NEW MEMBER

[Guest guest]

Crystal,

I have one crucial piece of advice for you - TRUST YOUR MOMMY

INSTINCTS.

Becky

crystal514@... wrote:

>

> hi,

> i am new to the group and i am having some problems that maybe you

> guys can help me with. last month my pediatrician diagnosed my son

> with torticollis and plagiocephaly...he sent us to a surgeon who then

> said that he didnt think he had torticollis so he sent us for a

> physical therapy evaluation, the pt said he definately had

> torticollis and plagiocephaly and that he would really benefit from

> the doc band. there were other concerns with my son that my

> pediatrician was not taking into consideration so we changed

> pediatricians and went to a new one who told us today that he doesnt

> think he has tort and that his head will round out on its own. he

> actually told us that the physical therapist was crazy and we need do

> nothing from here on out. my motherly instincts tell me something is

> wrong, that he does have the torticollis and that his head wont round

> out on its own. he has a severe deformity with his ear that to me in

> no way can just fix itself. we have had so many conflicting opinions,

> we dont know where to go or what do now. i feel if we just leave it

> alone then this will be a mistake and my son is gonna suffer in the

> long run. i am lost as to what to do next. any help would be greatly

> appreciated.

>

> crystal & gabriel

>

>

>

[Guest guest]

I agree with trusting your mommy instincts. Our son, Jaxen (6 months old)

was just cast for his DOC Band yesterday. I sent out an email to my

relatives letting them know what was happening and my Aunt wrote back to

say that my Uncle (in his mid-40's) has a very flat spot on the back of

his head that he is very self-conscious about - his main

concern about losing hair is that the flat spot will be very

noticeable. She doesn't know if it was caused by forceps delivery

or sleeping on his back. But she is glad we're doing whatever we

can for Jaxen since Medical stuff is so much better now!!!

(Jaxen's momma)

At 10:51 AM 10/20/00 -0500, you wrote:

Crystal,

I have one crucial piece of advice for you - TRUST YOUR MOMMY

INSTINCTS.

Becky

crystal514@... wrote:

>

> hi,

> i am new to the group and i am having some problems that maybe

you

> guys can help me with. last month my pediatrician diagnosed my

son

> with torticollis and plagiocephaly...he sent us to a surgeon who

then

> said that he didnt think he had torticollis so he sent us for a

> physical therapy evaluation, the pt said he definately had

> torticollis and plagiocephaly and that he would really benefit

from

> the doc band. there were other concerns with my son that my

> pediatrician was not taking into consideration so we changed

> pediatricians and went to a new one who told us today that he

doesnt

> think he has tort and that his head will round out on its own.

he

> actually told us that the physical therapist was crazy and we need

do

> nothing from here on out. my motherly instincts tell me something

is

> wrong, that he does have the torticollis and that his head wont

round

> out on its own. he has a severe deformity with his ear that to me

in

> no way can just fix itself. we have had so many conflicting

opinions,

> we dont know where to go or what do now. i feel if we just leave

it

> alone then this will be a mistake and my son is gonna suffer in

the

> long run. i am lost as to what to do next. any help would be

greatly

> appreciated.

>

> crystal & gabriel

>

>

>

[Guest guest]

hi, crystal,

how old is your son?

--- crystal514@... wrote:

> hi,

> i am new to the group and i am having some problems

> that maybe you

> guys can help me with. last month my pediatrician

> diagnosed my son

> with torticollis and plagiocephaly...he sent us to a

> surgeon who then

> said that he didnt think he had torticollis so he

> sent us for a

> physical therapy evaluation, the pt said he

> definately had

> torticollis and plagiocephaly and that he would

> really benefit from

> the doc band. there were other concerns with my son

> that my

> pediatrician was not taking into consideration so we

> changed

> pediatricians and went to a new one who told us

> today that he doesnt

> think he has tort and that his head will round out

> on its own. he

> actually told us that the physical therapist was

> crazy and we need do

> nothing from here on out. my motherly instincts tell

> me something is

> wrong, that he does have the torticollis and that

> his head wont round

> out on its own. he has a severe deformity with his

> ear that to me in

> no way can just fix itself. we have had so many

> conflicting opinions,

> we dont know where to go or what do now. i feel if

> we just leave it

> alone then this will be a mistake and my son is

> gonna suffer in the

> long run. i am lost as to what to do next. any help

> would be greatly

> appreciated.

>

>

> crystal & gabriel

>

>

__________________________________________________

[Guest guest]

Dear Crystal & :

I think everyone on this list has a similar story. Since

plagiocephaly has not been such a problem until the back-to-sleep

campaign, many doctors are not educated about the subject. You were

lucky that your 1st ped. diagnosed it! As far as the head rounding

out on its own, one can't say for sure if your baby's will or not.

