Re: Why do specialists hate bands/helmets---very bad visit

[Guest guest]

Wnedy,

I am so sorry to hear this! You lucked out w/two as@holes!! I'm so so

sorry you had to go through that. How did you hit him??? Everything

thing he said is total bull. I'd like to know who these " specialists "

get away w/it. I thought my specialist story was bad, yours takes the

cake. Why won't your ped just write the script??? The script doesn't

have to be from a specialist. Don't give up! This is your baby and

your decision to make. The hell with those drs that don't want to

help you.

I think they are against banding b/c they don't make any money off of

Cranial Tech and Orthomerica. I bet if they did they'd be writing

scripts like crazy!

Please keep us posted. Good luck and keep your chin up!

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc band

people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering, he

says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at age

5-6, ocular problems, and a host of other problems with big sounding

words. He even goes on to say that other kids will pic on his and

when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy

said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello, look

at Hannah's pics. Damn---wish I could show him. He says---no, they

cast the helmet directly to the head and that is the shape. I try to

explain that the orthotist shaves some away but it is worthless at

this point. He is now onto saying if you know what you want, why did

you come and how can you debate this with someone who specializes in

this field, etc... By this time I am friggin bawling my brains out

due to anger and confusion and the fact that I can kiss my script

goodbye. See ya Starband. This guy ain't gonna do it. And I'm

now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids

forehead is filled with fluid and his brain is getting squished and

that I need to do the 2D-3D CT Scan so we can see the fluid. His tx.

approach is to put my son on his stomach at bedtime---forget SIDS---

those kids are dying due to heart defects---and get him on his tummy

as much as possible. Yeah. Incidentally, I just put my son to bed

on his stomach and he screamed and cried and struggled until he

managed to flip right back onto his flat spot. Oh-good. Then---here

is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing

this whole mess start asking me if I drank caffeine during my

pregnancy, during breastfeeding, if I drank alcohol during either

period, if I smoked, what kind of water did I drink? How many sodas

or ice tea in an average week, medications, etc... Apparently they

are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

figure. Then he starts snapping pics of my kid--back and front while

I cry (so very effective). Then some woman comes in the door---which

was open the entire time---and I try one last time to explain to the

doctor that external pressures shaped my kid's head, doesn't it make

sense to put the helmet on and direct some external pressures in the

right places. Well, the unknown and unintroduced woman--is she a

receptionist, who the hell knows---butts in and explains to me that

it wasn't external pressures that did this, it was the weight of my

kids brain. Oh---shut up and someone please airlift me out of here

before I barf. Before leaving I ask the receptionist who that woman

was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so

pissed off I can barely think. I don't understand what the hell all

the confusion and disagreement is about. What is happening with this

disorder? Why are the specialists against banding? Why are they not

up on how the bands actually work? Why do they hate the band

people? And, God, the big question, where are they getting these

creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just who

DOES WRITE THESE SCRIPTS in this awful city? She gave me the name of

yet another neurology specialist. Ugh. But how long to get an

appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than ever,

I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it

is too late to educate him. And just think about all the kids and

parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

,

I can't believe what a horrific appointment you had. I take it this

guy was absent the day Bed-Side Manner 101 was taught. You're doing

a great job , don't get discouraged now. Put this appointment

and all the assinine things said to you behind as best you can.

Hopefully you'll be able to get somewhere tomorrow with your ped. Be

sure to let us know.

As far as these clear bands go, Orthomerica manufactures 5 different

cranial molding devices, including the STARband. Three of these

devices (STARlight, Side-Opening Band; STARlight, Bi-Valved, and the

STARlight, Cap) are all made with a clear plastic shell. You can

check out the different designs at

http://orthomerica.com/products/cranial/cranialindex

Anyway, again, I am very sorry that you had such a horrible

experience. It can only get better from here!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc band

people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering, he

says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at age

5-6, ocular problems, and a host of other problems with big sounding

words. He even goes on to say that other kids will pic on his and

when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy

said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello, look

at Hannah's pics. Damn---wish I could show him. He says---no, they

cast the helmet directly to the head and that is the shape. I try to

explain that the orthotist shaves some away but it is worthless at

this point. He is now onto saying if you know what you want, why did

you come and how can you debate this with someone who specializes in

this field, etc... By this time I am friggin bawling my brains out

due to anger and confusion and the fact that I can kiss my script

goodbye. See ya Starband. This guy ain't gonna do it. And I'm

now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids

forehead is filled with fluid and his brain is getting squished and

that I need to do the 2D-3D CT Scan so we can see the fluid. His tx.

approach is to put my son on his stomach at bedtime---forget SIDS---

those kids are dying due to heart defects---and get him on his tummy

as much as possible. Yeah. Incidentally, I just put my son to bed

on his stomach and he screamed and cried and struggled until he

managed to flip right back onto his flat spot. Oh-good. Then---here

is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing

this whole mess start asking me if I drank caffeine during my

pregnancy, during breastfeeding, if I drank alcohol during either

period, if I smoked, what kind of water did I drink? How many sodas

or ice tea in an average week, medications, etc... Apparently they

are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

figure. Then he starts snapping pics of my kid--back and front while

I cry (so very effective). Then some woman comes in the door---which

was open the entire time---and I try one last time to explain to the

doctor that external pressures shaped my kid's head, doesn't it make

sense to put the helmet on and direct some external pressures in the

right places. Well, the unknown and unintroduced woman--is she a

receptionist, who the hell knows---butts in and explains to me that

it wasn't external pressures that did this, it was the weight of my

kids brain. Oh---shut up and someone please airlift me out of here

before I barf. Before leaving I ask the receptionist who that woman

was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so

pissed off I can barely think. I don't understand what the hell all

the confusion and disagreement is about. What is happening with this

disorder? Why are the specialists against banding? Why are they not

up on how the bands actually work? Why do they hate the band

people? And, God, the big question, where are they getting these

creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just who

DOES WRITE THESE SCRIPTS in this awful city? She gave me the name of

yet another neurology specialist. Ugh. But how long to get an

appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than ever,

I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it

is too late to educate him. And just think about all the kids and

parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

Aww heck, I guess it would help if I wrote down the website

properly! Sorry, forgot to add the .htm at the end of the link, so

let's try this again!

