his case is borderline.

> > > I'm pretty sure we'll go with the treatment, but I just wanted to

> > see

> > > if anyone else went through a similar struggle and how you came

> > about

> > > your final decision. Thanks very much for any advice or thoughts

> > you

> > > may have.

> > > Lily

[Guest guest]

Hi,

My son will be one year January 31st and we were also told to do some

aggressive repositioning and I think we must have kept him sleeping on his

left side for 8 months (he is flattened on the right) and to no avail. We

were casted on the 29th and should get our helmet in 10 days.

I also wonder if there are any genetic ties to this. When I brought my son

in to see the neurosurgeon, he looked at my head and we have similar 'flat

areas'. I have also had problems getting glasses to fit and had to wear

braces on my teeth to realign my bite. Interesting to make the comparisons.

( 1/00)

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

From: paulbrunell@... <paulbrunell@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Sunday, December 31, 2000 6:53 PM

Subject: Re: To Band or Not. Lily! Please read!

>

>Lily,

>Where in California are you? My wife and I live just North of San

>Francisco. Our son, Geoffrey, is 5 mos. old and our pediatricial

>also

>believes Geoffrey has a borderline case. He wants us to try some

>agressive repositioning first before seeing a specialist, but we are

>also worried that we *could* be wasting valuable time.

>

>Like your son, Geoffrey's head size was in the 95%-tile at birth. I

>think this, along with his LEFT tendancy gave way to the slight

>flattening and slightly mis-alligned ears. Also like your son,

>Geoffrey has no noticable asymetries in his facial features (besides

>the ears).

>

>Your son is a couple months older that Geoffrey and I agree you

>should

>act fast -- the longer you wait the less likely any asymetry can be

>corrected to the degree you want.

>

>We are commited to making a decision by the time Geoffrey is 6 months

>old (January 20th). If repositioning is not working, then a device

>may

>be necessary.

>

>ALSO, like you we have United Healthcare in California (PPO.) So I

>would love for you to share with us information in terms of how they

>cover specialists, bands, etc.... and we will do the same. Appeals

>can

>work if there are more cases.

>My wife and I can be reached at our email addres:

>paulbrunell@...

>

>Thanks,

> and Brunell

>San , California

>

>

>

>> Hello,

>> Our son is almost 7 months old and was recently diagnosed with

>> plagiocephaly by a neurosurgeon. We were told his case is

>> borderline, any worse and he would recommend DOC treatment, any

>less

>> and he would not recommend treatment. The Dr. didn't mention

>> torticollis although our son does favor turning towards the right.

>> We received a prescription and made an appointment with Cranial

>> Therapies for Thurs for casting.

>> We're leaning towards treatment but are still struggling with it.

>My

>> son has some flattening on the back right side of his head and from

>> the top view it looks like his right ear is slightly in front of

>his

>> left. The right side of his head bulges a little more than the

>left

>> side. I think his head tends to be a little more elongated as

>well.

>> There are no noticeable facial asymetries. He also has a large head

>> (98%) so I think the abnormalities are more noticeable. I wish I

>> could be more certain if his case was mild or moderate.

>> I was the first person to notice and have been concerned for a

>couple

>> of months. My mother/sisters don't seem to think there's a problem

>> and think it will fix itself.

>> I would be distraught if we didn't do the treatment and his head

>> stayed the same/got worse. But, I don't know if his condition is

>> severe enough to warrent putting him through the treatment and I'm

>> also worried about the $3400 cost. We have United Health Care out

>of

>> California and I haven't heard good things about their covering

>DOC,

>> especially if his case is borderline.

>> I'm pretty sure we'll go with the treatment, but I just wanted to

>see

>> if anyone else went through a similar struggle and how you came

>about

>> your final decision. Thanks very much for any advice or thoughts

>you

>> may have.

>> Lily

>

>

>

>

>

[Guest guest]

--- In Plagiocephalyegroups, " Haeussler " <nhendel@h...>

wrote:

> I also wonder if there are any genetic ties to this.

,

I've wondered the same thing. I was treated for TMJ as a teenager;

when I met up with them, I discovered that my birth mom and

half-sister also had TMJ, too. I noticed for the first

time a couple of weeks ago that my husband's brow line is a little

bit asymmetrical. And I've always been aware that one of my eyes is

rounder than the other one--not by much, but a little.

, Conor's mom

[Guest guest]

when we brought Maggie to the plastic surgeon he looked at both our

heads and said that both my husband and I have ears lower on the

left. ( I always thought it was the sunglasses that were crooked).

No one's head is perfectly symmetrical. Even the doc at the shriners

Hospital told me to look at his assistant and he pointed out the

uneveness in his head. Some heads need to be fixed and some don't.

The question becomes where to draw the line between the two.