(Just to let you know, I am not a doctor and am going on personal

experience so these are just my own opinions!) I have 16 month old

twins who were diagnosed with plagiocepahly at four months by my

ped. She thought they would round out on their own, but recommended

cranio-sacral message to help it along. We did that and my son's

head corrected. My daughter's head was still severely flat at 12

months! My ped. offered to prescribe the DOC if that was what we

wanted - which we did. She started at 14 months and has shown

significant improvement. I am very glad we did it, and the cranio-

sacral. Anyhow, I guess what I'm saying is that it is a hard

decision to make - whether to do anything or not. We are definitely

glad we did, but I'm sure you will find other's who will say they

were glad they didn't! If you would like to talk to me about it,

feel free to email me at bsbguy@... and we can discuss it in

more detail.

GOOD LUCK!!!!!!

Amy Hoovler

> hi,

> i am new to the group and i am having some problems that maybe you

> guys can help me with. last month my pediatrician diagnosed my son

> with torticollis and plagiocephaly...he sent us to a surgeon who

then

> said that he didnt think he had torticollis so he sent us for a

> physical therapy evaluation, the pt said he definately had

> torticollis and plagiocephaly and that he would really benefit from

> the doc band. there were other concerns with my son that my

> pediatrician was not taking into consideration so we changed

> pediatricians and went to a new one who told us today that he

doesnt

> think he has tort and that his head will round out on its own. he

> actually told us that the physical therapist was crazy and we need

do

> nothing from here on out. my motherly instincts tell me something

is

> wrong, that he does have the torticollis and that his head wont

round

> out on its own. he has a severe deformity with his ear that to me

in

> no way can just fix itself. we have had so many conflicting

opinions,

> we dont know where to go or what do now. i feel if we just leave it

> alone then this will be a mistake and my son is gonna suffer in the

> long run. i am lost as to what to do next. any help would be

greatly

> appreciated.

>

>

> crystal & gabriel

[Guest guest]

Hi . Welcome to the group. We are in Cincinnati, and we travel to

the Dallas CT office (my family lives there). Have you been to the

Cranial Technologies web site yet? www.cranialtech.com

Their web site explains a lot, and so does www.plagiocephaly.org

The DOC band is worn 23 hours a day, with 1 hour off for cleaning and

bath time. is in his second band, and he has been in

treatment since August 15th. We have seen tremendous improvement. He had

just a bit of Torticollis, and the exercises helped very quickly. He is

now 8 months old, and I am hoping will be out of the band by the end of

January or so.

Where in Ohio are you? I know that CT will be opening an office in

Cleveland very soon.

Good luck to you!

Amy &

Ohio

" Hi, my name is and my son, (6-28-00) was diagnosed with

torticollis at four months. I am considering a band to correct his head

shape and corresponding facial asymmetry. Any advice you can share would

be

helpful. I am located in Ohio, and I know that Cranial Technologies does

not have an office here, I would have to travel to Illinois.

Do the children wear the bands all the time?

/ (6-28-00) "

[Guest guest]

We are in Cleveland. I have visited the CT web site. How often do you have to

visit the CT office?

/ (6-28-00)

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

From: Amy Sims [sMTP:amy@...]

Sent: Thursday, November 30, 2000 12:21 PM

Plagiocephalyegroups

Subject: RE: New Member

Hi . Welcome to the group. We are in Cincinnati, and we travel to

the Dallas CT office (my family lives there). Have you been to the

Cranial Technologies web site yet? www.cranialtech.com

Their web site explains a lot, and so does www.plagiocephaly.org

The DOC band is worn 23 hours a day, with 1 hour off for cleaning and

bath time. is in his second band, and he has been in

treatment since August 15th. We have seen tremendous improvement. He had

just a bit of Torticollis, and the exercises helped very quickly. He is

now 8 months old, and I am hoping will be out of the band by the end of

January or so.

Where in Ohio are you? I know that CT will be opening an office in

Cleveland very soon.

Good luck to you!

Amy &

Ohio

" Hi, my name is and my son, (6-28-00) was diagnosed with

torticollis at four months. I am considering a band to correct his head

shape and corresponding facial asymmetry. Any advice you can share would

be

helpful. I am located in Ohio, and I know that Cranial Technologies does

not have an office here, I would have to travel to Illinois.

Do the children wear the bands all the time?

/ (6-28-00) "

[Guest guest]

:

I just read your post that you are in Cleveland and looking at the DOC band.

