Re: New to this site, help

[Guest guest]

In a message dated 5/15/00 7:52:44 PM Pacific Daylight Time,

kanswede@... writes:

<< you have to continue the PT/stretching to take

care of the tort >>

My 8mos old son had first PT session thru EI. PT has a 6yr old that had tort,

She stretches her everday because she still gets tight all the way down to

her legs as well as neck. Belinda (Indiana)

[Guest guest]

First I have to ask a favor...PLEASE give us a name to call you, don't make me address you as "BM"

Ok, that's out of the way As a matter of fact, there ARE photos in the File's section of before and after. Let's see.... King has before/after pics; Grace has pics of before treatment and 6 wks after being put in the band ( C's file). I think that's all. Hopefully there will be more coming from some recent graduates. (hint-hint, you guys!)

If your daughter isn't getting much relief from the tort with PT 3xweekly, can she go more often? Can the physical therapist go another route? Try some different excersizes? Have they taught you some things you can do at home with her? I don't think the band will really be very instrumental in correcting the torticollis. It will make it a little easier for her to roll her head from side to side and do some stretching on her own.

Are you POSITIVE your insurance doesn't cover the band? Sometimes you have to be pretty aggressive with them (nicely aggressive, I mean . The people at Cranial Tech should be pretty helpful in finding out those kinds of things and helping you get it covered.

You asked if you were doing the right thing. YES! You're doing the right thing by asking questions and researching methods and alternatives. You are doing great!

Kaye/subscribe/Plagiocephaly

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

From: bmloper@...

Plagiocephalyegroups

Sent: Monday, May 15, 2000 9:27 PM

Subject: New to this site, help

I have been viewing the pics in the file section and am wondering if anyone has before and after pics when using the DOC band. My daugter has Tort and Plagio. She has seen two pediatricians, one neurologist, and one neurosurgeon. She has had a CAT scan of her head and her cervical spine and she gets a MRI of her spine tomorrow. I live in Austin Texas and am going to Dallas Friday to do the casting and measurements. We also go to physical therapy three times a week and have been doing this now for about two months...with little results. To my understanding insurance does not cover this. $2600 to correct my baby's head...not a bad price if you ask me. I understand that the doctors want to rule out other possible causes with all these tests, but none of them have suggested correction of the shape of her head. They all seem to say the same thing...."her hair will grow in and she'll be fine, no one is perfect..." Does anyone know of anyone who hasn't gotten results with the DOC band or someone who wished that they would have gotten it sooner because the facial features got worse? My daughter's chin is a tad lopsidded and her ear is somewhat indented. Does anyone know if the Band also helps the Torticollis too?Sorry so lengthy......HELP! Am I doing the right thing?

[Guest guest]

My understanding is that you have to continue the PT/stretching to take

care of the tort. Anyone else know for sure?

________________________________________________________________

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[Guest guest]

, are Grace's pics the one's with all of the different decorations

on the band? If yes, how did you do it all? Was it hard to change? Ann

________________________________________________________________

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[Guest guest]

I've read a few different times about the band being 2500 dollars, why is

it 3500 here in KS? Does anyone know where the cost comes from?

________________________________________________________________

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Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

So do you think that our kids will always have tort? I hoped it was

going to go away!

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[Guest guest]

I think those are her pictures you are referring to (in the folder named C.).

Here's a list of what's in Grace's band decorating basket:

Velcro

Rub-on transfers

Lot's of Tulip (or cheapie) fabric paint

Bows

Foam letters and bugs

Wiggly eyeballs

Clear nail polish

ribbon roses

animals and bugs made from grosgrain ribbon (bought at Hobby Lobby)

hot glue gun

fabric trim/lace trim

Usually, what I end up doing is putting rub-on transfers on the band, sealing it with clear nail polish and hot gluing "details" (ribbon roses where there are flowers on the transfer, bows where there are bows, etc.). I also do a lot of the Tulip paints in all kinds of designs. The only downside to the paint is it has to dry. I time it for when she's going to have PT, then I know she'll have it off for a couple of hours. I've hot glued ribbon and lace trim around the band like a head band. And glued eyeballs and painted a face on the back of her head for April Fool's

The great thing about the hot glue, Tulip paints and rub-on transfers is they last around a week or two. Then you get to "play" again! If you want a more permanent decoration, the ribbon and bows and nail polish probably aren't the way to go. The bows do get a little dirty and worn in about 10 days; and the nail polish starts to flake in about the same amount of time. But, for me, it's a lot of fun!

Kaye/subscribe/Plagiocephaly

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

From: KENT A

Plagiocephalyegroups

Sent: Monday, May 15, 2000 9:55 PM

Subject: Re: New to this site, help

, are Grace's pics the one's with all of the different decorationson the band? If yes, how did you do it all? Was it hard to change? Ann________________________________________________________________YOU'RE PAYING TOO MUCH FOR THE INTERNET!Juno now offers FREE Internet Access!Try it today - there's no risk! For your FREE software, visit:http://dl.www.juno.com/get/tagj.

[Guest guest]

I think someone from CT answered that question awhile back (I had wondered it myself). Let me see if I can find the post....

Kaye/subscribe/Plagiocephaly

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

From: KENT A

Plagiocephalyegroups

Sent: Monday, May 15, 2000 9:59 PM

Subject: Re: New to this site, help

I've read a few different times about the band being 2500 dollars, why isit 3500 here in KS? Does anyone know where the cost comes from?________________________________________________________________YOU'RE PAYING TOO MUCH FOR THE INTERNET!Juno now offers FREE Internet Access!Try it today - there's no risk! For your FREE software, visit:http://dl.www.juno.com/get/tagj.

