2nd band debate

[Guest guest]

lee,

We just got back from a CT in Chicago on Monday. Sierra just turned 17

months, and we are seeing improvement. Her forehead is blending in, and the

broad top of her head is too. We looked at her head on a stick, and at the

base of the neck, and the start of her head, the bones are pushing out. It

was sooo Wonderful to see. I asked Kay about a second Band. Kay

said is was great to see this improvement, and we will take a look in 3

months, and if we decide to have a second band, we will cast instead of

waiting for a month of slow growth. Kay told me that babies in their

second year may have sporadic growth spurts. This is the reason we opting to

have a second band. I haven't contacted her Neurosurgeon about it, because

they didn't feel she could be helped in the first place. So it seems that the

decision making has been up to me and CT. From all the opposing opinions,

maybe its better that way. I will probably be the last member to make this

kind of commute for a band. But it has been well worth it. My husband and I

looked at Sierra's head last night, and I started crying. He told me I was

the best mommy ever!!! Yippee! Good luck in your decision!

Sierra 07/99

11/97

Redford, Michigan

[Guest guest]

lee,

It is a very difficult decision that ultimately resides with you. Even if

you ask your providers " what would you do if it were yours? " they cannot

know. They do not have your child with your situation. Only you can know

what is right for you and Averie. You need only to take their suggestions

and weigh them with other factors to make the decision.

That said, consider:

How noticeable is her head to others who do not know what her situation is.

If you took her out without her band, do people notice?

Do you have people whose opinion you trust that can be objective? They will

tell you what they really feel versus what they believe you want to hear.

Ask them their opinion.

Do you notice the flattening all the time or only when her head is wet?

Do you have to decide this today? You can wait to see how her head looks

when she is closer to actually outgrowing her current band.

Financial aspects may need to be considered as well. I know you had 80%

coverage but that is still 20% out of pocket.

While a rare report has been presented that the flattening returns once

treatment is discontinued, in the vast majority of cases, heads do continue

to improve in symmetry. This is because the main reasons for flattening are

no longer factors. (Baby is not sleeping as long as when only a few months

old, her head is not as soft as it was then, she can reposition herself so

she does not sleep in the same position all the time, Torticollis is

resolved or resolving).

Your instincts will tell you what is ultimately best for your baby. You ( &

Daddy) are the only " experts " as far as Averie is concerned.

And remember to take time to look at Averie without her band it in no way

defines who she is.

Hope this helps,

Rob

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

From: The Bernsteins [mailto:thebernsteins@...]

Sent: Thursday, December 14, 2000 2:11 PM

Plagiocephalyegroups

Subject: 2nd band debate

Hi Everyone,

I have a question regarding a second band and want to see if anyone has had

a similar experience. We were seen yesterday by CT (Averie's been in her

band 8 1/2 weeks), and they said she will probably outgrow this band in the

next 3-4 weeks. They thought she would get more correction from a second

band. The first one took care of her asymmetry and lengthened her head

some, but they think she will get more lengthening with a second band.

Then we saw the neurosurgeon who was very pleased with the results and does

not think she needs a second band, said that we have about 60% correction,

and that the remaining correction will happen on its own. CT told me that

the neuro typically doesn't see the need for a second band, and the neuro

told me that CT will often recommend a second one. It's very confusing! If

we get a second band, Averie will probably only be in it about a month

longer than she would if we use this one until she outgrows it. Any

thoughts, suggestions, etc. would be appreciated!

lee (mom to Averie, 4/23/00)

Atlanta, GA

____________________________________________________________________________

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[Guest guest]

and that the remaining correction will happen on its own.

lee:

Our neuro did a study where he had all banded babies come back at 2

and 4 years of age to compare measurements. He found that all asymmetries

that remained after therapy were still present in years to follow.

On the other hand, you have to take into consideration that any business

is just that - a business, and money is made by selling more product.

If you feel there is still more work to be done, I would go for a second

band.