We live in Wickliffe (eastern suburb) and traveled to Chicago for the band

this summer. completed treatment in 4 1/2 months and we are VERY

pleased with the entire experience (even the travel was OK).

I suggest you contact CT ( Kay and Dina at the Chicago office are great)

to see when the Beachwood office is scheduled to open. I thought it was

late this year.

Basically, started treatment at 7 1/2 months of age with tort (that

was improving through PT) and a mean case of plagio. His ears were

misaligned and he had slight bossing of his forehead. He was the classic

parollogram shape that CT shows on their web site. His treatment was

uneventful, with only minor red spots that cleared up quickly. Overall, he

has about 95% correction and we are very happy with our decision. We have

posted some pictures of under the Files section of this group's web

site.

This group is a great resource to answer many questions. I would be very

happy to share our experience with you.

Sue Luck

mom to , DOC band graduate

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

From: Young <jyoung@...>

<Plagiocephalyegroups>

Sent: Thursday, November 30, 2000 10:14 AM

Subject: New Member

> Hi, my name is and my son, (6-28-00) was diagnosed with

> torticollis at four months. I am considering a band to correct his head

> shape and corresponding facial asymmetry. Any advice you can share would

be

> helpful. I am located in Ohio, and I know that Cranial Technologies does

> not have an office here, I would have to travel to Illinois.

>

> Do the children wear the bands all the time?

>

> / (6-28-00)

>

> -----Original Message-----

> From: marcisch@... [sMTP:marcisch@...]

> Sent: Thursday, November 30, 2000 9:48 AM

> Plagiocephalyegroups

> Subject: Re: Re: Facial asymmetry (to Becky)

>

> Same thing for us. The back of 's head looks really good, but we

still

> have some facial assymetry. It has gotten a little better. Our orthotist

> has

> been pleased with the progress and thinks we will continue to see

> improvement.

>

> Marci

>

>

>

[Guest guest]

Why did you not select the Indiana location since it is closer to Ohio? I have

emailed CT to ask about the Cleveland office.

Thanks again for the information.

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

From: and Luck [sMTP:msluck@...]

Sent: Thursday, November 30, 2000 3:53 PM

Plagiocephalyegroups

Subject: Re: New Member

:

I just read your post that you are in Cleveland and looking at the DOC band.

We live in Wickliffe (eastern suburb) and traveled to Chicago for the band

this summer. completed treatment in 4 1/2 months and we are VERY

pleased with the entire experience (even the travel was OK).

I suggest you contact CT ( Kay and Dina at the Chicago office are great)

to see when the Beachwood office is scheduled to open. I thought it was

late this year.

Basically, started treatment at 7 1/2 months of age with tort (that

was improving through PT) and a mean case of plagio. His ears were

misaligned and he had slight bossing of his forehead. He was the classic

parollogram shape that CT shows on their web site. His treatment was

uneventful, with only minor red spots that cleared up quickly. Overall, he

has about 95% correction and we are very happy with our decision. We have

posted some pictures of under the Files section of this group's web

site.

This group is a great resource to answer many questions. I would be very

happy to share our experience with you.

Sue Luck

mom to , DOC band graduate

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

From: Young <jyoung@...>

<Plagiocephalyegroups>

Sent: Thursday, November 30, 2000 10:14 AM

Subject: New Member

> Hi, my name is and my son, (6-28-00) was diagnosed with

> torticollis at four months. I am considering a band to correct his head

> shape and corresponding facial asymmetry. Any advice you can share would

be

> helpful. I am located in Ohio, and I know that Cranial Technologies does

> not have an office here, I would have to travel to Illinois.

>

> Do the children wear the bands all the time?

>

> / (6-28-00)

>

> -----Original Message-----

> From: marcisch@... [sMTP:marcisch@...]

> Sent: Thursday, November 30, 2000 9:48 AM

> Plagiocephalyegroups

> Subject: Re: Re: Facial asymmetry (to Becky)

>

> Same thing for us. The back of 's head looks really good, but we

still

> have some facial assymetry. It has gotten a little better. Our orthotist

> has

> been pleased with the progress and thinks we will continue to see

> improvement.

>

> Marci

>

>

>

[Guest guest]

was very young (almost 5 months old) when he started his

first band, so we were going every week. When he got his second band, he

started every other week (7 months old).

Amy

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

From: Young [mailto:jyoung@...]

Sent: Thursday, November 30, 2000 1:30 PM

'Plagiocephalyegroups'

Subject: RE: New Member

We are in Cleveland. I have visited the CT web site. How often do you

have to visit the CT office?