[Guest guest]

Hmmm...I can't find it. Maybe someone else out there knows which one I'm remembering???

Kaye/subscribe/Plagiocephaly

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

From: Kaye

Plagiocephalyegroups

Sent: Monday, May 15, 2000 10:16 PM

Subject: Re: New to this site, help

I think someone from CT answered that question awhile back (I had wondered it myself). Let me see if I can find the post....

Kaye/subscribe/Plagiocephaly

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

From: KENT A

Plagiocephalyegroups

Sent: Monday, May 15, 2000 9:59 PM

Subject: Re: New to this site, help

I've read a few different times about the band being 2500 dollars, why isit 3500 here in KS? Does anyone know where the cost comes from?________________________________________________________________YOU'RE PAYING TOO MUCH FOR THE INTERNET!Juno now offers FREE Internet Access!Try it today - there's no risk! For your FREE software, visit:http://dl.www.juno.com/get/tagj.

[Guest guest]

,

Thanks for responding. I am the one who wrote about too. She

has gone through a lot of testing to in my opinion prove that she has

tort and plagio. One pediatrician even had her do an untrsound on her

abdomin. I figured that they knew what they were doing. My opinion of

the med proffession has somewhat gone downhill.

One thing that I have noticed is that she screams her head off if I

touch her neck, but if I massage her back up to her neck while having

her in a sitting possition, she seems to tollerate the stretching

better. Maybe the MRI on her spine would be a good idea?

I will see about getting some pictures in the file section...under

.

Thanks,

--- In Plagiocephalyegroups, " Kaye " <angelakaye@f...>

wrote:

> First I have to ask a favor...PLEASE give us a name to call you,

don't make me address you as " BM "

>

> Ok, that's out of the way As a matter of fact, there ARE photos

in the File's section of before and after. Let's see.... King

has before/after pics; Grace has pics of before treatment and 6 wks

after being put in the band ( C's file). I think that's all.

Hopefully there will be more coming from some recent graduates. (hint-

hint, you guys!)

>

> If your daughter isn't getting much relief from the tort with PT

3xweekly, can she go more often? Can the physical therapist go

another route? Try some different excersizes? Have they taught you

some things you can do at home with her? I don't think the band will

really be very instrumental in correcting the torticollis. It will

make it a little easier for her to roll her head from side to side

and do some stretching on her own.

>

> Are you POSITIVE your insurance doesn't cover the band? Sometimes

you have to be pretty aggressive with them (nicely aggressive, I

mean . The people at Cranial Tech should be pretty helpful in

finding out those kinds of things and helping you get it covered.

>

> You asked if you were doing the right thing. YES! You're doing

the right thing by asking questions and researching methods and

alternatives. You are doing great!

>

> Kaye

> /subscribe/Plagiocephaly

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

> From: bmloper@e...

> Plagiocephalyegroups

> Sent: Monday, May 15, 2000 9:27 PM

> Subject: New to this site, help

>

>

> I have been viewing the pics in the file section and am wondering

if

> anyone has before and after pics when using the DOC band. My

daugter

> has Tort and Plagio. She has seen two pediatricians, one

neurologist,

> and one neurosurgeon. She has had a CAT scan of her head and her

> cervical spine and she gets a MRI of her spine tomorrow. I live

in

> Austin Texas and am going to Dallas Friday to do the casting and

> measurements. We also go to physical therapy three times a week

and

> have been doing this now for about two months...with little

results.

> To my understanding insurance does not cover this. $2600 to

correct

> my baby's head...not a bad price if you ask me. I understand that

the

> doctors want to rule out other possible causes with all these

tests,

> but none of them have suggested correction of the shape of her

head.

> They all seem to say the same thing.... " her hair will grow in and

> she'll be fine, no one is perfect... " Does anyone know of anyone

who

> hasn't gotten results with the DOC band or someone who wished

that

> they would have gotten it sooner because the facial features got

> worse? My daughter's chin is a tad lopsidded and her ear is

somewhat

> indented. Does anyone know if the Band also helps the Torticollis

too?

> Sorry so lengthy......HELP! Am I doing the right thing?

>

>

> --------------------------------------------------------------------

----------

>

>

>

> --------------------------------------------------------------------

----------

>

[Guest guest]

It depends on the type of torticollis. If it's Benign Torticollis, it's likely not to recur (and actually has a good chance of resolving by itself). If it's Spasmodic Tort., it may very well be a lifelong problem (but this type usually occurs during adulthood - and is often caused by a neurological problem). If it's Congenital Torticollis, caused by a SCM pseudo-tumor or scarring, and requires surgical correction, it probably will not come back. There's also something called Ocular Torticollis which is caused by eyesight imbalance. And, of course, torticollis can be caused by an actual deformity of the neck vertebra or neck muscles.

Torticollis is really a indication of an underlying problem most of the time. A child with strabismus can get tort. A person taking Haldol for a long period of time can get Tardive Dyskenisia and torticollis. A baby can be cramped in the womb and get congenital tort. Etc. etc.

Kaye/subscribe/Plagiocephaly

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

From: KENT A

Plagiocephalyegroups

Sent: Monday, May 15, 2000 10:11 PM

Subject: Re: New to this site, help

So do you think that our kids will always have tort? I hoped it wasgoing to go away!________________________________________________________________YOU'RE PAYING TOO MUCH FOR THE INTERNET!Juno now offers FREE Internet Access!Try it today - there's no risk! For your FREE software, visit:http://dl.www.juno.com/get/tagj

[Guest guest]

-

I'm so sorry I didn't realize who you were!

