Re: New to group - inspired & would love to hear ideas

[Guest guest]

I feel the same way you do about informing other families about this.

is's ped. never even mentioned her hed shape to us. She was ready

to send us out the door after her check up. As she was walking out I

stopped her and said to her do you not notice my daughters head. I

know this is not normal, and do you not notice that she can not turn

her head in both directions at all. And the doctor walks back in

looks at her head (by the way I have been holding is's back

facing the doctor the whole time before I mentioned this to her to

see if she would say anything, so the doctor had to have seen this.)

and says yeah I was going to mention that. Have you tried this and

that and this, and I said yes I have tried everyhing repositioning

thing I can think of and the internet has offered me. So then she

says ok well i guess she needs to go to PT, and maybe then her head

will round out on its own. So I took her to PT for a while and the

physical therapist said that there is no way her head will round out

from just PT she will need a helmet. Well of coarse this is the first

we have even heard of the helmet because the doctor never mentioned

it to us so we thought that it all would go away when her tort. was

managed. So then the PT sent a reconmendation to the DR to send us to

get a STAR scan done and it took the DR forever to send us. Aand then

we had to wait on our insuance, which thank God it didn't take long

at all they agreed that is needed it. So our problem wasn't the

insurance it was the Doctor, which really makes me want to inform

parents of newborns about this because the hospitals aren't telling

you and well the doctors at least here where I live aren't telling

you either even if they see it in the baby and know it. Wwho know

if is Dr would have ever said anything or is she would have

waited so long that is would have to have surgery so that they

could make more money. (The hospital and this DR office work

together).

So if someone has ways to inform people through the hospital and DR

offices please please please let me know also.

Alisha and is

>

> I've found so much comfort and strength in reading your entries for

> the last couple of weeks. So many of your stories sound so much

like

> ours. Thank you for sharing!

>

> Our son ph will be nearly 11 months old when he finally gets

his

> STARband next Friday. After fighting Blue Shield and CCS (state

> program) for months, we recently found success with Blue Cross.

This

> process has been so exhausting -- dismissive doctors, fighting

> insurance companies, etc.. I'm still angry about what we went

> through, but want to do something positive with my feelings.

> I wish someone had educated us on tort/plagio early on -- we lost a

> lot of time. ph was 7 months when we were finally referred to

> CIRS for a helmet eval.

> I am inspired to do something to help educate other families. I

have

> an idea to push our local hospitals to send home information on

these

> conditions, importance of tummy time and positioning, etc. with

every

> new baby/family. We received a nice packet of information from the

> hospital after ph's birth, but absolutely nothing like this. I

> think this type of info. early on could help with prevention/early

> intervention. Have any of you petitioned your local

hospitals/health

> centers to give out this type of info.? How did you go about

this?

> Any other ideas to get the word out?

>

> Also, re: helmet, do you keep the baby's hair trimmed really short

to

> help with heat/sweat? If so, what do you do and how often? We've

> never cut ph's hair before.

> Lastly, I'd love to meet some local families. Are any of you from

> the Santa Cruz/Monterey/San , CA area?

>

> Thanks!

> Marina – Santa Cruz, CA

> Mommy to ph – 10 mos

> right tort/left plagio, STARband next week!

>

[Guest guest]

Alisha, thanks for the response. It's so frustrating that so many

doctors take such a passive approach. We had to push our ped to give

us a diagnosis. It wasn't until his colleague pushed the helmet that

he jumped on board by giving us the referral. Up until then, he

insisted it would correct on it's own. I'm happy for you and is

that you'll have her helmet soon. Sounds like she's still at a great

age to start this process. I'm a little concerned about how much

progress we'll see in my son at 11 mos.. Trying to stay optimistic!

-Marina

Mommy to ph, 10 mos., STARband next Friday!

>

> I feel the same way you do about informing other families about

this.

> is's ped. never even mentioned her hed shape to us. She was

ready

> to send us out the door after her check up. As she was walking out

I

> stopped her and said to her do you not notice my daughters head. I

> know this is not normal, and do you not notice that she can not

turn

> her head in both directions at all. And the doctor walks back in

> looks at her head (by the way I have been holding is's back

> facing the doctor the whole time before I mentioned this to her to

> see if she would say anything, so the doctor had to have seen

this.)