/ (6-28-00)

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

From: Amy Sims [sMTP:amy@...]

Sent: Thursday, November 30, 2000 12:21 PM

Plagiocephalyegroups

Subject: RE: New Member

Hi . Welcome to the group. We are in Cincinnati, and we travel to

the Dallas CT office (my family lives there). Have you been to the

Cranial Technologies web site yet? www.cranialtech.com

Their web site explains a lot, and so does www.plagiocephaly.org

The DOC band is worn 23 hours a day, with 1 hour off for cleaning and

bath time. is in his second band, and he has been in

treatment since August 15th. We have seen tremendous improvement. He had

just a bit of Torticollis, and the exercises helped very quickly. He is

now 8 months old, and I am hoping will be out of the band by the end of

January or so.

Where in Ohio are you? I know that CT will be opening an office in

Cleveland very soon.

Good luck to you!

Amy &

Ohio

" Hi, my name is and my son, (6-28-00) was diagnosed with

torticollis at four months. I am considering a band to correct his head

shape and corresponding facial asymmetry. Any advice you can share would

be

helpful. I am located in Ohio, and I know that Cranial Technologies does

not have an office here, I would have to travel to Illinois.

Do the children wear the bands all the time?

/ (6-28-00) "

[Guest guest]

Hi :

Welcome to the group!

I am also in Ohio -- my son Quinn recently graduated from the DOC band (about 5-6 weeks ago I think..... you know how time gets away from you sometimes...)

I live in Cincinnati and traveled to the Chicago Cranial Technologies Office. Quinn had a different head shape, more narrow and elongated (in utero, breech baby), called scaphocephalic, and a typical helmet would not have worked for him. We got improvement, a slight "slope" in the back (the back of his head stuck straight out over an inch past his neck at its worst), and definitely filling out the forehead, etc. I'd do treatment again in a heartbeat. At the time we started (June, by the time we struggled with the insurance), I did not know of an Indiana site, I'm not sure when it opened. I know that there is a Cleveland site that they are scheduled to open soon (if it hasn't already been opened). At the time our only option for our situation was the DOC band.

Because Quinn was a little over 6 months old when we finally got the band (he was cast on his 6 month birthday), we only had to travel every other week. Which we did by car. Appointments were about 20-30 minutes long. Kay and Dina were wonderful. We received our before and after casts just two weeks ago, and I still can't believe the difference.

If you are wondering about whether to go ahead with treatment or not, sometimes photos are helpful (as well as helpful for documentation for insurance companies, if need be). Especially if you are doing PT (take a video of the session, extra exercises you might do without a therapist, and log/date the number of sessions you do with a therapist as well as on your own) Unless you already know in writing that your insurance will cover it, the more documentation you have of therapies you are doing now, the better.

You'd be surprised at how fast the time goes... we were in our band for 18 weeks. But it FLEW by..... (but then again, this whole year just FLEW by!!!

Good Luck.

H.

Mom to Quinn (11-19-99), DOC band graduate

-----Original Message-----From: Young [mailto:jyoung@...]Sent: Thursday, November 30, 2000 10:15 AM'Plagiocephalyegroups'Subject: New MemberHi, my name is and my son, (6-28-00) was diagnosed with torticollis at four months. I am considering a band to correct his head shape and corresponding facial asymmetry. Any advice you can share would be helpful. I am located in Ohio, and I know that Cranial Technologies does not have an office here, I would have to travel to Illinois.Do the children wear the bands all the time?/ (6-28-00)-----Original Message-----From: marcisch@... [sMTP:marcisch@...]Sent: Thursday, November 30, 2000 9:48 AM PlagiocephalyegroupsSubject: Re: Re: Facial asymmetry (to Becky)Same thing for us. The back of 's head looks really good, but we still have some facial assymetry. It has gotten a little better. Our orthotist hasbeen pleased with the progress and thinks we will continue to see improvement.Marci

[Guest guest]

Kali...

My daughter Aimee has the same headshape that Quinn had....did you all get the band that used rubber bands? Aimee was given one with a velcro strap because of facial assymetry..which I hadn't even really noticed till they pointed it out.....Sorry about all the questions.......I see its rather rare to hear from someone whos' childs head shape is the same as aimees......Its great encouragment knowing that this can be fixed!!!! Oh and Aimee was a breech c-section baby as well!

Domi and Aimee (Jan.5, 2000)

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

From: Kali

Plagiocephalyegroups

Sent: Thursday, November 30, 2000 10:15 PM

Subject: RE: New Member

Hi :

Welcome to the group!

I am also in Ohio -- my son Quinn recently graduated from the DOC band (about 5-6 weeks ago I think..... you know how time gets away from you sometimes...)