Have the doctors given you any indication of what they were looking for as a differential diagnosis? What were they trying to "rule out" with all these tests? Does she have other problems as well as the tort and plague?

It seems all my notes to you so far have been question after question. I hope you don't feel hounded!

Kaye/subscribe/Plagiocephaly

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

From: bmloper@...

Plagiocephalyegroups

Sent: Monday, May 15, 2000 10:34 PM

Subject: Re: New to this site, help

,Thanks for responding. I am the one who wrote about too. She has gone through a lot of testing to in my opinion prove that she has tort and plagio. One pediatrician even had her do an untrsound on her abdomin. I figured that they knew what they were doing. My opinion of the med proffession has somewhat gone downhill.One thing that I have noticed is that she screams her head off if I touch her neck, but if I massage her back up to her neck while having her in a sitting possition, she seems to tollerate the stretching better. Maybe the MRI on her spine would be a good idea?I will see about getting some pictures in the file section...under .Thanks,> First I have to ask a favor...PLEASE give us a name to call you, don't make me address you as "BM" > > Ok, that's out of the way As a matter of fact, there ARE photos in the File's section of before and after. Let's see.... King has before/after pics; Grace has pics of before treatment and 6 wks after being put in the band ( C's file). I think that's all. Hopefully there will be more coming from some recent graduates. (hint-hint, you guys!)> > If your daughter isn't getting much relief from the tort with PT 3xweekly, can she go more often? Can the physical therapist go another route? Try some different excersizes? Have they taught you some things you can do at home with her? I don't think the band will really be very instrumental in correcting the torticollis. It will make it a little easier for her to roll her head from side to side and do some stretching on her own.> > Are you POSITIVE your insurance doesn't cover the band? Sometimes you have to be pretty aggressive with them (nicely aggressive, I mean . The people at Cranial Tech should be pretty helpful in finding out those kinds of things and helping you get it covered.> > You asked if you were doing the right thing. YES! You're doing the right thing by asking questions and researching methods and alternatives. You are doing great!> > Kaye> /subscribe/Plagiocephaly> ----- Original Message ----- > From: bmloper@e... > Plagiocephalyegroups > Sent: Monday, May 15, 2000 9:27 PM> Subject: New to this site, help> > > I have been viewing the pics in the file section and am wondering if > anyone has before and after pics when using the DOC band. My daugter > has Tort and Plagio. She has seen two pediatricians, one neurologist, > and one neurosurgeon. She has had a CAT scan of her head and her > cervical spine and she gets a MRI of her spine tomorrow. I live in > Austin Texas and am going to Dallas Friday to do the casting and > measurements. We also go to physical therapy three times a week and > have been doing this now for about two months...with little results. > To my understanding insurance does not cover this. $2600 to correct > my baby's head...not a bad price if you ask me. I understand that the > doctors want to rule out other possible causes with all these tests, > but none of them have suggested correction of the shape of her head. > They all seem to say the same thing...."her hair will grow in and > she'll be fine, no one is perfect..." Does anyone know of anyone who > hasn't gotten results with the DOC band or someone who wished that > they would have gotten it sooner because the facial features got > worse? My daughter's chin is a tad lopsidded and her ear is somewhat > indented. Does anyone know if the Band also helps the Torticollis too?> Sorry so lengthy......HELP! Am I doing the right thing? > > > ------------------------------------------------------------------------------> > > > ------------------------------------------------------------------------------>

[Guest guest]

,

From what they have said, they are ruleing out other neurological

issues. Vague I know, I even asked that and once again, " well, we'll

know after the tests. " She has no other problems. She was quite

squirmy and talkative at her visit. Laughing and carrying on with

raspberries and bubbles. She would not straighten her head and

screamed when they touched the side of her head. Other than that she

seems healthy. I put in some pic of her at three months. I am gonna

try and get some of the back of her head and some recent pics scanned

in.

The first pedi asked for the CAT scans to rule out a brain tumor. And

asked for an ultrsound of her abdomin because she thaught it looked

prominent.

Question....Sometime when I pick my baby up or when we are doing

exercises I feel/hear a pop/crack sound. No one else seems to notice

this. Is this normal? By the way, I have a five year old that never

sounded like a rice crispy. The neurologist said " humm " when I told

him...

Another thing that she does is hold her (right) arm out backwards

when you pick her up.Palm facing backwards. When she was born, all 10

pounds of her, her right arm was bruised and she held it straight out

for about a month. She uses the right arm ok when playing and grabs

at thing fine now. So, to be long winded...maybe they think something

else is wrong with her. I do remember the Dr. saying something about

spinal fluid and tissue being something to look at when the MRI is

done. But her head is still flat in the back and according to the CAT

scan report they said she has plagio.

Thanks for reading my book,

> > First I have to ask a favor...PLEASE give us a name to call

you,

> don't make me address you as " BM "

> >

> > Ok, that's out of the way As a matter of fact, there ARE

photos

> in the File's section of before and after. Let's see....

King

> has before/after pics; Grace has pics of before treatment and 6

wks

> after being put in the band ( C's file). I think that's

all.

> Hopefully there will be more coming from some recent graduates.

(hint-

> hint, you guys!)