Kendra

[Guest guest]

lee,

We just made the decision to get a 2nd band and it wasn't easy. Everyone said that Hunter was "boarder line" and that it was really up to us. My husband and I felt like we had to give a 2nd band a chance. Our insurance paid for the 1st fairly quickly and Hunter's measurements (asymmetry) still met the requirements of our insurance. Hunter really never minded the band and our whole family was very supportive so we felt like we had no reason not to get a 2nd band. (Other than the fact that we have to travel 4 hours one-way for the adjustments, but family helps us out a lot!!)

If the orthotists had said that all the correction you are going to get I really feel like I would have been satisfied that we had done all we could do but since there is a chance for more correction I felt like I owed to Hunter to continue!

I have to admit, if our insurance didn't pay the 1st time around our decision may have been different!

I hope this helps. Whatever decision you make I know it will be best for your family!

(Hunter's mom 11/17/99)

Baton Rouge, LA

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

From: The Bernsteins [sMTP:thebernsteins@...]

Sent: Thursday, December 14, 2000 8:11 AM

Plagiocephalyegroups

Subject: 2nd band debate

Hi Everyone,

I have a question regarding a second band and want to see if anyone has had

a similar experience. We were seen yesterday by CT (Averie's been in her

band 8 1/2 weeks), and they said she will probably outgrow this band in the

next 3-4 weeks. They thought she would get more correction from a second

band. The first one took care of her asymmetry and lengthened her head

some, but they think she will get more lengthening with a second band.

Then we saw the neurosurgeon who was very pleased with the results and does

not think she needs a second band, said that we have about 60% correction,

and that the remaining correction will happen on its own. CT told me that

the neuro typically doesn't see the need for a second band, and the neuro

told me that CT will often recommend a second one. It's very confusing! If

we get a second band, Averie will probably only be in it about a month

longer than she would if we use this one until she outgrows it. Any

thoughts, suggestions, etc. would be appreciated!

lee (mom to Averie, 4/23/00)

Atlanta, GA

_____________________________________________________________________________________

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[Guest guest]

lee,

I also wanted to say that I am of the opinion that the correction will be more aggressive with a new band. Remember the band she is wearing now was made from her head shape before treatment. A new band will be made from her head shape NOW! If her head shape had changed a significant amount (like Hunter's has) then a new band made from the new shape would be more effective. It is my opinion that 1 month in a new band would be more beneficial than another month in the old band.

Again, I hope this helps!

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

From: The Bernsteins [sMTP:thebernsteins@...]

Sent: Thursday, December 14, 2000 8:11 AM

Plagiocephalyegroups

Subject: 2nd band debate

Hi Everyone,

I have a question regarding a second band and want to see if anyone has had

a similar experience. We were seen yesterday by CT (Averie's been in her

band 8 1/2 weeks), and they said she will probably outgrow this band in the

next 3-4 weeks. They thought she would get more correction from a second

band. The first one took care of her asymmetry and lengthened her head

some, but they think she will get more lengthening with a second band.

Then we saw the neurosurgeon who was very pleased with the results and does

not think she needs a second band, said that we have about 60% correction,

and that the remaining correction will happen on its own. CT told me that

the neuro typically doesn't see the need for a second band, and the neuro

told me that CT will often recommend a second one. It's very confusing! If

we get a second band, Averie will probably only be in it about a month

longer than she would if we use this one until she outgrows it. Any

thoughts, suggestions, etc. would be appreciated!

lee (mom to Averie, 4/23/00)

Atlanta, GA

_____________________________________________________________________________________

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-------------------------- eGroups Sponsor -------------------------~-~>

eLerts

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[Guest guest]

lee,

Cranial Technologies does not actually prescribe DOC Bands - it is

the clinician's job to tell you whether further treatment could

benefit your child. The final decision rests on the physician and,

most of all, the parents.

I agree with Rob: your feelings on the matter are the most important

issue.

Good luck,

Hodges

Cranial Technologies, Inc.

[Guest guest]

Hi !

I've been 'offline' since Sept. -so I'm really behind in what's been

going on in this group. While I've been gone my daughter Kailey

FINALLY got her DOC band and has been in it a month.