http://orthomerica.com/products/cranial/cranialindex.htm

Niki

> > I feel sick to my stomach as I write this...Today we had an appt.

> with a second cranio-facial plastic surgeon in our city. I got his

> name from my pediatrician and from the plagiocephaly web site and

> from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

> review the appt. with the first cranio-facial surgeon: nice guy,

> basically adhered to the " round out by itself " philosophy, wasn't

up

> on the in's and out's of the helmets. He thought the helmet/doc

band

> people were " aggressive " and said there were no good studies to

> indicate that kids not banded don't do just as well without. He

had

> an archaic looking clear helmet as an example of a helmet. Didn't

> have any idea who makes helmets in the area, etc...

> >

> > Okay, now today's visit with a guy who is supposed to be up on

the

> issues regarding plagio. First off, he examines my 6 month old and

> pronounces him as NOT having torticollis. I said " well, gee, why

> does his head tilt like that? " His response, " it's because of his

> head. " Well, what the hell does that mean? Instead of answering,

he

> says that he can tell he does not have tort because the two SCM

> muscles are soft and there is no lump. I say that my research

> indicates that the lump is usually gone by 4 mos. Well, he doesn't

> know about that. Funny, just went to Shriners last week and the

> chief doc there examined my son and told me that the torticollis is

> his most pressing issue. Gee, and the physical therapist has been

> taping him and he says he has tort, and the ped says he has

> tort...oh, I digress. Onto the plagio discussion. He says my son

> has severe plagio. Now, I have not heard that from anyone else. I

> think he is moderate and probably could benefit from a band. [His

> pics are listed under B.] Nope, this guy says he is

severe

> and if I don't get going on treatment and get this resolved by the

> time he is two, that he is going to have learning disabilities at

age

> 5-6, ocular problems, and a host of other problems with big

sounding

> words. He even goes on to say that other kids will pic on his and

> when he is 16 he will come crying to me that he can't get a date

> because his head and face are so odd looking. I do not lie---the

guy

> said these things. I said that I want to band. He says

> definitively that they do not work. So, we get into this debate

and

> I tell him about the people on this board and the results they

get.

> God---wish I had pictures of Hannah with me. He says it all boils

> down to statistics and people can tell you anything they want on

the

> internet. I explain that these are parents, not reps of the

> companies---who, according to him are all out for money. Oh---and

> get this, he does presentations for insurance companies explaining

> how these companies are crap and the product is crap and that they

> shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from

the

> parents who are having improvements, not those who don't see any

> change and statistically, that proves nothing. Now---here is the

> great part...he goes into his office to show me an example of the

> helmet and... low and behold it is the same archaic looking clear

> helmet that the first guy had except this one has inflatable bag

> inserts. Like who the hell is using that these days? So, we

debate

> the helmet again and he says-- " What, is your kid going to wear the

> helmet to sleep? " Like DUH---yes, of course he is going to wear it

> to sleep. This seemed like news to him. Then, he totally

disagreed

> that there is any space in the helmet for growth---again, hello,

look

> at Hannah's pics. Damn---wish I could show him. He says---no,

they

> cast the helmet directly to the head and that is the shape. I try

to

> explain that the orthotist shaves some away but it is worthless at

> this point. He is now onto saying if you know what you want, why

did

> you come and how can you debate this with someone who specializes

in

> this field, etc... By this time I am friggin bawling my brains out

> due to anger and confusion and the fact that I can kiss my script

> goodbye. See ya Starband. This guy ain't gonna do it. And I'm

> now thinking about the severity my son's head and his future in

> special ed. Then he goes on to telling me (scaring me) that my

kids

> forehead is filled with fluid and his brain is getting squished and

> that I need to do the 2D-3D CT Scan so we can see the fluid. His

tx.

> approach is to put my son on his stomach at bedtime---forget SIDS---

> those kids are dying due to heart defects---and get him on his

tummy

> as much as possible. Yeah. Incidentally, I just put my son to bed

> on his stomach and he screamed and cried and struggled until he

> managed to flip right back onto his flat spot. Oh-good. Then---

here

> is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

> tells me he is doing a study on plagio (incidentally he sees 25

kids

> a week with this) and he has a med student who has been observing

> this whole mess start asking me if I drank caffeine during my

> pregnancy, during breastfeeding, if I drank alcohol during either

> period, if I smoked, what kind of water did I drink? How many

sodas

> or ice tea in an average week, medications, etc... Apparently they

> are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

> figure. Then he starts snapping pics of my kid--back and front

while

> I cry (so very effective). Then some woman comes in the door---

which

> was open the entire time---and I try one last time to explain to

the

> doctor that external pressures shaped my kid's head, doesn't it

make

> sense to put the helmet on and direct some external pressures in

the

> right places. Well, the unknown and unintroduced woman--is she a

> receptionist, who the hell knows---butts in and explains to me that

> it wasn't external pressures that did this, it was the weight of my

> kids brain. Oh---shut up and someone please airlift me out of here

> before I barf. Before leaving I ask the receptionist who that

woman

> was and she turns out to be a speech therapist.