> >

> > If your daughter isn't getting much relief from the tort with

PT

> 3xweekly, can she go more often? Can the physical therapist go

> another route? Try some different excersizes? Have they taught

you

> some things you can do at home with her? I don't think the band

will

> really be very instrumental in correcting the torticollis. It

will

> make it a little easier for her to roll her head from side to

side

> and do some stretching on her own.

> >

> > Are you POSITIVE your insurance doesn't cover the band?

Sometimes

> you have to be pretty aggressive with them (nicely aggressive, I

> mean . The people at Cranial Tech should be pretty helpful in

> finding out those kinds of things and helping you get it covered.

> >

> > You asked if you were doing the right thing. YES! You're

doing

> the right thing by asking questions and researching methods and

> alternatives. You are doing great!

> >

> > Kaye

> > /subscribe/Plagiocephaly

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

> > From: bmloper@e...

> > Plagiocephalyegroups

> > Sent: Monday, May 15, 2000 9:27 PM

> > Subject: New to this site, help

> >

> >

> > I have been viewing the pics in the file section and am

wondering

> if

> > anyone has before and after pics when using the DOC band. My

> daugter

> > has Tort and Plagio. She has seen two pediatricians, one

> neurologist,

> > and one neurosurgeon. She has had a CAT scan of her head and

her

> > cervical spine and she gets a MRI of her spine tomorrow. I

live

> in

> > Austin Texas and am going to Dallas Friday to do the casting

and

> > measurements. We also go to physical therapy three times a

week

> and

> > have been doing this now for about two months...with little

> results.

> > To my understanding insurance does not cover this. $2600 to

> correct

> > my baby's head...not a bad price if you ask me. I understand

that

> the

> > doctors want to rule out other possible causes with all these

> tests,

> > but none of them have suggested correction of the shape of

her

> head.

> > They all seem to say the same thing.... " her hair will grow in

and

> > she'll be fine, no one is perfect... " Does anyone know of

anyone

> who

> > hasn't gotten results with the DOC band or someone who wished

> that

> > they would have gotten it sooner because the facial features

got

> > worse? My daughter's chin is a tad lopsidded and her ear is

> somewhat

> > indented. Does anyone know if the Band also helps the

Torticollis

> too?

> > Sorry so lengthy......HELP! Am I doing the right thing?

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

[Guest guest]

,

Where is the "rice crispy" sound coming from? It is "common" for

babies w/ plagio. to have hip displaysia - although, I haven't heard of

anyone on this site reporting it. You should have your doctor check

this.

Have you considered hunting down a ped. who is familiar with plagio./

torticollis? Perhaps he/she could be more helpful in making a definite

diagnosis.

Also, with all these tests, ask your doctor firmly what they are looking

for. Tell them you want to know EVERYTHING. You have EVERY

right to know what is going on with your baby.

I'm going to check your pictures now......... :0)

Kendra

bmloper@... wrote:

,

>From what they have said, they are ruleing out other neurological

issues. Vague I know, I even asked that and once again, "well,

we'll

know after the tests." She has no other problems. She was quite

squirmy and talkative at her visit. Laughing and carrying on with

raspberries and bubbles. She would not straighten her head and

screamed when they touched the side of her head. Other than that

she

seems healthy. I put in some pic of her at three months. I am gonna

try and get some of the back of her head and some recent pics scanned

in.

The first pedi asked for the CAT scans to rule out a brain tumor.

And

asked for an ultrsound of her abdomin because she thaught it looked

prominent.

Question....Sometime when I pick my baby up or when we are doing

exercises I feel/hear a pop/crack sound. No one else seems to notice

this. Is this normal? By the way, I have a five year old that never

sounded like a rice crispy. The neurologist said "humm" when I

told

him...

Another thing that she does is hold her (right) arm out backwards

when you pick her up.Palm facing backwards. When she was born,

all 10

pounds of her, her right arm was bruised and she held it straight

out

for about a month. She uses the right arm ok when playing and grabs

at thing fine now. So, to be long winded...maybe they think something

else is wrong with her. I do remember the Dr. saying something

about

spinal fluid and tissue being something to look at when the MRI

is

done. But her head is still flat in the back and according to the

CAT

scan report they said she has plagio.

Thanks for reading my book,

> > First I have to ask a favor...PLEASE give us a

name to call

you,

> don't make me address you as "BM"

> >

> > Ok, that's out of the way As a matter

of fact, there ARE

photos

> in the File's section of before and after.

Let's see....

King

> has before/after pics; Grace has pics of before treatment

and 6

wks

> after being put in the band ( C's file).

I think that's

all.

> Hopefully there will be more coming from some recent

graduates.

(hint-

> hint, you guys!)

> >

> > If your daughter isn't getting much relief from

the tort with

PT

> 3xweekly, can she go more often? Can the physical

therapist go

> another route? Try some different excersizes?

Have they taught

you

> some things you can do at home with her? I

don't think the band

will

> really be very instrumental in correcting the torticollis.

It

will

> make it a little easier for her to roll her head

from side to

side

> and do some stretching on her own.

> >

> > Are you POSITIVE your insurance doesn't cover the

band?

Sometimes

> you have to be pretty aggressive with them (nicely

aggressive, I

> mean . The people at Cranial Tech should

be pretty helpful in

> finding out those kinds of things and helping you

get it covered.

> >

> > You asked if you were doing the right thing.

YES! You're

doing

> the right thing by asking questions and researching

methods and

> alternatives. You are doing great!

> >

> > Kaye

> > /subscribe/Plagiocephaly

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

> > From: bmloper@e...

