had to self diagnose our son...

[Guest guest]

Kristi,

I would kick that ped to the curb but fast!!! If she cannot even open her

mind to learning about plagio, she will never be the professional that she

claims to be. You don't need a referral to go to CT for the free eval.- I

went around my ped when she blew me off at 3 months, and CT told me to

reposition for a month- we did and it didn't help the asymmetry. I simply

told her what I wanted and she wrote out the rx because she was willing to do

whatever to make me happy at that point. I would ask her specifically to

share the information that she has regarding the AAP not recommending helmet

therapy, ask her for backup documentation and I would love to see that one

stammering. Where are you from? Perhaps we can help with other members

letting you know who they have used and so forth. I would start with this

group and see if any Doctor leads can come out of it, but just know that you

can call CT also and I'm sure they can share some info on what Docs are

writing their referrals, etc. Good for you for pressing the issue. I would

really give her a piece of my mind if she's not budging, and tell her to open

her eyes and start doing some homework! I can't believe you even printed the

info and she still can't get it! Good luck and please keep us posted!

' Mom

[Guest guest]

Hi all,

I am new to this group and share the problems and frustrations of

many of you. My pediatrician has been very casual about the whole

flat-headed thing since I first voiced my concerns at a sick visit

when my son was barely 4 months old. He is now 9 months old and the

asymmetry in his face is striking. The doctor continues to shrug it

off and tells me it will round out on its own. She never even

mentioned the word " plagiocephaly " My husband and I had to research

it on the internet ourselves. When I went for the 9 month check up I

brought all the information I had and tried to present it to her.

She was like a brick wall. She insists it will round out on its own,

and if it doesn't, well, " we're all a little asymmetric " UGGHHH. I

am so very frustrated. She also claims that the American Academy of

Pediatrics is recommending against helmet therapy. Does any one know

anything about this? I would rather spend the time and money and be

sure my son looks " normal " than sit back and wait and see. It can't

be corrected later without cutting him open. She hesitantly gave me

a referral to a neurosurgeon, " who is going to tell [us] the same

thing [she] did " A few days later we called an asked her if she

would at least write a letter asking for an evaluation of '

head so that we could take advantage of the free evaluation offered

by the CT clinic near us - she flat out refused. Her first reason

was that she wasn't going to refer us to anyone or anyplace that she

knew nothing about. When my husband offered to send her the info and

give her phone numbers to talk to the physicians there, she still

refused. Anyway, I am rambling and am very confused as to what to

do next. Any suggestions?

Kristi

[Guest guest]

What you are going through is very common to a lot of people in this

group. For my son, I went through two pediatricians who both don't

believe in helmet therapy because the AMA just tells them

repositioning works. Most pediatricians are not knowledgable about

this issue, including mine, and unfortunately a lot of them don't

want to be educated about it. Even after showing my pediatrician the

pictures of 's results with the band, I still don't know if I

have swayed her in any way to help other children with bands. I

don't see the point in switching pediatricians until I find one that

is knowledgable which so far I haven't. I went to the neurosurgeon

my pediatrician referred me to when my son was 6 months. He also did

not believe in banding and said it would round out although he did

say his ears would never align and to grow his hair longer to cover.

With helmet therapy his ears are now only 1mm off. I then found this

site and searched Cranial Technologies website for a physician. I

went to a terrific craniofacial plastic surgeon after I insisted my

pediatrician write the referral. He prescribed the DOCband and I am

very, very happy with the results as you can read from my previous

posts. did two bands and started at 9.5 months. You can see

his results from the first band in the photo section under W.

If your pediatrician refuses to write the referral, I suggest you

switch pediatricians. In my opinion, we must look out for what we

feel is best for our child ourselves. This is just my personal

opinion. FYI: 's facial asymmetry corrected almost 100 percent

with band therapy. Before he started it was pretty severe.

Candy, mom to (DOCband 6/3/02)

land

> Hi all,

>

> I am new to this group and share the problems and frustrations of

> many of you. My pediatrician has been very casual about the whole

> flat-headed thing since I first voiced my concerns at a sick visit

> when my son was barely 4 months old. He is now 9 months old and

the

> asymmetry in his face is striking. The doctor continues to shrug

it

> off and tells me it will round out on its own. She never even

> mentioned the word " plagiocephaly " My husband and I had to

research

> it on the internet ourselves. When I went for the 9 month check up

I

> brought all the information I had and tried to present it to her.

> She was like a brick wall. She insists it will round out on its

own,

> and if it doesn't, well, " we're all a little asymmetric " UGGHHH.