> and says yeah I was going to mention that. Have you tried this and

> that and this, and I said yes I have tried everyhing repositioning

> thing I can think of and the internet has offered me. So then she

> says ok well i guess she needs to go to PT, and maybe then her head

> will round out on its own. So I took her to PT for a while and the

> physical therapist said that there is no way her head will round

out

> from just PT she will need a helmet. Well of coarse this is the

first

> we have even heard of the helmet because the doctor never mentioned

> it to us so we thought that it all would go away when her tort. was

> managed. So then the PT sent a reconmendation to the DR to send us

to

> get a STAR scan done and it took the DR forever to send us. Aand

then

> we had to wait on our insuance, which thank God it didn't take long

> at all they agreed that is needed it. So our problem wasn't

the

> insurance it was the Doctor, which really makes me want to inform

> parents of newborns about this because the hospitals aren't telling

> you and well the doctors at least here where I live aren't telling

> you either even if they see it in the baby and know it. Wwho

know

> if is Dr would have ever said anything or is she would have

> waited so long that is would have to have surgery so that they

> could make more money. (The hospital and this DR office work

> together).

>

> So if someone has ways to inform people through the hospital and DR

> offices please please please let me know also.

>

>

> Alisha and is

[Guest guest]

Welcome to the group! We got our band from CIRS in Oakland last

year. I imagine you are going to the Palo Alto office?

When my son got his band we did not cut his hair even though it was

really long. I just used a comb to comb his hair up to the top so it

came out the top of the band

(http://health.ph./group/Plagiocephaly/photos/view/6e1

1?b=21). Eventually we did get the hair on the side of his head cut

because it was looking obnoxious hanging out the sides :>) So, don't

feel like you need to get your son's hair cut.

To get the word out about his band, I wrote an article for my local

mothers club newsletter

(http://f1.grp.fs.com/v1/gGOZRpZPn1DowlE_RLY6fcg5S7-

VWWowjtht1QUpNw5nVXnsuPe4dzVcre6lqKhrhIHhOAaR4C62ryPRAM8/News%

20Articles%20about%20plagio%20babies%20or%20about%20helmets%20in%

20genera/HelmetHeadFinal.pdf).

We are somewhat local to you, living up in Novato, although I did

grow up in San .

Best of luck with the new band!

Molly

California

Nicolas, 21 months, tort & plagio, STARband 4/25/06-9/12/06,

Graduate!

, 4

, 7.5

>

> I've found so much comfort and strength in reading your entries for

> the last couple of weeks. So many of your stories sound so much

like

> ours. Thank you for sharing!

>

> Our son ph will be nearly 11 months old when he finally gets

his

> STARband next Friday. After fighting Blue Shield and CCS (state

> program) for months, we recently found success with Blue Cross.

This

> process has been so exhausting -- dismissive doctors, fighting

> insurance companies, etc.. I'm still angry about what we went

> through, but want to do something positive with my feelings.

> I wish someone had educated us on tort/plagio early on -- we lost a

> lot of time. ph was 7 months when we were finally referred to

> CIRS for a helmet eval.

> I am inspired to do something to help educate other families. I

have

> an idea to push our local hospitals to send home information on

these

> conditions, importance of tummy time and positioning, etc. with

every

> new baby/family. We received a nice packet of information from the

> hospital after ph's birth, but absolutely nothing like this. I

> think this type of info. early on could help with prevention/early

> intervention. Have any of you petitioned your local

hospitals/health

> centers to give out this type of info.? How did you go about

this?

> Any other ideas to get the word out?

>

> Also, re: helmet, do you keep the baby's hair trimmed really short

to

> help with heat/sweat? If so, what do you do and how often? We've

> never cut ph's hair before.

> Lastly, I'd love to meet some local families. Are any of you from

> the Santa Cruz/Monterey/San , CA area?

>

> Thanks!

> Marina – Santa Cruz, CA

> Mommy to ph – 10 mos

> right tort/left plagio, STARband next week!

>

[Guest guest]

Hi Marina,

we are in redwood city and went to CIRS in palo alto. My daughter wore

a starband from june to october last year and did really well (she

started at 5 mo old). Sydney had hair when we started, but it mostly

fell out the first month she was in the band :-( It grew back just

fine, and most babies don't lose their hair, so I wouldn't worry about it.

I hope ph does well in his band.

take care. -christine

sydney 18 mo starband grad

>

> I've found so much comfort and strength in reading your entries for

> the last couple of weeks. So many of your stories sound so much like

> ours. Thank you for sharing!

>

> Our son ph will be nearly 11 months old when he finally gets his

> STARband next Friday. After fighting Blue Shield and CCS (state

> program) for months, we recently found success with Blue Cross. This

> process has been so exhausting -- dismissive doctors, fighting

> insurance companies, etc.. I'm still angry about what we went

> through, but want to do something positive with my feelings.

> I wish someone had educated us on tort/plagio early on -- we lost a

> lot of time. ph was 7 months when we were finally referred to

> CIRS for a helmet eval.