> > Plagiocephalyegroups

> > Sent: Monday, May 15, 2000 9:27 PM

> > Subject: New to this site,

help

> >

> >

> > I have been viewing the pics in the

file section and am

wondering

> if

> > anyone has before and after pics when

using the DOC band. My

> daugter

> > has Tort and Plagio. She has seen two

pediatricians, one

> neurologist,

> > and one neurosurgeon. She has had a

CAT scan of her head and

her

> > cervical spine and she gets a MRI of

her spine tomorrow. I

live

> in

> > Austin Texas and am going to Dallas

Friday to do the casting

and

> > measurements. We also go to physical

therapy three times a

week

> and

> > have been doing this now for about

two months...with little

> results.

> > To my understanding insurance does

not cover this. $2600 to

> correct

> > my baby's head...not a bad price if

you ask me. I understand

that

> the

> > doctors want to rule out other possible

causes with all these

> tests,

> > but none of them have suggested correction

of the shape of

her

> head.

> > They all seem to say the same thing...."her

hair will grow in

and

> > she'll be fine, no one is perfect..."

Does anyone know of

anyone

> who

> > hasn't gotten results with the DOC

band or someone who wished

> that

> > they would have gotten it sooner because

the facial features

got

> > worse? My daughter's chin is a tad

lopsidded and her ear is

> somewhat

> > indented. Does anyone know if the Band

also helps the

Torticollis

> too?

> > Sorry so lengthy......HELP! Am I doing

the right thing?

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

[Guest guest]

I agree with Kendra about the hip dysplasia. Especially given her birth weight. Her pediatrician would be checking for it at her well-baby checkups, though.

Do you have a copy of 's CT scan reports? The term "plagiocephaly" is a description of head shape, not necessarily a diagnosis. "Positional Plagiocephaly" is a diagnosis. What I mean by that is, I wonder if they elaborated further in the report???

I'm also going to agree with Kendra about being "pushy" about getting answers from the doctors. The more you know about 's problem, the more you will be able to do for her! Don't ever let them lead you to believe you don't need to know the details.

You sound a little timid, so it might be hard to put your foot down when it comes to talking to someone like your daughter's neurosurgeon. But, maybe you have a mouthy family member? Or a bossy friend? You know that irritating habit that "certain someone" has of interrupting you and telling you what to do? Put it to work for you and sic' them on the doctors!

Kaye/subscribe/Plagiocephaly

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

From: & Kendra

Plagiocephalyegroups

Sent: Monday, May 15, 2000 11:38 PM

Subject: Re: New to this site, help

, Where is the "rice crispy" sound coming from? It is "common" for babies w/ plagio. to have hip displaysia - although, I haven't heard of anyone on this site reporting it. You should have your doctor check this. Have you considered hunting down a ped. who is familiar with plagio./ torticollis? Perhaps he/she could be more helpful in making a definite diagnosis. Also, with all these tests, ask your doctor firmly what they are looking for. Tell them you want to know EVERYTHING. You have EVERY right to know what is going on with your baby. I'm going to check your pictures now......... :0) Kendra bmloper@... wrote: , >From what they have said, they are ruleing out other neurological issues. Vague I know, I even asked that and once again, "well, we'll know after the tests." She has no other problems. She was quite squirmy and talkative at her visit. Laughing and carrying on with raspberries and bubbles. She would not straighten her head and screamed when they touched the side of her head. Other than that she seems healthy. I put in some pic of her at three months. I am gonna try and get some of the back of her head and some recent pics scanned in. The first pedi asked for the CAT scans to rule out a brain tumor. And asked for an ultrsound of her abdomin because she thaught it looked prominent. Question....Sometime when I pick my baby up or when we are doing exercises I feel/hear a pop/crack sound. No one else seems to notice this. Is this normal? By the way, I have a five year old that never sounded like a rice crispy. The neurologist said "humm" when I told him... Another thing that she does is hold her (right) arm out backwards when you pick her up.Palm facing backwards. When she was born, all 10 pounds of her, her right arm was bruised and she held it straight out for about a month. She uses the right arm ok when playing and grabs at thing fine now. So, to be long winded...maybe they think something else is wrong with her. I do remember the Dr. saying something about spinal fluid and tissue being something to look at when the MRI is done. But her head is still flat in the back and according to the CAT scan report they said she has plagio. Thanks for reading my book,

[Guest guest]

Kendra,

Thanks for writing. I haven't asked a doctor to look specificaly at

her hips I guess because she stands a lot. She like to be in a

standing position and I figured that her hips are fine. She has a big

belly with very small hips and tiny butt. The sound seems to be

coming from her shoulders or upper back? We have another pedi

appointment this Thursday and the cranial tech visit Friday.

I try to remember everything the doctor says. It's kind of hard to

focus when she is bouncing off the walls. I kid you not...she only

gets this active while at the doctors. She laughs and squeels so

loud. My husband wasn't able to go to the appointment with the new

neurologist who wants to do the MRI. As sad as it sounds, eventhough

I know she has plagio and they do too...we've spent so much money

already and our deductable has been met why not do the final tell all

test. I think I will have more ammo when I go against insurance as

well. I do plan on fighting it if they decide not to cover it.

It looks like there is another new person needing help.

Thanks again,

> > > > First I have to ask a favor...PLEASE give us a name to call

> > you,

> > > don't make me address you as " BM "

> > > >

> > > > Ok, that's out of the way As a matter of fact, there ARE

> > photos

> > > in the File's section of before and after. Let's

see....

> > King

> > > has before/after pics; Grace has pics of before treatment and

6

> > wks

> > > after being put in the band ( C's file). I think that's

> > all.