I live in Cincinnati and traveled to the Chicago Cranial Technologies Office. Quinn had a different head shape, more narrow and elongated (in utero, breech baby), called scaphocephalic, and a typical helmet would not have worked for him. We got improvement, a slight "slope" in the back (the back of his head stuck straight out over an inch past his neck at its worst), and definitely filling out the forehead, etc. I'd do treatment again in a heartbeat. At the time we started (June, by the time we struggled with the insurance), I did not know of an Indiana site, I'm not sure when it opened. I know that there is a Cleveland site that they are scheduled to open soon (if it hasn't already been opened). At the time our only option for our situation was the DOC band.

Because Quinn was a little over 6 months old when we finally got the band (he was cast on his 6 month birthday), we only had to travel every other week. Which we did by car. Appointments were about 20-30 minutes long. Kay and Dina were wonderful. We received our before and after casts just two weeks ago, and I still can't believe the difference.

If you are wondering about whether to go ahead with treatment or not, sometimes photos are helpful (as well as helpful for documentation for insurance companies, if need be). Especially if you are doing PT (take a video of the session, extra exercises you might do without a therapist, and log/date the number of sessions you do with a therapist as well as on your own) Unless you already know in writing that your insurance will cover it, the more documentation you have of therapies you are doing now, the better.

You'd be surprised at how fast the time goes... we were in our band for 18 weeks. But it FLEW by..... (but then again, this whole year just FLEW by!!!

Good Luck.

H.

Mom to Quinn (11-19-99), DOC band graduate

-----Original Message-----From: Young [mailto:jyoung@...]Sent: Thursday, November 30, 2000 10:15 AM'Plagiocephalyegroups'Subject: New MemberHi, my name is and my son, (6-28-00) was diagnosed with torticollis at four months. I am considering a band to correct his head shape and corresponding facial asymmetry. Any advice you can share would be helpful. I am located in Ohio, and I know that Cranial Technologies does not have an office here, I would have to travel to Illinois.Do the children wear the bands all the time?/ (6-28-00)-----Original Message-----From: marcisch@... [sMTP:marcisch@...]Sent: Thursday, November 30, 2000 9:48 AM PlagiocephalyegroupsSubject: Re: Re: Facial asymmetry (to Becky)Same thing for us. The back of 's head looks really good, but we still have some facial assymetry. It has gotten a little better. Our orthotist hasbeen pleased with the progress and thinks we will continue to see improvement.Marci

[Guest guest]

:

I'm not sure when the Indiana office opened, but when we were looking at CT

(late April), Chicago was the closest. It is 6 hours by car, but we chose

to fly all but the first trip. Both Southwest and Continental had great

rates to Chicago from Cleveland Hopkins and we went up and back in a day.

Can I ask who you have seen locally? We started with the Cleveland Clinic's

helmet, but chose the DOC band. The Star band was not available yet, and I

haven't heard if anyone here is offering it yet. If you chose to travel,

please let the group know as there are many tips we can offer.

Keep in touch,

Sue Luck, mom to , DOC band graduate

Cleveland, OH

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

From: Young <jyoung@...>

<Plagiocephalyegroups>

Sent: Thursday, November 30, 2000 4:39 PM

Subject: RE: New Member

> Why did you not select the Indiana location since it is closer to Ohio? I

have emailed CT to ask about the Cleveland office.

>

> Thanks again for the information.

>

>

>

> -----Original Message-----

> From: and Luck [sMTP:msluck@...]

> Sent: Thursday, November 30, 2000 3:53 PM

> Plagiocephalyegroups

> Subject: Re: New Member

>

> :

> I just read your post that you are in Cleveland and looking at the DOC

band.

> We live in Wickliffe (eastern suburb) and traveled to Chicago for the band

> this summer. completed treatment in 4 1/2 months and we are VERY

> pleased with the entire experience (even the travel was OK).

>

> I suggest you contact CT ( Kay and Dina at the Chicago office are

great)

> to see when the Beachwood office is scheduled to open. I thought it was

> late this year.

>

> Basically, started treatment at 7 1/2 months of age with tort

(that

> was improving through PT) and a mean case of plagio. His ears were

> misaligned and he had slight bossing of his forehead. He was the classic

> parollogram shape that CT shows on their web site. His treatment was

> uneventful, with only minor red spots that cleared up quickly. Overall,

he

> has about 95% correction and we are very happy with our decision. We have

> posted some pictures of under the Files section of this group's

web

> site.

>

> This group is a great resource to answer many questions. I would be very

> happy to share our experience with you.