Kaycee in Albany, NY

> >> Hello,

> >> Our son is almost 7 months old and was recently diagnosed with

> >> plagiocephaly by a neurosurgeon. We were told his case is

> >> borderline, any worse and he would recommend DOC treatment, any

> >less

> >> and he would not recommend treatment. The Dr. didn't mention

> >> torticollis although our son does favor turning towards the

right.

> >> We received a prescription and made an appointment with Cranial

> >> Therapies for Thurs for casting.

> >> We're leaning towards treatment but are still struggling with it.

> >My

> >> son has some flattening on the back right side of his head and

from

> >> the top view it looks like his right ear is slightly in front of

> >his

> >> left. The right side of his head bulges a little more than the

> >left

> >> side. I think his head tends to be a little more elongated as

> >well.

> >> There are no noticeable facial asymetries. He also has a large

head

> >> (98%) so I think the abnormalities are more noticeable. I wish

I

> >> could be more certain if his case was mild or moderate.

> >> I was the first person to notice and have been concerned for a

> >couple

> >> of months. My mother/sisters don't seem to think there's a

problem

> >> and think it will fix itself.

> >> I would be distraught if we didn't do the treatment and his head

> >> stayed the same/got worse. But, I don't know if his condition is

> >> severe enough to warrent putting him through the treatment and

I'm

> >> also worried about the $3400 cost. We have United Health Care

out

> >of

> >> California and I haven't heard good things about their covering

> >DOC,

> >> especially if his case is borderline.

> >> I'm pretty sure we'll go with the treatment, but I just wanted to

> >see

> >> if anyone else went through a similar struggle and how you came

> >about

> >> your final decision. Thanks very much for any advice or thoughts

> >you

> >> may have.

> >> Lily

> >

> >

> >

> >

> >

[Guest guest]

I agree---everyone's head is a little 'crooked', but I find it interesting

that had I had a band when I was a baby, would I be dealing with/dealt with

problems in my teens and adulthood. I truly thought I was the most paranoid

mom out their (as well as vain) when I kept pestering the MDs about my son's

crooked head. I also worried about how he would handle the casting and the

subsequent wearing of the band, but the casting was a piece of cake and I

hope that the band will be as well. I guess I drew the line when I did a

lot of research and felt I was making the decision in the best interest of

my child with the support of a great neurosurgeon and orthotist.

01/00

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

From: geoconlaw@... <geoconlaw@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Tuesday, January 02, 2001 10:09 AM

Subject: Re: To Band or Not. Lily! Please read!

>when we brought Maggie to the plastic surgeon he looked at both our

>heads and said that both my husband and I have ears lower on the

>left. ( I always thought it was the sunglasses that were crooked).

>No one's head is perfectly symmetrical. Even the doc at the shriners

>Hospital told me to look at his assistant and he pointed out the

>uneveness in his head. Some heads need to be fixed and some don't.

>The question becomes where to draw the line between the two.

>Kaycee in Albany, NY

>

>

>

>> >> Hello,

>> >> Our son is almost 7 months old and was recently diagnosed with

>> >> plagiocephaly by a neurosurgeon. We were told his case is

>> >> borderline, any worse and he would recommend DOC treatment, any

>> >less

>> >> and he would not recommend treatment. The Dr. didn't mention

>> >> torticollis although our son does favor turning towards the

>right.

>> >> We received a prescription and made an appointment with Cranial

>> >> Therapies for Thurs for casting.

>> >> We're leaning towards treatment but are still struggling with it.

>> >My

>> >> son has some flattening on the back right side of his head and

>from

>> >> the top view it looks like his right ear is slightly in front of

>> >his

>> >> left. The right side of his head bulges a little more than the

>> >left

>> >> side. I think his head tends to be a little more elongated as

>> >well.

>> >> There are no noticeable facial asymetries. He also has a large

>head

>> >> (98%) so I think the abnormalities are more noticeable. I wish

>I

>> >> could be more certain if his case was mild or moderate.

>> >> I was the first person to notice and have been concerned for a

>> >couple

>> >> of months. My mother/sisters don't seem to think there's a

>problem

>> >> and think it will fix itself.

>> >> I would be distraught if we didn't do the treatment and his head

>> >> stayed the same/got worse. But, I don't know if his condition is

>> >> severe enough to warrent putting him through the treatment and

>I'm

>> >> also worried about the $3400 cost. We have United Health Care

>out

>> >of

>> >> California and I haven't heard good things about their covering

>> >DOC,

>> >> especially if his case is borderline.

>> >> I'm pretty sure we'll go with the treatment, but I just wanted to

>> >see

>> >> if anyone else went through a similar struggle and how you came

>> >about

>> >> your final decision. Thanks very much for any advice or thoughts

>> >you

>> >> may have.

>> >> Lily

>> >

>> >

>> >

>> >

>> >