> > > Hopefully there will be more coming from some recent

graduates.

> > (hint-

> > > hint, you guys!)

> > > >

> > > > If your daughter isn't getting much relief from the tort

with

> > PT

> > > 3xweekly, can she go more often? Can the physical therapist

go

> > > another route? Try some different excersizes? Have they

taught

> > you

> > > some things you can do at home with her? I don't think the

band

> > will

> > > really be very instrumental in correcting the torticollis. It

> > will

> > > make it a little easier for her to roll her head from side to

> > side

> > > and do some stretching on her own.

> > > >

> > > > Are you POSITIVE your insurance doesn't cover the band?

> > Sometimes

> > > you have to be pretty aggressive with them (nicely

aggressive, I

> > > mean . The people at Cranial Tech should be pretty helpful

in

> > > finding out those kinds of things and helping you get it

covered.

> > > >

> > > > You asked if you were doing the right thing. YES! You're

> > doing

> > > the right thing by asking questions and researching methods

and

> > > alternatives. You are doing great!

> > > >

> > > > Kaye

> > > > /subscribe/Plagiocephaly

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

> > > > From: bmloper@e...

> > > > Plagiocephalyegroups

> > > > Sent: Monday, May 15, 2000 9:27 PM

> > > > Subject: New to this site, help

> > > >

> > > >

> > > > I have been viewing the pics in the file section and am

> > wondering

> > > if

> > > > anyone has before and after pics when using the DOC band.

My

> > > daugter

> > > > has Tort and Plagio. She has seen two pediatricians, one

> > > neurologist,

> > > > and one neurosurgeon. She has had a CAT scan of her head

and

> > her

> > > > cervical spine and she gets a MRI of her spine tomorrow. I

> > live

> > > in

> > > > Austin Texas and am going to Dallas Friday to do the

casting

> > and

> > > > measurements. We also go to physical therapy three times a

> > week

> > > and

> > > > have been doing this now for about two months...with

little

> > > results.

> > > > To my understanding insurance does not cover this. $2600

to

> > > correct

> > > > my baby's head...not a bad price if you ask me. I

understand

> > that

> > > the

> > > > doctors want to rule out other possible causes with all

these

> > > tests,

> > > > but none of them have suggested correction of the shape of

> > her

> > > head.

> > > > They all seem to say the same thing.... " her hair will

grow in

> > and

> > > > she'll be fine, no one is perfect... " Does anyone know of

> > anyone

> > > who

> > > > hasn't gotten results with the DOC band or someone who

wished

> > > that

> > > > they would have gotten it sooner because the facial

features

> > got

> > > > worse? My daughter's chin is a tad lopsidded and her ear

is

> > > somewhat

> > > > indented. Does anyone know if the Band also helps the

> > Torticollis

> > > too?

> > > > Sorry so lengthy......HELP! Am I doing the right thing?

> > > >

> > > >

> > > > ------------------------------------------------------------

----

> >

> > ----

> > > ----------

> > > >

> > > >

> > > >

> > > > ------------------------------------------------------------

----

> >

> > ----

> > > ----------

> > > >

[Guest guest]

howdy. me again.

Yes I have the whole CAT scan. Photos and report. I have been so

ticked off at these doctors and I think they feed on my frustration.

I believe that the neurosurgeon is doing the MRI to make it look like

he is addressing my concerns and covering himself. I specificaly

asked him about the DOC band and he said that he doesn't recommend

people for that and went on about the controversy. When I braught the

CAT scan and report to the visit with me and talked about the

sternomastoid (world worst speller, bear with me)muscle shortening,

torticollis and mentioned seeing other doctors he said lets do a MRI

to rule out any other possibilities. I figured why not, couldn't

hurt. At least he wants to do something rather than saying " we'll

wait till her hair grows in " . I told him that I was going to do the

DOC band regardless of what he thaught. He smiled and said lets see

you in three months and said that if I faxed him a list of PTs from

my insurance he could recommend a good one for me. I thought that was

a nice gesture. Has anyone had this much trouble getting a doctor to

recomend the band?

Trust me I feel so much better talking with you all that I feel

stronger than ever and plan on being more alert and less distracted

by during my next visit!

Thanks,

>

> ,

> >From what they have said, they are ruleing out other

neurological

> issues. Vague I know, I even asked that and once again, " well,

we'll

> know after the tests. " She has no other problems. She was quite

> squirmy and talkative at her visit. Laughing and carrying on

with

> raspberries and bubbles. She would not straighten her head and

> screamed when they touched the side of her head. Other than

that she

> seems healthy. I put in some pic of her at three months. I am

gonna

> try and get some of the back of her head and some recent pics

scanned

> in.

> The first pedi asked for the CAT scans to rule out a brain

tumor. And

> asked for an ultrsound of her abdomin because she thaught it

looked

> prominent.

> Question....Sometime when I pick my baby up or when we are

doing

> exercises I feel/hear a pop/crack sound. No one else seems to

notice

> this. Is this normal? By the way, I have a five year old that

never

> sounded like a rice crispy. The neurologist said " humm " when I

told

> him...

> Another thing that she does is hold her (right) arm out

backwards

> when you pick her up.Palm facing backwards. When she was born,

all 10

> pounds of her, her right arm was bruised and she held it

straight out

> for about a month. She uses the right arm ok when playing and

grabs

> at thing fine now. So, to be long winded...maybe they think

something

> else is wrong with her. I do remember the Dr. saying something

about

> spinal fluid and tissue being something to look at when the MRI

is

> done. But her head is still flat in the back and according to

the CAT

> scan report they said she has plagio.