> Sue Luck

> mom to , DOC band graduate

>

>

> ----- Original Message -----

> From: Young <jyoung@...>

> <Plagiocephalyegroups>

> Sent: Thursday, November 30, 2000 10:14 AM

> Subject: New Member

>

>

> > Hi, my name is and my son, (6-28-00) was diagnosed with

> > torticollis at four months. I am considering a band to correct his head

> > shape and corresponding facial asymmetry. Any advice you can share would

> be

> > helpful. I am located in Ohio, and I know that Cranial Technologies does

> > not have an office here, I would have to travel to Illinois.

> >

> > Do the children wear the bands all the time?

> >

> > / (6-28-00)

> >

> > -----Original Message-----

> > From: marcisch@... [sMTP:marcisch@...]

> > Sent: Thursday, November 30, 2000 9:48 AM

> > Plagiocephalyegroups

> > Subject: Re: Re: Facial asymmetry (to Becky)

> >

> > Same thing for us. The back of 's head looks really good, but we

> still

> > have some facial assymetry. It has gotten a little better. Our orthotist

> > has

> > been pleased with the progress and thinks we will continue to see

> > improvement.

> >

> > Marci

> >

> >

> >

[Guest guest]

Thanks for the info. So far we have only seen our PT. I am seeing my

pediatrician soon and will ask for recommendations. I also have spoken with

another group member from Cleveland and she gave me additional dr. names.

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

From: and Luck [sMTP:msluck@...]

Sent: Sunday, December 03, 2000 2:25 PM

Plagiocephalyegroups

Subject: Re: New Member

:

I'm not sure when the Indiana office opened, but when we were looking at CT

(late April), Chicago was the closest. It is 6 hours by car, but we chose

to fly all but the first trip. Both Southwest and Continental had great

rates to Chicago from Cleveland Hopkins and we went up and back in a day.

Can I ask who you have seen locally? We started with the Cleveland

Clinic's

helmet, but chose the DOC band. The Star band was not available yet, and I

haven't heard if anyone here is offering it yet. If you chose to travel,

please let the group know as there are many tips we can offer.

Keep in touch,

Sue Luck, mom to , DOC band graduate

Cleveland, OH

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

From: Young <jyoung@...>

<Plagiocephalyegroups>

Sent: Thursday, November 30, 2000 4:39 PM

Subject: RE: New Member

> Why did you not select the Indiana location since it is closer to Ohio? I

have emailed CT to ask about the Cleveland office.

>

> Thanks again for the information.

>

>

>

> -----Original Message-----

> From: and Luck [sMTP:msluck@...]

> Sent: Thursday, November 30, 2000 3:53 PM

> Plagiocephalyegroups

> Subject: Re: New Member

>

> :

> I just read your post that you are in Cleveland and looking at the DOC

band.

> We live in Wickliffe (eastern suburb) and traveled to Chicago for the

band

> this summer. completed treatment in 4 1/2 months and we are

VERY

> pleased with the entire experience (even the travel was OK).

>

> I suggest you contact CT ( Kay and Dina at the Chicago office are

great)

> to see when the Beachwood office is scheduled to open. I thought it was

> late this year.

>

> Basically, started treatment at 7 1/2 months of age with tort

(that

> was improving through PT) and a mean case of plagio. His ears were

> misaligned and he had slight bossing of his forehead. He was the classic

> parollogram shape that CT shows on their web site. His treatment was

> uneventful, with only minor red spots that cleared up quickly. Overall,

he

> has about 95% correction and we are very happy with our decision. We

have

> posted some pictures of under the Files section of this group's

web

> site.

>

> This group is a great resource to answer many questions. I would be

very

> happy to share our experience with you.

> Sue Luck

> mom to , DOC band graduate

>

>

> ----- Original Message -----

> From: Young <jyoung@...>

> <Plagiocephalyegroups>

> Sent: Thursday, November 30, 2000 10:14 AM

> Subject: New Member

>

>

> > Hi, my name is and my son, (6-28-00) was diagnosed with

> > torticollis at four months. I am considering a band to correct his head

> > shape and corresponding facial asymmetry. Any advice you can share

would

> be

> > helpful. I am located in Ohio, and I know that Cranial Technologies

does

> > not have an office here, I would have to travel to Illinois.

> >

> > Do the children wear the bands all the time?

> >

> > / (6-28-00)

> >

> > -----Original Message-----

> > From: marcisch@... [sMTP:marcisch@...]