> I am inspired to do something to help educate other families. I have

> an idea to push our local hospitals to send home information on these

> conditions, importance of tummy time and positioning, etc. with every

> new baby/family. We received a nice packet of information from the

> hospital after ph's birth, but absolutely nothing like this. I

> think this type of info. early on could help with prevention/early

> intervention. Have any of you petitioned your local hospitals/health

> centers to give out this type of info.? How did you go about this?

> Any other ideas to get the word out?

>

> Also, re: helmet, do you keep the baby's hair trimmed really short to

> help with heat/sweat? If so, what do you do and how often? We've

> never cut ph's hair before.

> Lastly, I'd love to meet some local families. Are any of you from

> the Santa Cruz/Monterey/San , CA area?

>

> Thanks!

> Marina – Santa Cruz, CA

> Mommy to ph – 10 mos

> right tort/left plagio, STARband next week!

>

[Guest guest]

Yes is is still at a good age for her band but I worried at first

about her age because we were first refered for the band when she was

3 months, well of coarse we had to wait till she was even 4 month to

be able to get it and then with the offices avalibility and waiting

on insurance she now won't have it till she s nearly 7 months. But I

keep reminding myself that the sooner the better, and if 7 months is

the sooner than it better and a year, and in your case if 11 months

is better its better than a year or more as well.

Alisha and is

> >

> > I feel the same way you do about informing other families about

> this.

> > is's ped. never even mentioned her hed shape to us. She was

> ready

> > to send us out the door after her check up. As she was walking

out

> I

> > stopped her and said to her do you not notice my daughters head.

I

> > know this is not normal, and do you not notice that she can not

> turn

> > her head in both directions at all. And the doctor walks back in

> > looks at her head (by the way I have been holding is's back

> > facing the doctor the whole time before I mentioned this to her

to

> > see if she would say anything, so the doctor had to have seen

> this.)

> > and says yeah I was going to mention that. Have you tried this

and

> > that and this, and I said yes I have tried everyhing

repositioning

> > thing I can think of and the internet has offered me. So then she

> > says ok well i guess she needs to go to PT, and maybe then her

head

> > will round out on its own. So I took her to PT for a while and

the

> > physical therapist said that there is no way her head will round

> out

> > from just PT she will need a helmet. Well of coarse this is the

> first

> > we have even heard of the helmet because the doctor never

mentioned

> > it to us so we thought that it all would go away when her tort.

was

> > managed. So then the PT sent a reconmendation to the DR to send

us

> to

> > get a STAR scan done and it took the DR forever to send us. Aand

> then

> > we had to wait on our insuance, which thank God it didn't take

long

> > at all they agreed that is needed it. So our problem wasn't

> the

> > insurance it was the Doctor, which really makes me want to inform

> > parents of newborns about this because the hospitals aren't

telling

> > you and well the doctors at least here where I live aren't

telling

> > you either even if they see it in the baby and know it. Wwho

> know

> > if is Dr would have ever said anything or is she would have

> > waited so long that is would have to have surgery so that

they

> > could make more money. (The hospital and this DR office work

> > together).

> >

> > So if someone has ways to inform people through the hospital and

DR

> > offices please please please let me know also.

> >

> >

> > Alisha and is

>

[Guest guest]

the link to the article for the paper does not work could you try to

ost it again I would like to look at that.

> >

> > I've found so much comfort and strength in reading your entries

for

> > the last couple of weeks. So many of your stories sound so much

> like

> > ours. Thank you for sharing!

> >

> > Our son ph will be nearly 11 months old when he finally gets

> his

> > STARband next Friday. After fighting Blue Shield and CCS (state

> > program) for months, we recently found success with Blue Cross.

> This

> > process has been so exhausting -- dismissive doctors, fighting

> > insurance companies, etc.. I'm still angry about what we went

> > through, but want to do something positive with my feelings.

> > I wish someone had educated us on tort/plagio early on -- we lost

a

> > lot of time. ph was 7 months when we were finally referred

to

> > CIRS for a helmet eval.

> > I am inspired to do something to help educate other families. I

> have

> > an idea to push our local hospitals to send home information on

> these

> > conditions, importance of tummy time and positioning, etc. with

> every

> > new baby/family. We received a nice packet of information from

the

> > hospital after ph's birth, but absolutely nothing like this.

I

> > think this type of info. early on could help with

prevention/early

> > intervention. Have any of you petitioned your local

> hospitals/health

> > centers to give out this type of info.? How did you go about

> this?

> > Any other ideas to get the word out?