This posting really caught my attention because it's something I

noticed the other day and I've been dwelling on it.

We go to CT in Atlanta also. When my daughter was first casted -they

told us then that she would have a second band most likely. Kailey

was 10 1/2 mos and severe brachycephalic at the time. We've been

praying that she won't because we are paying ourselves.

We have now been to CT 5 times and every visit the waiting room is

full of babies getting their 2nd band or in the 2nd band, or told

they need one. And have you ever noticed the head mold rack in the

corner room there ? Almost every single one of those molds has a

second one ! Anyway, it's just something I've noticed and it's been

on my mind a LOT and then I saw your post.........

Sherrie and nah are really sweet, but I'm not sure how much I

trust them. There's been a few other quirky things I've noticed and

from the months I've belonged to this site and read everyone elses

posts - something just seems 'off' there.

I would love to know how many other Atlanta parents have been told to

go with a second one ? and if they were happy with the results ? I'm

not sure what WE will do if told Kay needs a second one - Right now

that's my biggest fear..........

Best of Luck in making your decision - I'll be thinking about you !

Ft. Benning, GA

- In Plagiocephalyegroups, " The Bernsteins " <thebernsteins@h...>

wrote:

> Hi Everyone,

>

> I have a question regarding a second band and want to see if anyone

has had

> a similar experience. We were seen yesterday by CT (Averie's been

in her

> band 8 1/2 weeks), and they said she will probably outgrow this

band in the

> next 3-4 weeks. They thought she would get more correction from a

second

> band. The first one took care of her asymmetry and lengthened her

head

> some, but they think she will get more lengthening with a second

band.

>

> Then we saw the neurosurgeon who was very pleased with the results

and does

> not think she needs a second band, said that we have about 60%

correction,

> and that the remaining correction will happen on its own. CT told

me that

> the neuro typically doesn't see the need for a second band, and the

neuro

> told me that CT will often recommend a second one. It's very

confusing! If

> we get a second band, Averie will probably only be in it about a

month

> longer than she would if we use this one until she outgrows it.

Any

> thoughts, suggestions, etc. would be appreciated!

>

> lee (mom to Averie, 4/23/00)

> Atlanta, GA

>

______________________________________________________________________

_______________

> Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

We debated over a second band for our son. He had severe plagio. We are

very pleased that we went with the second band. He has 5 mm correction in

length and 8 mm correction in symmetry. We couldn't be happier. I know

every case is different but I hope this helps.

Kathy & Donnie (8/19/00)

[Guest guest]

Sherrie and nah are really sweet, but I'm not sure how much I

trust them. There's been a few other quirky things I've noticed and

from the months I've belonged to this site and read everyone elses

posts - something just seems 'off' there.

:

If this is so, then I would email or call the Cranial Tech. head office

in Phoenix. Even if they don't say much to you about it, I'm sure

that they would check into it. After all, it is their business, and

if some of their clinics start "scamming" people, it's a pretty hefty price

to pay with their reputation!

Kendra

[Guest guest]

Kendra,

Thanks for the advice.

But, I'm most likely just being a paraniod Mom with too much free

time. I guess I'm really just wondering why my cheap software can

remind me

of when my bills are due, but their business software can't tell them

whose bills are due and when ! Then again maybe it's just my luck !

ha ha ! -

In Plagiocephalyegroups, & Kendra <kbgarv@t...> wrote:

> > Sherrie and nah are really sweet, but I'm not sure how much I

> > trust them. There's been a few other quirky things I've noticed

and

> > from the months I've belonged to this site and read everyone elses

> > posts - something just seems 'off' there.

> >

> :

>

> If this is so, then I would email or call the Cranial Tech. head

office

> in Phoenix. Even if they don't say much to you about it, I'm sure

that

> they would check into it. After all, it is their business, and if

some

> of their clinics start " scamming " people, it's a pretty hefty price

to

> pay with their reputation!