> > Sent: Thursday, November 30, 2000 9:48 AM

> > Plagiocephalyegroups

> > Subject: Re: Re: Facial asymmetry (to Becky)

> >

> > Same thing for us. The back of 's head looks really good, but we

> still

> > have some facial assymetry. It has gotten a little better. Our

orthotist

> > has

> > been pleased with the progress and thinks we will continue to see

> > improvement.

> >

> > Marci

> >

> >

> >

[Guest guest]

Hi ,

There are several folks on this board from Canada, so maybe you'll hear

from them soon.

As for repositioning, we tried it with . Not only did it NOT work

for us, she actually ended up with ANOTHER flat spot on the other side.

I know it works for some people, but it sure didn't work for ! I

would think if you've been repositioning him for two months without much

improvement, there won't be much in the future.

We didn't have any trouble seeing a specialist (once we convinced our

ped to give us a referral). We started the whole process when was

about 3 months old. I brought up our concerns at her 2-month checkup,

but her ped said " let's wait and see " - we waited a month, and then

after her 3-month checkup when we got the same response from her ped, we

decided not to wait any longer. got her band when she was a

little over 5 months old. It took about 2 to 2 1/2 months to get

through all the diagnostic stuff - they were afraid she had

craniosynostosis (where the sutures are prematurely closed), so we had

to see a surgeon and have a CT scan done, which contributed to the

length of time it took to get her in a band.

Time IS precious, but there are a lot of folks on this board whose

babies didn't start treatment until they were close to a year old - so

you still have time. It's better to start earlier due to the rapid

growth during the first year, but it's possible to still get a lot of

correction when starting treamtent late.

You're SOOO lucky that your doctor was familiar with plagio. The

majority of people here have had to fight for both the diagnosis and

treatment. 's ped STILL doesn't think she needs a band!

Good luck in your search for answers and treatment. I'm sure you'll be

hearing from the Canadians on this board soon!

Becky & (5/4/00, banded since 10/13/00)

Plano, TX

katherinemac@... wrote:

>

> We live in a small town in Northwestern Ontario, Canada. I've just

> returned from the doctor who has presented me with the possibility

> that my son has plagiocephaly. I've noticed his deformity since

> birth, suggesting that it was intrauterine, and luckily my family

> doctor had just returned from a symposium in Calgary, Alberta,

> otherwise it may have been overlooked. After spending my time

> following the appointment searching the web, I've come to the

> conclusion that time is of the essence - my son is 4 1/2 months old.

> My doctor has recommended repositioning (something we had already been

> trying due to the early perceived weakness of his one side) but it

> seems as though this will not be enough. It has been 2 months already

> with little progress. I guess my questions are as follows: Is it too

> late to try repositioning and have it be effective? How hard is it to

> see a specialist? What is the average wait time between diagnosis and

> treatment? I am also looking for any Canadians who might have some

> information regarding specialists in Winnipeg, Manitoba or Thunder

> Bay, Ontario or even outside of these areas. It just feels like time

> is so precious and I want to be as informed as possible. I look

> forward to anyone's reply. Thank you,

>

> and Don MacIver

>

>

>

[Guest guest]

Hi ! Welcome to the group!

I'm in Calgary, and my daughter, Hanna wore a DOC Band for 5 months

after being diagnosed with severe plagio. Getting help was fairly

easy for us, as our doctor was open to my concerns, and we have a treatment

center right here in Calgary. Unfortunately, there are only 2 facilities

in Canada who work with the DOC Band. One in Calgary, one in Edmonton.

People travel here from as far as Toronto (that I know of) to get treatment.

That's the bad news.

The good news is that there is now another band available, made by Orthomerica.

It's virtually the same as the DOC Band, but more available. You

will still need a prescription for the band (good thing you have a doctor

who knows about this condition!!), and you will also have to find an orthotist

in your area who is willing to work with Orthomerica. Check around,

as you may find one who is already working with them. Actually, go

to thier website. They can probably help you to find someone in your

area.

I know there are other helmet programs in Toronto and Ottawa, but i

don't know too much about them. I'm sure your doctor can help you

find out.

Hope this helps you out a bit. If you have any more questions,

please give me a shout!

Kendra

Group Moderator

[Guest guest]

hello

most children accept the helmet quite well and do not have a problem

sleeping through the night with it .normally a child will remain in the

helmet for 4 months.

[Guest guest]

:

My daughter got her helmet when she was 9 months old. She is a VERY stubborn,

opinionated and sensitive baby, however, she could not have cared less when

we put the helmet on her! We were SURE she would cry, fuss and try to take it

off - she absolutely HATES hats. This was not the case. From day one, hour

one, minute one she could not care less about it. We put it on and she went

about her business like nothing was different. Her sleeping patterns were not

disrupted in any way and we were also very worried about that! I'm sure this

is not necessarily the case with everyone, but it has been much less of an

ordeal then we anticipated. We have seen results already and she has been in

it for about 7 weeks.