I

> am so very frustrated. She also claims that the American Academy

of

> Pediatrics is recommending against helmet therapy. Does any one

know

> anything about this? I would rather spend the time and money and

be

> sure my son looks " normal " than sit back and wait and see. It

can't

> be corrected later without cutting him open. She hesitantly gave

me

> a referral to a neurosurgeon, " who is going to tell [us] the same

> thing [she] did " A few days later we called an asked her if she

> would at least write a letter asking for an evaluation of '

> head so that we could take advantage of the free evaluation offered

> by the CT clinic near us - she flat out refused. Her first reason

> was that she wasn't going to refer us to anyone or anyplace that

she

> knew nothing about. When my husband offered to send her the info

and

> give her phone numbers to talk to the physicians there, she still

> refused. Anyway, I am rambling and am very confused as to what to

> do next. Any suggestions?

>

> Kristi

[Guest guest]

Kristi,

When I took my daughter to CT for a free consult, my doctor didn't

even know I was going. I don't think you need anything from your ped.

to get an eval. at CT. I struck out with my ped and 2 neurosurgeons.

I then went to CT for an evaluation.My daughter has moderate plagio

with facial asymmetry. Your ped sounds like shes close minded! I

don't mean to offend you but this is the impression I got. CT mailed

my ped. pictures of along with a report. She was very

impressed. She wrote me a script for the DOC band. I get it July 3rd.

will be 11 months by then. I regret listening to my doc and

the ns for so long!Go with your Mommy instinct! I was ready to switch

ped. if mine didn't write me a script. Good Luck!

> Hi all,

>

> I am new to this group and share the problems and frustrations of

> many of you. My pediatrician has been very casual about the whole

> flat-headed thing since I first voiced my concerns at a sick visit

> when my son was barely 4 months old. He is now 9 months old and

the

> asymmetry in his face is striking. The doctor continues to shrug

it

> off and tells me it will round out on its own. She never even

> mentioned the word " plagiocephaly " My husband and I had to

research

> it on the internet ourselves. When I went for the 9 month check up

I

> brought all the information I had and tried to present it to her.

> She was like a brick wall. She insists it will round out on its

own,

> and if it doesn't, well, " we're all a little asymmetric " UGGHHH.

I

> am so very frustrated. She also claims that the American Academy

of

> Pediatrics is recommending against helmet therapy. Does any one

know

> anything about this? I would rather spend the time and money and

be

> sure my son looks " normal " than sit back and wait and see. It

can't

> be corrected later without cutting him open. She hesitantly gave

me

> a referral to a neurosurgeon, " who is going to tell [us] the same

> thing [she] did " A few days later we called an asked her if she

> would at least write a letter asking for an evaluation of '

> head so that we could take advantage of the free evaluation offered

> by the CT clinic near us - she flat out refused. Her first reason

> was that she wasn't going to refer us to anyone or anyplace that

she

> knew nothing about. When my husband offered to send her the info

and

> give her phone numbers to talk to the physicians there, she still

> refused. Anyway, I am rambling and am very confused as to what to

> do next. Any suggestions?

>

> Kristi

[Guest guest]

Kristi,

I agree with Candy in that switching pediatricains might be the best way

to go.

When we first noticed our daughters misshappen head our doctor told me

it would round out by the time she was 4 or 5. I did research as well

and was convinced of plagiocephaly.

We thankfully were referred to a pediatrician for torticollis and he was

the one that diagnosed the plagiocephaly. I'm satisfied with his

approach so far --repositioning for 4 weeks and then recheck. He said

that Paige had a mild case of plagio, but took no measurements and

didn't mention the facial distortions that are possible. Through online

research I found I can now tell that her ears are not symmetrical. If

repositioning over the four weeks doesn't show a marked improvment for

us I will push to get a referral to a specialist.

If the pediatrician does not want to refer then we pack up and find a

pediatrician that will.

Kate

[Guest guest]

Kristi:

Wow, your pediatrician is one of the most stubborn Drs I've heard

about in my 1.5 yrs in this group That really is sad. Have you

considered finding a new pediatrician? One with an open mind at

least?

You mentioned you live near a Cranial TEchnology location..that is

GREAT to hear. I would give them a call, ask to get an evaluation of

's head shape and go from there. Also ask CT for

a " helmet/band " friendlp specialist in your area. I am sure they'll

have at least a couple of specialists they can recommend to you.

Cranial Tech. will give you an honest opinion of 's head shape.

They won't just try to " sell " you their product.