>

> Kendra

[Guest guest]

,

If you do follow up with CT in Phoenix, please post the response you get on

this group. I am very interested because we are also going to the Atlanta

CT clinic. I have felt comfortable with things so far, but now I'm

wondering if I'm being naive and " buying into " things a little too much.

lee

>From: & Kendra <kbgarv@...>

>Reply-Plagiocephalyegroups

>Plagiocephalyegroups

>Subject: Re: Re: 2nd band debate

>Date: Fri, 15 Dec 2000 11:46:54 -0700

>

> > Sherrie and nah are really sweet, but I'm not sure how much I

> > trust them. There's been a few other quirky things I've noticed and

> > from the months I've belonged to this site and read everyone elses

> > posts - something just seems 'off' there.

> >

>:

>

>If this is so, then I would email or call the Cranial Tech. head office

>in Phoenix. Even if they don't say much to you about it, I'm sure that

>they would check into it. After all, it is their business, and if some

>of their clinics start " scamming " people, it's a pretty hefty price to

>pay with their reputation!

>

>Kendra

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi !

Thanks for posting-, but I know I won't say any more about it.

I didn't mean to sound like I thought I was being scammed by them or

anything. I don't feel that way. They are just a business trying to

offer a much needed ( and wonderfully effective) product and using

what is probably normal business practices in their situation.

My thing is - I'm just worried about being told we need a second

band . See, my Neuro and Ped. don't support the band anyway. If told

by highly trained and very experienced tech.'s that she needs one - I

can't just ask my Dr.'s about it - they think she's fine now ! I'm

in the medical field and it is my feeling that those 2 girls there

are more of the expert on this whole thing than either of my Dr.'s

are, so I would normally go with their judgement, but suddenly it

seems that the second band is indicated an awful lot more than at

some of the other offices and now I'm not sure if I WOULD go with a

second band.

As far as using My own opinion goes - FORGET IT - I'm the last

person who would be able to tell if Kay could do even better or not -

I see her everyday !

I REALLY didn't mean to cause a fuss here - I'm a psycho Mom and all

and it IS the holidays !!!!!!!!!!!

-- In Plagiocephalyegroups, " The Bernsteins "

<thebernsteins@h...> wrote:

> ,

>

> If you do follow up with CT in Phoenix, please post the response

you get on

> this group. I am very interested because we are also going to the

Atlanta

> CT clinic. I have felt comfortable with things so far, but now I'm

> wondering if I'm being naive and " buying into " things a little too

much.

>

> lee

>

> >From: & Kendra <kbgarv@t...>

> >Reply-Plagiocephalyegroups

> >Plagiocephalyegroups

> >Subject: Re: Re: 2nd band debate

> >Date: Fri, 15 Dec 2000 11:46:54 -0700

> >

> > > Sherrie and nah are really sweet, but I'm not sure how

much I

> > > trust them. There's been a few other quirky things I've

noticed and

> > > from the months I've belonged to this site and read everyone

elses

> > > posts - something just seems 'off' there.

> > >

> >:

> >

> >If this is so, then I would email or call the Cranial Tech. head

office

> >in Phoenix. Even if they don't say much to you about it, I'm sure

that

> >they would check into it. After all, it is their business, and if

some

> >of their clinics start " scamming " people, it's a pretty hefty

price to

> >pay with their reputation!

> >

> >Kendra

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

In a message dated 12/15/2000 1:47:44 PM Central Standard Time, aschton@... writes:

I didn't mean to sound like I thought I was being scammed by them

, I have to say I agree with you. My son is in his third helmet made locally. Since all of this started, I have always felt there was more to it than just fixing heads. This IS a business and they are trying to make as much money as possible. I sure would be. The company we use must be doing so well that they opened an office just 20minutes from us. Last time we saw the neuro he said he was DX plagio 3-4x per week. These ortho places have to be making big $$. I was even considering buying stock in CT if possible! Belinda(Indiana)

[Guest guest]

Hi Everyone,

I would like to clear up some confusion about the need for second

bands.