> >

> > So I don't know if this is in the cards for me and my son. I am

so

> pissed off I can barely think. I don't understand what the hell

all

> the confusion and disagreement is about. What is happening with

this

> disorder? Why are the specialists against banding? Why are they

not

> up on how the bands actually work? Why do they hate the band

> people? And, God, the big question, where are they getting these

> creepy clear bands from?

> >

> > So---I'm not finished with this yet. This is my kid and I'm

going

> to go the x-tra mile. I called the Starband rep to find out just

who

> DOES WRITE THESE SCRIPTS in this awful city? She gave me the name

of

> yet another neurology specialist. Ugh. But how long to get an

> appt? Tomorrow I am going to try and get in with my ped. and

> advocate for the script and the letter of medical necessity. I

have

> three examples from this board to help him write it. More than

ever,

> I want to prove this specialist wrong. I would love to go in and

see

> him in 4 mos and show him my son's round head. Honestly, I think

it

> is too late to educate him. And just think about all the kids and

> parents he sees each week.

> > What a m_th_r f_cker.

> >

> > Hope the rest of you are having a better time at this than us.

> Sorry for all the obscenities. It's just where I am this evening.

> >

> >

> > Tampa, FL

[Guest guest]

,

I'm soooo sorry you've had to so very awful visits. Keep trying.

Luckily your son is still pretty young. Feel free to print out

Hannah's pictures for that next appointment of yours. It's pretty

sad when we go in to a specialist with more education on plagio than

they have. When I went in to the neurosurgeon I wanted to ask him

about the different types of bands and what he recommends. He told

me that NOPCO (downstairs in the hospital) used DOCbands which I

knew was bull b/c I'd already talked to them about their STARBANDS!

We go back to him tomorrow, yipee. I told him to write me the

script saying " molding helmet " and knew I could take it anywhere

only from this group. That way I was free to do my own research on

the companies since he knew nothing! I'm very thankful that he

measured her and gave us the script though and also wrote us a

pretty good letter of med necessity. Good luck with everything.

Your ped won't write the script for you even now that he's been dx

with severe plagio?

, mom to Hannah DOCbanded 5/12

Cape Cod, Ma

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc

band people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering,

he says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at

age 5-6, ocular problems, and a host of other problems with big

sounding words. He even goes on to say that other kids will pic on

his and when he is 16 he will come crying to me that he can't get a

date because his head and face are so odd looking. I do not lie---

the guy said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello,

look at Hannah's pics. Damn---wish I could show him. He says---no,

they cast the helmet directly to the head and that is the shape. I

try to explain that the orthotist shaves some away but it is

worthless at this point. He is now onto saying if you know what you

want, why did you come and how can you debate this with someone who

specializes in this field, etc... By this time I am friggin bawling

my brains out due to anger and confusion and the fact that I can

kiss my script goodbye. See ya Starband. This guy ain't gonna do

it. And I'm now thinking about the severity my son's head and his

future in special ed. Then he goes on to telling me (scaring me)

that my kids forehead is filled with fluid and his brain is getting

squished and that I need to do the 2D-3D CT Scan so we can see the

fluid. His tx. approach is to put my son on his stomach at bedtime---

forget SIDS---those kids are dying due to heart defects---and get

him on his tummy as much as possible. Yeah. Incidentally, I just

put my son to bed on his stomach and he screamed and cried and

struggled until he managed to flip right back onto his flat spot.

Oh-good. Then---here is just the cherry on top and just REALLY

TURNS THE OLE KNIFE. He tells me he is doing a study on plagio

(incidentally he sees 25 kids a week with this) and he has a med

student who has been observing this whole mess start asking me if I

drank caffeine during my pregnancy, during breastfeeding, if I drank

alcohol during either period, if I smoked, what kind of water did I

drink? How many sodas or ice tea in an average week, medications,

etc... Apparently they are looking to blame this (plagiocephaly) on

Mom. Go f_c_ing figure. Then he starts snapping pics of my kid--

back and front while I cry (so very effective). Then some woman

comes in the door---which was open the entire time---and I try one

last time to explain to the doctor that external pressures shaped my

kid's head, doesn't it make sense to put the helmet on and direct

some external pressures in the right places. Well, the unknown and

unintroduced woman--is she a receptionist, who the hell knows---

butts in and explains to me that it wasn't external pressures that

did this, it was the weight of my kids brain. Oh---shut up and

someone please airlift me out of here before I barf. Before

leaving I ask the receptionist who that woman was and she turns out

to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am

so pissed off I can barely think. I don't understand what the hell

all the confusion and disagreement is about. What is happening with

this disorder? Why are the specialists against banding? Why are

they not up on how the bands actually work? Why do they hate the

band people? And, God, the big question, where are they getting

these creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just

who DOES WRITE THESE SCRIPTS in this awful city? She gave me the

name of yet another neurology specialist. Ugh. But how long to get

an appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than

ever, I want to prove this specialist wrong. I would love to go in

and see him in 4 mos and show him my son's round head. Honestly, I

think it is too late to educate him. And just think about all the

kids and parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

This sounds so frustrating for you! I can totally relate to you

being in tears because you are mad and frustrated, it's hard because

you accomplish nothing! Good luck and I hope you find someone that

is much better at what they do than this guy!