> >

> > Also, re: helmet, do you keep the baby's hair trimmed really

short

> to

> > help with heat/sweat? If so, what do you do and how often?

We've

> > never cut ph's hair before.

> > Lastly, I'd love to meet some local families. Are any of you

from

> > the Santa Cruz/Monterey/San , CA area?

> >

> > Thanks!

> > Marina – Santa Cruz, CA

> > Mommy to ph – 10 mos

> > right tort/left plagio, STARband next week!

> >

>

[Guest guest]

Molly, thanks for the message. Good to know we have the option of

not cutting my son's beautiful hair!

Also, I would love to see the article you wrote. Could you try

posting it again and/or maybe send it as an attachment to my email

address.

Thanks!

Marina

Mommy to ph, 10 mos., STARband in 5 days!

>

> Welcome to the group! We got our band from CIRS in Oakland last

> year. I imagine you are going to the Palo Alto office?

>

> When my son got his band we did not cut his hair even though it was

> really long. I just used a comb to comb his hair up to the top so

it

> came out the top of the band

>

(http://health.ph./group/Plagiocephaly/photos/view/6e1

> 1?b=21). Eventually we did get the hair on the side of his head

cut

> because it was looking obnoxious hanging out the sides :>) So,

don't

> feel like you need to get your son's hair cut.

>

> To get the word out about his band, I wrote an article for my local

> mothers club newsletter

> (http://f1.grp.fs.com/v1/gGOZRpZPn1DowlE_RLY6fcg5S7-

> VWWowjtht1QUpNw5nVXnsuPe4dzVcre6lqKhrhIHhOAaR4C62ryPRAM8/News%

> 20Articles%20about%20plagio%20babies%20or%20about%20helmets%20in%

> 20genera/HelmetHeadFinal.pdf).

>

> We are somewhat local to you, living up in Novato, although I did

> grow up in San .

>

> Best of luck with the new band!

>

> Molly

> California

> Nicolas, 21 months, tort & plagio, STARband 4/25/06-9/12/06,

> Graduate!

> , 4

> , 7.5

[Guest guest]

, so wonderful to meet someone who has used CIRS in palo

alto! Who did you work with? How was your experience?

We've had positive experiences so far with both Amy and -- both

seem very knowledgeable, patient, and supportive.

Also, do you know of any local support groups (local in Santa Clara

area would be great -- only a 30-45 min drive from Santa Cruz) for

families dealing with tort/plagio?

Thanks!

Marina

P.S. Sydney's adorable! Thanks for sharing your story!

>

> Hi Marina,

> we are in redwood city and went to CIRS in palo alto. My daughter wore

> a starband from june to october last year and did really well (she

> started at 5 mo old). Sydney had hair when we started, but it mostly

> fell out the first month she was in the band :-( It grew back just

> fine, and most babies don't lose their hair, so I wouldn't worry

about it.

> I hope ph does well in his band.

> take care. -christine

> sydney 18 mo starband grad

[Guest guest]

Very true! I try to think this way -- At least it's early enough to do

something.

Thanks for the positive thinking!

>

> Yes is is still at a good age for her band but I worried at first

> about her age because we were first refered for the band when she was

> 3 months, well of coarse we had to wait till she was even 4 month to

> be able to get it and then with the offices avalibility and waiting

> on insurance she now won't have it till she s nearly 7 months. But I

> keep reminding myself that the sooner the better, and if 7 months is

> the sooner than it better and a year, and in your case if 11 months

> is better its better than a year or more as well.

>

>

> Alisha and is

[Guest guest]

Hi Marina,

I worked with Bob mostly. I'm not sure if is new. I just knew

Amy and Bob. Bob has been doing bands for a million years. Amy did our

first scan for the band, but was on vacation when it was ready so Bob

did the initial adjustment and most of the others. Bob is very

experienced, but Amy has a little more charm. I like them both. I

don't know who is.

The only support group I know about is this one - Amy told me about it

when I asked about support groups. I still haven't run into any other

banded babies outside CIRS office, even though I live near Palo Alto

and I'm sure they must be around.

CIRS recently moved to a new building - how is it? The old one was

pretty dingy and initially I wasn't impressed, but Amy and Bob made me

very comfortable. I hope the new office is a little better atmosphere.

I don't know anyone else working with CIRS right now, but maybe some

other mom will reply. I hope you have a good experience with ph's

band. Have you posted any pics of him?

-christine

sydney 18 mo starband grad

> >

> > Hi Marina,

> > we are in redwood city and went to CIRS in palo alto. My daughter wore

> > a starband from june to october last year and did really well (she

> > started at 5 mo old). Sydney had hair when we started, but it mostly

> > fell out the first month she was in the band :-( It grew back just

> > fine, and most babies don't lose their hair, so I wouldn't worry

> about it.