I am really really sorry to hear of the poor treatment and horrible

attitude your ped. has given you & your son. I have not heard of the

AAP recommending against helmets. I don't know why they would. My

daughter graduated from her DOCband one year ago tomorrow w/very good

results, esp. for an older start (11.5 mos old) with severe plagio.

I know w/o the DOCband, my daughter's head would still be very flat

today.

Good luck - I really recommend you call Cranial Tech and going from

there. Then find a new pediatrician

Debbie Abby's mom DOCGrad

MI

> Hi all,

>

> I am new to this group and share the problems and frustrations of

> many of you. My pediatrician has been very casual about the whole

> flat-headed thing since I first voiced my concerns at a sick visit

> when my son was barely 4 months old. He is now 9 months old and

the

> asymmetry in his face is striking. The doctor continues to shrug

it

> off and tells me it will round out on its own. She never even

> mentioned the word " plagiocephaly " My husband and I had to

research

> it on the internet ourselves. When I went for the 9 month check up

I

> brought all the information I had and tried to present it to her.

> She was like a brick wall. She insists it will round out on its

own,

> and if it doesn't, well, " we're all a little asymmetric " UGGHHH.

I

> am so very frustrated. She also claims that the American Academy

of

> Pediatrics is recommending against helmet therapy. Does any one

know

> anything about this? I would rather spend the time and money and

be

> sure my son looks " normal " than sit back and wait and see. It

can't

> be corrected later without cutting him open. She hesitantly gave

me

> a referral to a neurosurgeon, " who is going to tell [us] the same

> thing [she] did " A few days later we called an asked her if she

> would at least write a letter asking for an evaluation of '

> head so that we could take advantage of the free evaluation offered

> by the CT clinic near us - she flat out refused. Her first reason

> was that she wasn't going to refer us to anyone or anyplace that

she

> knew nothing about. When my husband offered to send her the info

and

> give her phone numbers to talk to the physicians there, she still

> refused. Anyway, I am rambling and am very confused as to what to

> do next. Any suggestions?

>

> Kristi

[Guest guest]

Hi again,

Thanks so much for all the quick responses! When I called the CT

clinic, they told me I had to have a letter from a physician

requesting the evaluation. Luckily I have a cousin who is a Dr. and

she agreed to write the letter (even though she knows nothing of the

condition or treatment options and she's never even seen him) We are

going on Monday for the evaluation, but if I need a prescription for

the band, I am not sure how I'll get it. The neurosurgeon we were

referred to won't see us for another three weeks (and since he's

affiliated with my ped, he probably won't give it anyway) Also, I

live in a small town where all the peds cover for each other, so I am

going to have to go outside the area for another doctor (not really a

big problem, just have to drive 30 min or so) Its just so

aggravating that this doctor won't even listen. The band is

not " medically necessary " and that's that. We even asked about

strictly cosmetic reasons and she shrugged that off as well. I

already talked with my insurance and discovered that if the doctor

writes a letter of medical necessity, they'll cover at least part of

it. Of course, my doctor doesn't think its medically necessary so

she certainly isn't going to write that!! My co-workers are incensed

and all have given me their ped's numbers! What an absolute nightmare!

Kristi

> Hi all,

>

> I am new to this group and share the problems and frustrations of

> many of you. My pediatrician has been very casual about the whole

> flat-headed thing since I first voiced my concerns at a sick visit

> when my son was barely 4 months old. He is now 9 months old and

the

> asymmetry in his face is striking. The doctor continues to shrug

it

> off and tells me it will round out on its own. She never even

> mentioned the word " plagiocephaly " My husband and I had to

research

> it on the internet ourselves. When I went for the 9 month check up

I

> brought all the information I had and tried to present it to her.

> She was like a brick wall. She insists it will round out on its

own,

> and if it doesn't, well, " we're all a little asymmetric " UGGHHH.

I

> am so very frustrated. She also claims that the American Academy

of

> Pediatrics is recommending against helmet therapy. Does any one

know

> anything about this? I would rather spend the time and money and

be

> sure my son looks " normal " than sit back and wait and see. It

can't

> be corrected later without cutting him open. She hesitantly gave

me

> a referral to a neurosurgeon, " who is going to tell [us] the same

> thing [she] did " A few days later we called an asked her if she

> would at least write a letter asking for an evaluation of '

> head so that we could take advantage of the free evaluation offered

> by the CT clinic near us - she flat out refused. Her first reason

> was that she wasn't going to refer us to anyone or anyplace that

she

> knew nothing about. When my husband offered to send her the info

and

> give her phone numbers to talk to the physicians there, she still

> refused. Anyway, I am rambling and am very confused as to what to

> do next. Any suggestions?