Jocelyn & Kirsten banded 2/21/03

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc band

people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering, he

says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at age

5-6, ocular problems, and a host of other problems with big sounding

words. He even goes on to say that other kids will pic on his and

when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy

said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello, look

at Hannah's pics. Damn---wish I could show him. He says---no, they

cast the helmet directly to the head and that is the shape. I try to

explain that the orthotist shaves some away but it is worthless at

this point. He is now onto saying if you know what you want, why did

you come and how can you debate this with someone who specializes in

this field, etc... By this time I am friggin bawling my brains out

due to anger and confusion and the fact that I can kiss my script

goodbye. See ya Starband. This guy ain't gonna do it. And I'm

now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids

forehead is filled with fluid and his brain is getting squished and

that I need to do the 2D-3D CT Scan so we can see the fluid. His tx.

approach is to put my son on his stomach at bedtime---forget SIDS---

those kids are dying due to heart defects---and get him on his tummy

as much as possible. Yeah. Incidentally, I just put my son to bed

on his stomach and he screamed and cried and struggled until he

managed to flip right back onto his flat spot. Oh-good. Then---here

is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing

this whole mess start asking me if I drank caffeine during my

pregnancy, during breastfeeding, if I drank alcohol during either

period, if I smoked, what kind of water did I drink? How many sodas

or ice tea in an average week, medications, etc... Apparently they

are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

figure. Then he starts snapping pics of my kid--back and front while

I cry (so very effective). Then some woman comes in the door---which

was open the entire time---and I try one last time to explain to the

doctor that external pressures shaped my kid's head, doesn't it make

sense to put the helmet on and direct some external pressures in the

right places. Well, the unknown and unintroduced woman--is she a

receptionist, who the hell knows---butts in and explains to me that

it wasn't external pressures that did this, it was the weight of my

kids brain. Oh---shut up and someone please airlift me out of here

before I barf. Before leaving I ask the receptionist who that woman

was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so

pissed off I can barely think. I don't understand what the hell all

the confusion and disagreement is about. What is happening with this

disorder? Why are the specialists against banding? Why are they not

up on how the bands actually work? Why do they hate the band

people? And, God, the big question, where are they getting these

creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just who

DOES WRITE THESE SCRIPTS in this awful city? She gave me the name of

yet another neurology specialist. Ugh. But how long to get an

appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than ever,

I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it

is too late to educate him. And just think about all the kids and

parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

,

I find it so offensive that this specialist tried to humiliate and

terrify you, all the while suffering from some sort of " god

complex. " He is in total denial of the facts... lord if I had to

put up with some sort of sycophant, speech therapist popping in with

kernals of wisdom, I don't know what I would do!!! I can't believe

he had some med student groupie sitting in there, taking survey

notes!!! Always has to have a captive audience, probably. I bet no

one can stand his egotistical *** at that office.

All I have to say is, you survived this horrific office visit, which

says a lot about your dedication to your son!! I don't think

anything is going to stand in the way of your getting the treatment

you need.

Christie (Mom to Remy)

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc

band people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering,

he says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at

age 5-6, ocular problems, and a host of other problems with big

sounding words. He even goes on to say that other kids will pic on

his and when he is 16 he will come crying to me that he can't get a

date because his head and face are so odd looking. I do not lie---

the guy said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello,

look at Hannah's pics. Damn---wish I could show him. He says---no,

they cast the helmet directly to the head and that is the shape. I

try to explain that the orthotist shaves some away but it is

worthless at this point. He is now onto saying if you know what you

want, why did you come and how can you debate this with someone who

specializes in this field, etc... By this time I am friggin bawling

my brains out due to anger and confusion and the fact that I can

kiss my script goodbye. See ya Starband. This guy ain't gonna do

it. And I'm now thinking about the severity my son's head and his

future in special ed. Then he goes on to telling me (scaring me)

that my kids forehead is filled with fluid and his brain is getting

squished and that I need to do the 2D-3D CT Scan so we can see the

fluid. His tx. approach is to put my son on his stomach at bedtime---

forget SIDS---those kids are dying due to heart defects---and get

him on his tummy as much as possible. Yeah. Incidentally, I just

put my son to bed on his stomach and he screamed and cried and

struggled until he managed to flip right back onto his flat spot.

Oh-good. Then---here is just the cherry on top and just REALLY

TURNS THE OLE KNIFE. He tells me he is doing a study on plagio

(incidentally he sees 25 kids a week with this) and he has a med

student who has been observing this whole mess start asking me if I

drank caffeine during my pregnancy, during breastfeeding, if I drank

alcohol during either period, if I smoked, what kind of water did I

drink? How many sodas or ice tea in an average week, medications,

etc... Apparently they are looking to blame this (plagiocephaly) on

Mom. Go f_c_ing figure. Then he starts snapping pics of my kid--

back and front while I cry (so very effective). Then some woman

comes in the door---which was open the entire time---and I try one

last time to explain to the doctor that external pressures shaped my

kid's head, doesn't it make sense to put the helmet on and direct

some external pressures in the right places. Well, the unknown and

unintroduced woman--is she a receptionist, who the hell knows---

butts in and explains to me that it wasn't external pressures that

did this, it was the weight of my kids brain. Oh---shut up and

someone please airlift me out of here before I barf. Before

leaving I ask the receptionist who that woman was and she turns out

to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am

so pissed off I can barely think. I don't understand what the hell

all the confusion and disagreement is about. What is happening with

this disorder? Why are the specialists against banding? Why are

they not up on how the bands actually work? Why do they hate the

band people? And, God, the big question, where are they getting

these creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just

who DOES WRITE THESE SCRIPTS in this awful city? She gave me the

name of yet another neurology specialist. Ugh. But how long to get

an appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than

ever, I want to prove this specialist wrong. I would love to go in

and see him in 4 mos and show him my son's round head. Honestly, I

think it is too late to educate him. And just think about all the

kids and parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

,

I just want to hug you. I don't think I would have survived such an

appt. I am so happy that even after all that you are going to pursue

finding someone to give you a script for a band.