I hope this info helps - good luck and keep us posted!!

Marci

Mom to (11 months today!!!)

[Guest guest]

Hi ,

My daughter received her helmet when she was 6 months old and she has

had very few problems wearing it. She didn't seem to notice it at

all from the very beginning but when her head gets really sweaty, she

tends to get cranky. Taryn has never been a very good sleeper so I

don't know if it has effected her or not! We started seeing

improvement within the first 6 weeks or so, but every child is

different. Good luck with 's helmet therapy!

Andreya and Taryn

> Hi, My name is . I have a son, he was diagnosed

with

> plagiocephaly and torticollis when he was 2 months old. We have

been

> going to therapy since he was about 4 months old and he is doing

> really good. He is now 6 months old and should be getting the

helmet

> any day now. I hope it works and he doesn't have any real problems

> with it. I have heard that it makes some babies really cranky when

> they first get it and they have a hard time sleeping with it on.

Has

> anyone here had that problem? I was also wondering if anyone here

is

> from Philly, PA.?

> Does anyone know how long it takes for the helmet to work? I really

> hope has good results after he gets his helmet.

>

>

> (6/5/00)

[Guest guest]

Hi and !!!!

Welcome to the group. My name is Kaycee and I am the mother of

Maggie. We are in Albany NY. We travel to the Paramus NJ office.

Maggie was older when she got her band - 1 week before her 1st

birthday. She pulled at it for a little while but then never gave it

a second thought. She is not cranky and sometimes even cries when we

take it off. Let him hold it in his hands and explore it so it

becomes " his " . Maggie knows it belongs only to her and doesn't mind

it at all.

Good luck.

Kaycee

> Hi, My name is . I have a son, he was diagnosed

with

> plagiocephaly and torticollis when he was 2 months old. We have

been

> going to therapy since he was about 4 months old and he is doing

> really good. He is now 6 months old and should be getting the

helmet

> any day now. I hope it works and he doesn't have any real problems

> with it. I have heard that it makes some babies really cranky when

> they first get it and they have a hard time sleeping with it on.

Has

> anyone here had that problem? I was also wondering if anyone here

is

> from Philly, PA.?

> Does anyone know how long it takes for the helmet to work? I really

> hope has good results after he gets his helmet.

>

>

> (6/5/00)

[Guest guest]

Hi Laurie - I live in Portland, Oregon. You can buy Noris non-homogenized

organic milk at Zupans and Natures in the Portland area. Noris is located in

Oregon and I'm thinking it's somewhere by Crabtree or Sweet Home. I know

their milk is for sale in Salem, Albany and Corvallis area as well. You

could call Noris directly and find out if they deliver somewhere close to

where you are located at.

[Guest guest]

Welcome Laurie!

I'm sure that this group with provide you with an infinite amount of

support! I enjoy reading all of the questions and answers that are

posted. (Of course I like to respond too!).

B. ;-)

[Guest guest]

Hi

Thanks! I probably should have been more specific though - I live

northwest of Seattle. I think I'll call Noris anyway, and see if

they know of anyone close by. The NW dairy folk must know of each

other. So, thanks for the lead :-)

Laurie L.

[Guest guest]

You may find Noris milk in the Seattle area as well. Strauss Creamery out of

California used to ship their milk to Oregon and Washington. The distributor

stopped shipping their product so Noris stepped in and filled the niche.

Give them a call and see if they are delivering anywhere in your area.

[Guest guest]

< The Percoset should get you through the rough times until you figure out

how

to fix your problem. Sure sounds like gallstones. Percoset got me through

many attacks, works like magic, but you don't want to rely on it for too

long. Folks here will be able to give you a lot of helpful advice, and

maybe even help solve your problem.

>>

***************

Hello,

I agree, don't rely on it. Any kind of painkillers are very hard on our

livers. You want to be easy on your liver if you're having GB problems.

Also, Percocet has that stuff in it that's in Tylenol. Too much is extremely

dangerous. Just keep it for bad pain problems. Of course, this is my

opinion. Read up on the acetominophen, whoever it's spelled. It's very bad

stuff.

Susie

[Guest guest]

Not much of a doctor!

The Percoset should get you through the rough times until you figure out how

to fix your problem. Sure sounds like gallstones. Percoset got me through

many attacks, works like magic, but you don't want to rely on it for too

long. Folks here will be able to give you a lot of helpful advice, and

maybe even help solve your problem.

Good luck.

Debra

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