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

July 3, 2003

Go get em' ! I'm in your corner all the way! I'm so sorry that

you had such a rough time with this. When this is all said and done

and your son will have a beautiful round noggin! Hats off to you! I

commend you standing up for yourself. Those #$@% specialists! You

can just let it out here...we're here for you.

Lori and on doc banded 6/23/03

--- 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

July 3, 2003

Oh ! Bless your heart! I would have been a basketcase! I am so sorry that you are going through so much just to get a prescription. I hope your regular ped can just write one for you. Of course if this idiot doctor is advocating immediate treatment then what is it? Just the tummy time? Please keep us posted on your progress.

Natasha" B." <wbilling@...> 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 For more plagio info

July 3, 2003

Wow , I totally HEAR you on this one!!!

You just wrote down what probably 80% of us are thinking but are too

lazy to write down!! Good for you for sticking to your guns.

We were fortunate that our neurosurgeon wrote the script, but he was

weird about it. He had folders from CTI and gave them to me to think

about while we tried repo'ing Collin. When we returned 2 months

later with *some* improvement he proceeds to tell me that Collin is

still considered severe. As far as banding went he says to

me, " ...if it were my kid, and I had to pay the $3,000 out of pocket

for this would I do it? No. The helmet is only going to do what will

happen naturally on its own, but quicker. " So, where did that leave

me? So should we do it or not??? We ended up doing it... At his

first appointment back after being banded, the dr. appeared noticably

enthusiastic about Collin's improvement, so maybe he had changed his

mind about plagio and banding, who the hell knows.

But it really ticks me off to hear the resistance that exists with

peds and specialists. Maybe this new press release coming out next

week will shed some light on these doctors so they can get their

butts in gear and start diagnosing AND treating our kids!

Good luck to you - hang in there and keep with us; we got your back!

Rhonda

Mom to Collin - DOC banded 4/30/03 at 7 months

http://www.geocities.com/imaplagiokid/index.html