I really didn't realize how difficult it was to get a script. We got

's so easily and quickly, it was only after coming here that I

realized how many narrow minded and uniformed doctors there were.

Hang in there you guys will be banded and on to rounding in no time!!

& (15 months, STARband Grad)

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc band

people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering, he

says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at age

5-6, ocular problems, and a host of other problems with big sounding

words. He even goes on to say that other kids will pic on his and

when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy

said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello, look

at Hannah's pics. Damn---wish I could show him. He says---no, they

cast the helmet directly to the head and that is the shape. I try to

explain that the orthotist shaves some away but it is worthless at

this point. He is now onto saying if you know what you want, why did

you come and how can you debate this with someone who specializes in

this field, etc... By this time I am friggin bawling my brains out

due to anger and confusion and the fact that I can kiss my script

goodbye. See ya Starband. This guy ain't gonna do it. And I'm

now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids

forehead is filled with fluid and his brain is getting squished and

that I need to do the 2D-3D CT Scan so we can see the fluid. His tx.

approach is to put my son on his stomach at bedtime---forget SIDS---

those kids are dying due to heart defects---and get him on his tummy

as much as possible. Yeah. Incidentally, I just put my son to bed

on his stomach and he screamed and cried and struggled until he

managed to flip right back onto his flat spot. Oh-good. Then---here

is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing

this whole mess start asking me if I drank caffeine during my

pregnancy, during breastfeeding, if I drank alcohol during either

period, if I smoked, what kind of water did I drink? How many sodas

or ice tea in an average week, medications, etc... Apparently they

are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

figure. Then he starts snapping pics of my kid--back and front while

I cry (so very effective). Then some woman comes in the door---which

was open the entire time---and I try one last time to explain to the

doctor that external pressures shaped my kid's head, doesn't it make

sense to put the helmet on and direct some external pressures in the

right places. Well, the unknown and unintroduced woman--is she a

receptionist, who the hell knows---butts in and explains to me that

it wasn't external pressures that did this, it was the weight of my

kids brain. Oh---shut up and someone please airlift me out of here

before I barf. Before leaving I ask the receptionist who that woman

was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so

pissed off I can barely think. I don't understand what the hell all

the confusion and disagreement is about. What is happening with this

disorder? Why are the specialists against banding? Why are they not

up on how the bands actually work? Why do they hate the band

people? And, God, the big question, where are they getting these

creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just who

DOES WRITE THESE SCRIPTS in this awful city? She gave me the name of

yet another neurology specialist. Ugh. But how long to get an

appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than ever,

I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it

is too late to educate him. And just think about all the kids and

parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

Oh, ,I am so sorry! What an a--hole! It makes you wonder where

they get their diplomas from and how many kids go in and see him and

never get treated. You need to go see this other doctor that

Starband recommended and if this doctor doesn't know anything either,

than find someone else until you are satisfied. In our case, my

insurance wasn't going to pay for it and I had already made up my

mind that whatever cost, I was going to pay it to have my child's

head normal. Do what you have to for your child even if it means

going to every doctor in Florida. Good luck!

Mackenzie 8-24-02

Started Treatment 4-17-03

[Guest guest]

WOW!!!! What an awful day! I think you controlled yourself

way better than I would have. I see you have rec'd quite a few posts

and I want just want to wish you luck. Please keep us updated on how

your making out. Your doing a great job mom.

Dustie

--- In Plagiocephaly , " B. " <wbilling@t...>

wrote:

> I feel sick to my stomach as I write this...Today we had an appt.

with a second cranio-facial plastic surgeon in our city. I got his

name from my pediatrician and from the plagiocephaly web site and

from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

review the appt. with the first cranio-facial surgeon: nice guy,

basically adhered to the " round out by itself " philosophy, wasn't up

on the in's and out's of the helmets. He thought the helmet/doc band

people were " aggressive " and said there were no good studies to

indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't

have any idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the

issues regarding plagio. First off, he examines my 6 month old and

pronounces him as NOT having torticollis. I said " well, gee, why

does his head tilt like that? " His response, " it's because of his

head. " Well, what the hell does that mean? Instead of answering, he

says that he can tell he does not have tort because the two SCM

muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't

know about that. Funny, just went to Shriners last week and the

chief doc there examined my son and told me that the torticollis is

his most pressing issue. Gee, and the physical therapist has been

taping him and he says he has tort, and the ped says he has

tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I

think he is moderate and probably could benefit from a band. [His

pics are listed under B.] Nope, this guy says he is severe

and if I don't get going on treatment and get this resolved by the

time he is two, that he is going to have learning disabilities at age

5-6, ocular problems, and a host of other problems with big sounding

words. He even goes on to say that other kids will pic on his and

when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy

said these things. I said that I want to band. He says

definitively that they do not work. So, we get into this debate and

I tell him about the people on this board and the results they get.