> Thanks for reading my book,

>

[Guest guest]

yay !!

So glad to hear you're feeling better! You'll do great at your

next appt.

Kendra

bmloper@... wrote:

howdy. me again.

Yes I have the whole CAT scan. Photos and report. I have been so

ticked off at these doctors and I think they feed on my frustration.

I believe that the neurosurgeon is doing the MRI to make it look

like

he is addressing my concerns and covering himself. I specificaly

asked him about the DOC band and he said that he doesn't recommend

people for that and went on about the controversy. When I braught

the

CAT scan and report to the visit with me and talked about the

sternomastoid (world worst speller, bear with me)muscle shortening,

torticollis and mentioned seeing other doctors he said lets do

a MRI

to rule out any other possibilities. I figured why not, couldn't

hurt. At least he wants to do something rather than saying "we'll

wait till her hair grows in". I told him that I was going to do

the

DOC band regardless of what he thaught. He smiled and said lets

see

you in three months and said that if I faxed him a list of PTs

from

my insurance he could recommend a good one for me. I thought that

was

a nice gesture. Has anyone had this much trouble getting a doctor

to

recomend the band?

Trust me I feel so much better talking with you all that I feel

stronger than ever and plan on being more alert and less distracted

by during my next visit!

Thanks,

>

> ,

> >From what they have said, they are ruleing

out other

neurological

> issues. Vague I know, I even asked that

and once again, "well,

we'll

> know after the tests." She has no other

problems. She was quite

> squirmy and talkative at her visit. Laughing

and carrying on

with

> raspberries and bubbles. She would not

straighten her head and

> screamed when they touched the side of

her head. Other than

that she

> seems healthy. I put in some pic of her

at three months. I am

gonna

> try and get some of the back of her head

and some recent pics

scanned

> in.

> The first pedi asked for the CAT scans

to rule out a brain

tumor. And

> asked for an ultrsound of her abdomin

because she thaught it

looked

> prominent.

> Question....Sometime when I pick my baby

up or when we are

doing

> exercises I feel/hear a pop/crack sound.

No one else seems to

notice

> this. Is this normal? By the way, I have

a five year old that

never

> sounded like a rice crispy. The neurologist

said "humm" when I

told

> him...

> Another thing that she does is hold her

(right) arm out

backwards

> when you pick her up.Palm facing backwards.

When she was born,

all 10

> pounds of her, her right arm was bruised

and she held it

straight out

> for about a month. She uses the right

arm ok when playing and

grabs

> at thing fine now. So, to be long winded...maybe

they think

something

> else is wrong with her. I do remember

the Dr. saying something

about

> spinal fluid and tissue being something

to look at when the MRI

is

> done. But her head is still flat in the

back and according to

the CAT

> scan report they said she has plagio.

> Thanks for reading my book,

>

[Guest guest]

In Wisconsin was told $2500.

Tammy &

[Guest guest]

OK, I was considering a move to Chicago for a minute there!!

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

Everyone has heard the " hair will cover it " line, we are some of thos that

didn't get started early enough, her facial features appear more asy but I

think its jst becasue her face is bigger and that's part of the reason I

think it should be tx because I can just imagine her head at adult size! -

Liz

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

From: bmloper@... <bmloper@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Monday, May 15, 2000 7:23 PM

Subject: New to this site, help

>I have been viewing the pics in the file section and am wondering if

>anyone has before and after pics when using the DOC band. My daugter

>has Tort and Plagio. She has seen two pediatricians, one neurologist,

>and one neurosurgeon. She has had a CAT scan of her head and her

>cervical spine and she gets a MRI of her spine tomorrow. I live in

>Austin Texas and am going to Dallas Friday to do the casting and

>measurements. We also go to physical therapy three times a week and

>have been doing this now for about two months...with little results.

>To my understanding insurance does not cover this. $2600 to correct

>my baby's head...not a bad price if you ask me. I understand that the

>doctors want to rule out other possible causes with all these tests,

>but none of them have suggested correction of the shape of her head.

>They all seem to say the same thing.... " her hair will grow in and

>she'll be fine, no one is perfect... " Does anyone know of anyone who

>hasn't gotten results with the DOC band or someone who wished that

>they would have gotten it sooner because the facial features got

>worse? My daughter's chin is a tad lopsidded and her ear is somewhat

>indented. Does anyone know if the Band also helps the Torticollis too?

>Sorry so lengthy......HELP! Am I doing the right thing?

>

>

>------------------------------------------------------------------------

>Accurate impartial advice on everything from laptops to table saws.

>1/3020/4/_/689409/_/958444059/

>------------------------------------------------------------------------

>

>

[Guest guest]

300 in chicaho

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

From: KENT A <kanswede@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Monday, May 15, 2000 7:55 PM

Subject: Re: New to this site, help

>I've read a few different times about the band being 2500 dollars, why is

>it 3500 here in KS? Does anyone know where the cost comes from?

>________________________________________________________________

>YOU'RE PAYING TOO MUCH FOR THE INTERNET!

>Juno now offers FREE Internet Access!

>Try it today - there's no risk! For your FREE software, visit:

>http://dl.www.juno.com/get/tagj.

>

>------------------------------------------------------------------------

>Was the salesman clueless? Productopia has the answers.