> > I hope ph does well in his band.

> > take care. -christine

> > sydney 18 mo starband grad

>

[Guest guest]

Hi Marina I actually lived in Santa Cruz for 10 years (about 10 years ago) and currently live in San . I also went to CIRS in Palo Alto, Bob was my inital Ortho but he and I had a major mis-understanding towards the end of our treatment and I switched to Amy for our last two appointments and will continue seeing her for our follow up appointment in November. I like you did not receive ANY information from our hospital (Kaiser) when we came home, however I have noticed from reading thru the postings, that Kaiser is more pro-active on getting our kids in to see the right people and getting treatment started with no hassles, more so than any other insurance carrier I've read about so far. We didn't cut my son's hair at all thru the process since i wanted to wait until he was 1 to do his first cut, but after the first week to week and a half, he didn't sweat that much and he didn't really

have that much hair for us to contend with. We were also lucky enough to be banded in the winter/early spring time so heat was not such a big issue for us. Good Luck with your band and please feel free to ask any questions about CIRS......Or the band, or aftercare, etc. etc. good luck! Mother to , ONE YEARS OLD NEXT WEEK!, Starbanded 1/11/07-5/23/07 "In the depths of winter, I finally found there was in me an invincible summer."

[Guest guest]

, thanks for the feedback. We really like Amy too, haven't

met Bob, and are wanting to know more about . She seems

friendly and knowledgeable, but was a little rushed at our last visit.

The new office is nicer -- especially parking. But the environment

is still somewhat sterile and cold. I wish they'd warm it up a bit

with some colorful paintings or something.

I plan on posting a pic of ph within the next couple of days,

maybe a pic of him with and one without the helmet. We are so

excited and a bit anxious...can't wait for Friday.

Wish us luck!

Marina

>

> Hi Marina,

> I worked with Bob mostly. I'm not sure if is new. I just

knew

> Amy and Bob. Bob has been doing bands for a million years. Amy did

our

> first scan for the band, but was on vacation when it was ready so

Bob

> did the initial adjustment and most of the others. Bob is very

> experienced, but Amy has a little more charm. I like them both. I

> don't know who is.

>

> The only support group I know about is this one - Amy told me about

it

> when I asked about support groups. I still haven't run into any

other

> banded babies outside CIRS office, even though I live near Palo Alto

> and I'm sure they must be around.

>

> CIRS recently moved to a new building - how is it? The old one was

> pretty dingy and initially I wasn't impressed, but Amy and Bob made

me

> very comfortable. I hope the new office is a little better

atmosphere.

>

> I don't know anyone else working with CIRS right now, but maybe some

> other mom will reply. I hope you have a good experience with

ph's

> band. Have you posted any pics of him?

> -christine

> sydney 18 mo starband grad

>

[Guest guest]

, thanks for responding. Kind of cool to finally come across

someone who has lived in Santa Cruz Interesting community, isn't

it?

We're scheduled to see on Friday when we get the band and do

the initial adjustments. I'm a little nervous because we haven't

worked with/spoken with her much. Amy's been our primary contact.

Do you have any experience working with ?

I'm sure after Friday, I'll really be looking to you all for advice,

etc.. and I'll be sure to post a pic of our little ph.

thanks!

Marina

>

> Hi Marina

>

> I actually lived in Santa Cruz for 10 years (about 10 years ago)

and currently live in San . I also went to CIRS in Palo Alto,

Bob was my inital Ortho but he and I had a major mis-understanding

towards the end of our treatment and I switched to Amy for our last

two appointments and will continue seeing her for our follow up

appointment in November. I like you did not receive ANY information

from our hospital (Kaiser) when we came home, however I have noticed

from reading thru the postings, that Kaiser is more pro-active on

getting our kids in to see the right people and getting treatment

started with no hassles, more so than any other insurance carrier

I've read about so far.

>

> We didn't cut my son's hair at all thru the process since i

wanted to wait until he was 1 to do his first cut, but after the

first week to week and a half, he didn't sweat that much and he

didn't really have that much hair for us to contend with. We were

also lucky enough to be banded in the winter/early spring time so

heat was not such a big issue for us.

>

> Good Luck with your band and please feel free to ask any

questions about CIRS......Or the band, or aftercare, etc. etc.

>

> good luck!

>

> Mother to , ONE YEARS OLD NEXT WEEK!, Starbanded 1/11/07-

5/23/07

>

>

>

>

> " In the depths of winter, I finally found there was in

me an invincible summer. "

>