God---wish I had pictures of Hannah with me. He says it all boils

down to statistics and people can tell you anything they want on the

internet. I explain that these are parents, not reps of the

companies---who, according to him are all out for money. Oh---and

get this, he does presentations for insurance companies explaining

how these companies are crap and the product is crap and that they

shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from the

parents who are having improvements, not those who don't see any

change and statistically, that proves nothing. Now---here is the

great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear

helmet that the first guy had except this one has inflatable bag

inserts. Like who the hell is using that these days? So, we debate

the helmet again and he says-- " What, is your kid going to wear the

helmet to sleep? " Like DUH---yes, of course he is going to wear it

to sleep. This seemed like news to him. Then, he totally disagreed

that there is any space in the helmet for growth---again, hello, look

at Hannah's pics. Damn---wish I could show him. He says---no, they

cast the helmet directly to the head and that is the shape. I try to

explain that the orthotist shaves some away but it is worthless at

this point. He is now onto saying if you know what you want, why did

you come and how can you debate this with someone who specializes in

this field, etc... By this time I am friggin bawling my brains out

due to anger and confusion and the fact that I can kiss my script

goodbye. See ya Starband. This guy ain't gonna do it. And I'm

now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids

forehead is filled with fluid and his brain is getting squished and

that I need to do the 2D-3D CT Scan so we can see the fluid. His tx.

approach is to put my son on his stomach at bedtime---forget SIDS---

those kids are dying due to heart defects---and get him on his tummy

as much as possible. Yeah. Incidentally, I just put my son to bed

on his stomach and he screamed and cried and struggled until he

managed to flip right back onto his flat spot. Oh-good. Then---here

is just the cherry on top and just REALLY TURNS THE OLE KNIFE. He

tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing

this whole mess start asking me if I drank caffeine during my

pregnancy, during breastfeeding, if I drank alcohol during either

period, if I smoked, what kind of water did I drink? How many sodas

or ice tea in an average week, medications, etc... Apparently they

are looking to blame this (plagiocephaly) on Mom. Go f_c_ing

figure. Then he starts snapping pics of my kid--back and front while

I cry (so very effective). Then some woman comes in the door---which

was open the entire time---and I try one last time to explain to the

doctor that external pressures shaped my kid's head, doesn't it make

sense to put the helmet on and direct some external pressures in the

right places. Well, the unknown and unintroduced woman--is she a

receptionist, who the hell knows---butts in and explains to me that

it wasn't external pressures that did this, it was the weight of my

kids brain. Oh---shut up and someone please airlift me out of here

before I barf. Before leaving I ask the receptionist who that woman

was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so

pissed off I can barely think. I don't understand what the hell all

the confusion and disagreement is about. What is happening with this

disorder? Why are the specialists against banding? Why are they not

up on how the bands actually work? Why do they hate the band

people? And, God, the big question, where are they getting these

creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going

to go the x-tra mile. I called the Starband rep to find out just who

DOES WRITE THESE SCRIPTS in this awful city? She gave me the name of

yet another neurology specialist. Ugh. But how long to get an

appt? Tomorrow I am going to try and get in with my ped. and

advocate for the script and the letter of medical necessity. I have

three examples from this board to help him write it. More than ever,

I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it

is too late to educate him. And just think about all the kids and

parents he sees each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us.

Sorry for all the obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

,

I am beyond sorry about your horrible experience with the specialist from hell.

What a complete and total idiot. You did all you could to make your point and

get somewhere with that big goober. If you could somehow convince your ped

to write the RX that would probably be the way you should go, otherwise try to

get in with the new doc as soon as possible. Make an appointment and then

get on the cancellation waiting list.

BTW - my daughter wore a completely clear plastic molding helmet that

worked really well for her. They are different from the bands for sure, but very

effective if made and monitored by an outstanding orthotist. Still, the air

bladder thing would have freaked me out - ours didn't have anything like that.

I've heard of another member in the group using that device, but I can't

remember what the opinion of that product was.

I sure am sorry that you had to be subjected to such a horrible experience. :-(

Hang in there - everything will work out.

Marci (Mom to )

Oklahoma

> I feel sick to my stomach as I write this...Today we had an appt. with a

second cranio-facial plastic surgeon in our city. I got his name from my

pediatrician and from the plagiocephaly web site and from someone on this

list. IT WAS A HORRIBLE VISIT. First, let me review the appt. with the first

cranio-facial surgeon: nice guy, basically adhered to the " round out by itself "

philosophy, wasn't up on the in's and out's of the helmets. He thought the

helmet/doc band people were " aggressive " and said there were no good

studies to indicate that kids not banded don't do just as well without. He had

an archaic looking clear helmet as an example of a helmet. Didn't have any

idea who makes helmets in the area, etc...

>

> Okay, now today's visit with a guy who is supposed to be up on the issues

regarding plagio. First off, he examines my 6 month old and pronounces him

as NOT having torticollis. I said " well, gee, why does his head tilt like

that? "

His response, " it's because of his head. " Well, what the hell does that mean?