>1/3019/4/_/689409/_/958445990/

>------------------------------------------------------------------------

>

>

[Guest guest]

Don't wait three mos if you feel it is necessarty now, you will probably

sdtill feel it necessary then and will have lost 3 good mos tx. - Liz

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

From: bmloper@... <bmloper@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Monday, May 15, 2000 10:22 PM

Subject: Re: New to this site, help

>howdy. me again.

>Yes I have the whole CAT scan. Photos and report. I have been so

>ticked off at these doctors and I think they feed on my frustration.

>I believe that the neurosurgeon is doing the MRI to make it look like

>he is addressing my concerns and covering himself. I specificaly

>asked him about the DOC band and he said that he doesn't recommend

>people for that and went on about the controversy. When I braught the

>CAT scan and report to the visit with me and talked about the

>sternomastoid (world worst speller, bear with me)muscle shortening,

>torticollis and mentioned seeing other doctors he said lets do a MRI

>to rule out any other possibilities. I figured why not, couldn't

>hurt. At least he wants to do something rather than saying " we'll

>wait till her hair grows in " . I told him that I was going to do the

>DOC band regardless of what he thaught. He smiled and said lets see

>you in three months and said that if I faxed him a list of PTs from

>my insurance he could recommend a good one for me. I thought that was

>a nice gesture. Has anyone had this much trouble getting a doctor to

>recomend the band?

>Trust me I feel so much better talking with you all that I feel

>stronger than ever and plan on being more alert and less distracted

>by during my next visit!

>Thanks,

>

>

>>

>> ,

>> >From what they have said, they are ruleing out other

>neurological

>> issues. Vague I know, I even asked that and once again, " well,

>we'll

>> know after the tests. " She has no other problems. She was quite

>> squirmy and talkative at her visit. Laughing and carrying on

>with

>> raspberries and bubbles. She would not straighten her head and

>> screamed when they touched the side of her head. Other than

>that she

>> seems healthy. I put in some pic of her at three months. I am

>gonna

>> try and get some of the back of her head and some recent pics

>scanned

>> in.

>> The first pedi asked for the CAT scans to rule out a brain

>tumor. And

>> asked for an ultrsound of her abdomin because she thaught it

>looked

>> prominent.

>> Question....Sometime when I pick my baby up or when we are

>doing

>> exercises I feel/hear a pop/crack sound. No one else seems to

>notice

>> this. Is this normal? By the way, I have a five year old that

>never

>> sounded like a rice crispy. The neurologist said " humm " when I

>told

>> him...

>> Another thing that she does is hold her (right) arm out

>backwards

>> when you pick her up.Palm facing backwards. When she was born,

>all 10

>> pounds of her, her right arm was bruised and she held it

>straight out

>> for about a month. She uses the right arm ok when playing and

>grabs

>> at thing fine now. So, to be long winded...maybe they think

>something

>> else is wrong with her. I do remember the Dr. saying something

>about

>> spinal fluid and tissue being something to look at when the MRI

>is

>> done. But her head is still flat in the back and according to

>the CAT

>> scan report they said she has plagio.

>> Thanks for reading my book,

>>

>

>

>------------------------------------------------------------------------

>Make music with anyone, anywhere, through FREE Internet

>recording studio software. FREE software download!

>1/3734/4/_/689409/_/958454818/

>------------------------------------------------------------------------

>

>

[Guest guest]

You just want to BELIEVE it's only $300!!

Go back to dream-land now Liz! :0)

Kendra

yeeman wrote:

ok what is my problem with putting in 300

- ITS $3000!

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

From: yeeman <yeeman@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Tuesday, May 16, 2000 7:21 AM

Subject: Re: New to this site, help

>300 in chicaho

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

>From: KENT A <kanswede@...>

>Plagiocephalyegroups <Plagiocephalyegroups>

>Date: Monday, May 15, 2000 7:55 PM

>Subject: Re: New to this site, help

>

>

>>I've read a few different times about the band being 2500 dollars,

why is

>>it 3500 here in KS? Does anyone know where the cost comes

from?

>>________________________________________________________________

>>YOU'RE PAYING TOO MUCH FOR THE INTERNET!

>>Juno now offers FREE Internet Access!

>>Try it today - there's no risk! For your FREE software,

visit:

>>http://dl.www.juno.com/get/tagj.

>>

>>------------------------------------------------------------------------

>>Was the salesman clueless? Productopia has the answers.

>>1/3019/4/_/689409/_/958445990/

>>------------------------------------------------------------------------

>>

>>

[Guest guest]

ok what is my problem with putting in 300 - ITS $3000!

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

From: yeeman <yeeman@...>

Plagiocephalyegroups <Plagiocephalyegroups>

Date: Tuesday, May 16, 2000 7:21 AM

Subject: Re: New to this site, help

>300 in chicaho

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

>From: KENT A <kanswede@...>

>Plagiocephalyegroups <Plagiocephalyegroups>

>Date: Monday, May 15, 2000 7:55 PM

>Subject: Re: New to this site, help

>

>

>>I've read a few different times about the band being 2500 dollars, why is

>>it 3500 here in KS? Does anyone know where the cost comes from?

>>________________________________________________________________

>>YOU'RE PAYING TOO MUCH FOR THE INTERNET!

>>Juno now offers FREE Internet Access!

>>Try it today - there's no risk! For your FREE software, visit:

>>http://dl.www.juno.com/get/tagj.

>>

>>------------------------------------------------------------------------

>>Was the salesman clueless? Productopia has the answers.

>>1/3019/4/_/689409/_/958445990/

>>------------------------------------------------------------------------

>>

>>