An experienced CTI clinician can look at the degree of head

deformation and (considering the history of the deformation and the

age of the infant) estimate what will be accomplished with one DOC

Band. The clinicians are instructed to discuss this with parents, to

help them better understand the treatment process. However, nobody

can predict the growth rate of an individual child - each human body

is different; some babies grow fast, others slower.

The more difficult brachycephalic heads may need two bands to achieve

maximum correction. What our clinicians cannot predict is at what

point the family and physician will be satisfied. We have physicians

who hold a " close enough " standard, while others need " as near to

normal as possible " outcome.

The CTI clinicians' responsibility is to let parents and the

physician know what the band can and cannot do in each patient's

case. The parents can then make decisions based on that information.

In our Atlanta clinic, 19% of the infants have gone into second bands.

Carol kson

President

Cranial Technologies, Inc.

erickson@...

866-DOC-BAND

[Guest guest]

To everyone who has responded about your experiences in determining whether

to get a 2nd band, thank you! I feel like I opened a can of worms, which

was not my intention. We were just confused about what to do when the CT

clinicians said one thing and our neurosurgeon said another.

Carol, thank you for responding from the official standpoint of how CT

determines the need for a 2nd band. As a parent, it is tough to know what's

best for our little ones sometimes.

lee

Atlanta, GA

_________________________________________________________________

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[Guest guest]

Belinda,

Hummmmmmm, now that's an idea ! I wonder - is CT stock open to the

public? Just think - we could all get wealthy !! he he

3rd helmet ? OMG ! How have you been handling it ? For some reason

I thought you guys were finished already ?

> In a message dated 12/15/2000 1:47:44 PM Central Standard Time,

> aschton@y... writes:

>

>

> >

>

> , I have to say I agree with you. My son is in his third

helmet

> made locally. Since all of this started, I have always felt there

was more to

> it than just fixing heads. This IS a business and they are trying

to make as

> much money as possible. I sure would be. The company we use must

be doing so

> well that they opened an office just 20minutes from us. Last time

we saw the

> neuro he said he was DX plagio 3-4x per week. These ortho places

have to be

> making big $$. I was even considering buying stock in CT if

possible!

> Belinda(Indiana)

[Guest guest]

Hummmmmmm, now that's an idea ! I wonder - is CT stock open to the

public? Just think - we could all get wealthy !! he he

We had this discussion in the past. CT has no public holdings (

Kendra

[Guest guest]

In a message dated 12/15/2000 11:28:19 PM Central Standard Time, aschton@... writes:

3rd helmet ? OMG ! How have you been handling it ?

, After all this time we are just so used to Vince in his helmet. We really think he looks unusual without it! In a way I have been glad he still has it. Now that he is walking, it has saved his head from bruises many times. Belinda(Indiana) PS. The stock is not available. At least, not yet!

[Guest guest]

Belinda - I had to get another helmet for replace the "bad" third one? Right? How is it going? This helmet doing good?

Tammy & 12/8/99

[Guest guest]

Sounds like you guys are hanging in there well, Belinda

I totally understand about the bruised head - I wish we could afford

a band for Kailey's daredevil twin - That boys head is covered in

Bruises !!!

Dh is worried about when Kailey's band comes off - she has taken to

head banging and throwing fits since she got the band. She use to be

such a sweet natured little thing............

> In a message dated 12/15/2000 11:28:19 PM Central Standard Time,

> aschton@y... writes:

>

>

> > 3rd helmet ? OMG ! How have you been handling it ?

>

> , After all this time we are just so used to Vince in

his helmet.

> We really think he looks unusual without it! In a way I have been

glad he

> still has it. Now that he is walking, it has saved his head from

bruises many

> times. Belinda(Indiana) PS. The stock is not available.

At least,

> not yet!

[Guest guest]

In a message dated 12/16/2000 10:22:50 PM Central Standard Time, bailykuhn@... writes:

Belinda - I had to get another helmet for replace the "bad" third one?

Right? How is it going? This helmet doing good?

Tammy, It has been working pretty good. I still have him wearing it all the time. When we saw neuro last he suggested we wean him and only use it nights. I figure if he can still get more improvement I'll keep it on until we are done. Belinda(Indiana)