Instead of answering, he says that he can tell he does not have tort because

the two SCM muscles are soft and there is no lump. I say that my research

indicates that the lump is usually gone by 4 mos. Well, he doesn't know about

that. Funny, just went to Shriners last week and the chief doc there examined

my son and told me that the torticollis is his most pressing issue. Gee, and

the

physical therapist has been taping him and he says he has tort, and the ped

says he has tort...oh, I digress. Onto the plagio discussion. He says my son

has severe plagio. Now, I have not heard that from anyone else. I think he is

moderate and probably could benefit from a band. [His pics are listed under

B.] Nope, this guy says he is severe and if I don't get going on

treatment and get this resolved by the time he is two, that he is going to have

learning disabilities at age 5-6, ocular problems, and a host of other problems

with big sounding words. He even goes on to say that other kids will pic on

his and when he is 16 he will come crying to me that he can't get a date

because his head and face are so odd looking. I do not lie---the guy said

these things. I said that I want to band. He says definitively that they do

not

work. So, we get into this debate and I tell him about the people on this board

and the results they get. God---wish I had pictures of Hannah with me. He

says it all boils down to statistics and people can tell you anything they want

on the internet. I explain that these are parents, not reps of the companies---

who, according to him are all out for money. Oh---and get this, he does

presentations for insurance companies explaining how these companies are

crap and the product is crap and that they shouldn't pay. Ahhhhhh. Anyway--

-he says I'm only hearing from the parents who are having improvements, not

those who don't see any change and statistically, that proves nothing. Now---

here is the great part...he goes into his office to show me an example of the

helmet and... low and behold it is the same archaic looking clear helmet that

the first guy had except this one has inflatable bag inserts. Like who the hell

is using that these days? So, we debate the helmet again and he says--

" What, is your kid going to wear the helmet to sleep? " Like DUH---yes, of

course he is going to wear it to sleep. This seemed like news to him. Then,

he totally disagreed that there is any space in the helmet for growth---again,

hello, look at Hannah's pics. Damn---wish I could show him. He says---no,

they cast the helmet directly to the head and that is the shape. I try to

explain

that the orthotist shaves some away but it is worthless at this point. He is

now

onto saying if you know what you want, why did you come and how can you

debate this with someone who specializes in this field, etc... By this time I

am

friggin bawling my brains out due to anger and confusion and the fact that I

can kiss my script goodbye. See ya Starband. This guy ain't gonna do it.

And I'm now thinking about the severity my son's head and his future in

special ed. Then he goes on to telling me (scaring me) that my kids forehead

is filled with fluid and his brain is getting squished and that I need to do the

2D-3D CT Scan so we can see the fluid. His tx. approach is to put my son on

his stomach at bedtime---forget SIDS---those kids are dying due to heart

defects---and get him on his tummy as much as possible. Yeah. Incidentally,

I just put my son to bed on his stomach and he screamed and cried and

struggled until he managed to flip right back onto his flat spot. Oh-good.

Then---here is just the cherry on top and just REALLY TURNS THE OLE

KNIFE. He tells me he is doing a study on plagio (incidentally he sees 25 kids

a week with this) and he has a med student who has been observing this

whole mess start asking me if I drank caffeine during my pregnancy, during

breastfeeding, if I drank alcohol during either period, if I smoked, what kind

of

water did I drink? How many sodas or ice tea in an average week,

medications, etc... Apparently they are looking to blame this (plagiocephaly)

on Mom. Go f_c_ing figure. Then he starts snapping pics of my kid--back and

front while I cry (so very effective). Then some woman comes in the door---

which was open the entire time---and I try one last time to explain to the

doctor

that external pressures shaped my kid's head, doesn't it make sense to put the

helmet on and direct some external pressures in the right places. Well, the

unknown and unintroduced woman--is she a receptionist, who the hell

knows---butts in and explains to me that it wasn't external pressures that did

this, it was the weight of my kids brain. Oh---shut up and someone please

airlift me out of here before I barf. Before leaving I ask the receptionist

who

that woman was and she turns out to be a speech therapist.

>

> So I don't know if this is in the cards for me and my son. I am so pissed off

I

can barely think. I don't understand what the hell all the confusion and

disagreement is about. What is happening with this disorder? Why are the

specialists against banding? Why are they not up on how the bands actually

work? Why do they hate the band people? And, God, the big question,

where are they getting these creepy clear bands from?

>

> So---I'm not finished with this yet. This is my kid and I'm going to go the

x-tra

mile. I called the Starband rep to find out just who DOES WRITE THESE

SCRIPTS in this awful city? She gave me the name of yet another neurology

specialist. Ugh. But how long to get an appt? Tomorrow I am going to try and

get in with my ped. and advocate for the script and the letter of medical

necessity. I have three examples from this board to help him write it. More

than ever, I want to prove this specialist wrong. I would love to go in and see

him in 4 mos and show him my son's round head. Honestly, I think it is too

late to educate him. And just think about all the kids and parents he sees

each week.

> What a m_th_r f_cker.

>

> Hope the rest of you are having a better time at this than us. Sorry for all

the

obscenities. It's just where I am this evening.

>

>

> Tampa, FL

[Guest guest]

,

I am so sorry for your horrible experience. Sometimes medical

professionals are real a--holes. They think that they are all

knowing. It is a real shame that he is getting his facts all

misconstrued. Are you going through with a CT scan?? What was he

basing his theory about fluid on? It sounds as though you will stick

to your guns. Hold out for someone who understands you and has his

facts straight. Goodluck and keep us posted!

Cheryl

mom to Cody

STARbanded 4/02/03-6/20/03

waiting for the DOCband

> > I feel sick to my stomach as I write this...Today we had an appt.

> with a second cranio-facial plastic surgeon in our city. I got his

> name from my pediatrician and from the plagiocephaly web site and

> from someone on this list. IT WAS A HORRIBLE VISIT. First, let me

> review the appt. with the first cranio-facial surgeon: nice guy,

> basically adhered to the " round out by itself " philosophy, wasn't

up

> on the in's and out's of the helmets. He thought the helmet/doc

> band people were " aggressive " and said there were no good studies

to

> indicate that kids not banded don't do just as well without. He

had

> an archaic looking clear helmet as an example of a helmet. Didn't

> have any idea who makes helmets in the area, etc...

> >

> > Okay, now today's visit with a guy who is supposed to be up on

the

> issues regarding plagio. First off, he examines my 6 month old and

> pronounces him as NOT having torticollis. I said " well, gee, why

> does his head tilt like that? " His response, " it's because of his

> head. " Well, what the hell does that mean? Instead of answering,

> he says that he can tell he does not have tort because the two SCM

> muscles are soft and there is no lump. I say that my research

> indicates that the lump is usually gone by 4 mos. Well, he doesn't

> know about that. Funny, just went to Shriners last week and the

> chief doc there examined my son and told me that the torticollis is

> his most pressing issue. Gee, and the physical therapist has been

> taping him and he says he has tort, and the ped says he has

> tort...oh, I digress. Onto the plagio discussion. He says my son

> has severe plagio. Now, I have not heard that from anyone else. I

> think he is moderate and probably could benefit from a band. [His

> pics are listed under B.] Nope, this guy says he is

severe

> and if I don't get going on treatment and get this resolved by the

> time he is two, that he is going to have learning disabilities at

> age 5-6, ocular problems, and a host of other problems with big

> sounding words. He even goes on to say that other kids will pic on

> his and when he is 16 he will come crying to me that he can't get a

> date because his head and face are so odd looking. I do not lie---

> the guy said these things. I said that I want to band. He says

> definitively that they do not work. So, we get into this debate

and

> I tell him about the people on this board and the results they

get.

> God---wish I had pictures of Hannah with me. He says it all boils

> down to statistics and people can tell you anything they want on

the

> internet. I explain that these are parents, not reps of the

> companies---who, according to him are all out for money. Oh---and

> get this, he does presentations for insurance companies explaining

> how these companies are crap and the product is crap and that they

> shouldn't pay. Ahhhhhh. Anyway---he says I'm only hearing from

the

> parents who are having improvements, not those who don't see any

> change and statistically, that proves nothing. Now---here is the

> great part...he goes into his office to show me an example of the

> helmet and... low and behold it is the same archaic looking clear

> helmet that the first guy had except this one has inflatable bag

> inserts. Like who the hell is using that these days? So, we

debate

> the helmet again and he says-- " What, is your kid going to wear the

> helmet to sleep? " Like DUH---yes, of course he is going to wear it

> to sleep. This seemed like news to him. Then, he totally

disagreed

> that there is any space in the helmet for growth---again, hello,

> look at Hannah's pics. Damn---wish I could show him. He says---

no,

> they cast the helmet directly to the head and that is the shape. I

> try to explain that the orthotist shaves some away but it is

> worthless at this point. He is now onto saying if you know what

you

> want, why did you come and how can you debate this with someone who

> specializes in this field, etc... By this time I am friggin

bawling

> my brains out due to anger and confusion and the fact that I can

> kiss my script goodbye. See ya Starband. This guy ain't gonna do

> it. And I'm now thinking about the severity my son's head and his

> future in special ed. Then he goes on to telling me (scaring me)

> that my kids forehead is filled with fluid and his brain is getting

> squished and that I need to do the 2D-3D CT Scan so we can see the

> fluid. His tx. approach is to put my son on his stomach at bedtime--

-

> forget SIDS---those kids are dying due to heart defects---and get

> him on his tummy as much as possible. Yeah. Incidentally, I just

> put my son to bed on his stomach and he screamed and cried and

> struggled until he managed to flip right back onto his flat spot.

> Oh-good. Then---here is just the cherry on top and just REALLY

> TURNS THE OLE KNIFE. He tells me he is doing a study on plagio

> (incidentally he sees 25 kids a week with this) and he has a med

> student who has been observing this whole mess start asking me if I

> drank caffeine during my pregnancy, during breastfeeding, if I

drank

> alcohol during either period, if I smoked, what kind of water did I

> drink? How many sodas or ice tea in an average week, medications,

> etc... Apparently they are looking to blame this (plagiocephaly)

on

> Mom. Go f_c_ing figure. Then he starts snapping pics of my kid--

> back and front while I cry (so very effective). Then some woman

> comes in the door---which was open the entire time---and I try one

> last time to explain to the doctor that external pressures shaped

my

> kid's head, doesn't it make sense to put the helmet on and direct

> some external pressures in the right places. Well, the unknown and

> unintroduced woman--is she a receptionist, who the hell knows---

> butts in and explains to me that it wasn't external pressures that

> did this, it was the weight of my kids brain. Oh---shut up and

> someone please airlift me out of here before I barf. Before

> leaving I ask the receptionist who that woman was and she turns out

> to be a speech therapist.

> >

> > So I don't know if this is in the cards for me and my son. I am

> so pissed off I can barely think. I don't understand what the

hell

> all the confusion and disagreement is about. What is happening

with

> this disorder? Why are the specialists against banding? Why are

> they not up on how the bands actually work? Why do they hate the

> band people? And, God, the big question, where are they getting

> these creepy clear bands from?

> >

> > So---I'm not finished with this yet. This is my kid and I'm

going

> to go the x-tra mile. I called the Starband rep to find out just

> who DOES WRITE THESE SCRIPTS in this awful city? She gave me the

> name of yet another neurology specialist. Ugh. But how long to

get

> an appt? Tomorrow I am going to try and get in with my ped. and

> advocate for the script and the letter of medical necessity. I

have

> three examples from this board to help him write it. More than

> ever, I want to prove this specialist wrong. I would love to go in

> and see him in 4 mos and show him my son's round head. Honestly, I

> think it is too late to educate him. And just think about all the

> kids and parents he sees each week.

> > What a m_th_r f_cker.

> >

> > Hope the rest of you are having a better time at this than us.

> Sorry for all the obscenities. It's just where I am this evening.

> >

> >

> > Tampa, FL