>

> Kristi

[Guest guest]

Kristi,

What a bonehead your ped. is! My ped. was very open to all the CT lit.

when shown. I'm also going to get him a copy of that Tort. article

posted recently! Wow, get a new ped. You don't need anything for the

free consult at CT. You only need a letter of medical necessity and a

script before they can treat. Go get an appt. with CT now, I highly rec.

them!

Ellen ( Mom to Amy)

New Jersey

On Fri, 21 Jun 2002 14:52:35 -0000 " jketcline " <kmccpa@...>

writes:

> Hi all,

>

> I am new to this group and share the problems and frustrations of

> many of you. My pediatrician has been very casual about the whole

> flat-headed thing since I first voiced my concerns at a sick visit

> when my son was barely 4 months old. He is now 9 months old and the

>

> asymmetry in his face is striking. The doctor continues to shrug it

>

> off and tells me it will round out on its own. She never even

> mentioned the word " plagiocephaly " My husband and I had to research

>

> it on the internet ourselves. When I went for the 9 month check up

> I

> brought all the information I had and tried to present it to her.

> She was like a brick wall. She insists it will round out on its

> own,

> and if it doesn't, well, " we're all a little asymmetric " UGGHHH.

> I

> am so very frustrated. She also claims that the American Academy of

>

> Pediatrics is recommending against helmet therapy. Does any one

> know

> anything about this? I would rather spend the time and money and be

>

> sure my son looks " normal " than sit back and wait and see. It can't

>

> be corrected later without cutting him open. She hesitantly gave me

>

> a referral to a neurosurgeon, " who is going to tell [us] the same

> thing [she] did " A few days later we called an asked her if she

> would at least write a letter asking for an evaluation of '

> head so that we could take advantage of the free evaluation offered

> by the CT clinic near us - she flat out refused. Her first reason

> was that she wasn't going to refer us to anyone or anyplace that she

>

> knew nothing about. When my husband offered to send her the info

> and

> give her phone numbers to talk to the physicians there, she still

> refused. Anyway, I am rambling and am very confused as to what to

> do next. Any suggestions?

>

> Kristi

>

>

>

[Guest guest]

Since I am not busy at work today, I find myself anxiously awaiting

any response to my concerns and you guys have not let me down!! I

live in the Columbus, OH area and have an appointment at a clinic in

Cleveland on Monday. They told me I needed a letter requesting an

evaluation (from a physician). This has turned out not to be too big

a problem since my cousin is a doctor and has agreed to write it

(even though I hardly know this cousin, she lives in Staten Island,

and has never even seen )

I too find it amazing that this ped is not even willing to listen and

learn more. She even insinuated that all my info came from the

manufactures of the bands and hence was biased. When I asked about

ocular disturbances and jaw misalignment her comment was, " and do you

think you would spend that kind of money if they didn't tell you

that? " When dh was asking the ped for the letter, he also asked

where she was getting her info from because we would like to see it.

And, YES, she squirmed! She evidently just attended some pediatric

conference where plagio and helmet therapy were discussed. She

talked about some study but couldn't tell us who had done it or what

it was called. (one blurb at one conference and one study makes her

an expert?) Anyway, I have two articles from reputable sources,

both of which talk about what a primary care physician can do in

terms of early intervention and treatment to hopefully avoid the need

for helmet therapy. Along with those she'll be getting a note from

me asking that she read them and consider providing early

intervention to her patients in the future. Since I will NEVER be

going back there, I guess I'll never know if she does it or just

throws the articles away.

Thanks to all for your past and future help and support!!!

Kristi

> Kristi,

> I would kick that ped to the curb but fast!!! If she cannot even

open her

> mind to learning about plagio, she will never be the professional

that she

> claims to be. You don't need a referral to go to CT for the free

eval.- I

> went around my ped when she blew me off at 3 months, and CT told me

to

> reposition for a month- we did and it didn't help the asymmetry. I

simply

> told her what I wanted and she wrote out the rx because she was

willing to do

> whatever to make me happy at that point. I would ask her

specifically to

> share the information that she has regarding the AAP not

recommending helmet

> therapy, ask her for backup documentation and I would love to see

that one

> stammering. Where are you from? Perhaps we can help with other

members

> letting you know who they have used and so forth. I would start

with this

> group and see if any Doctor leads can come out of it, but just know

that you

> can call CT also and I'm sure they can share some info on what Docs

are

> writing their referrals, etc. Good for you for pressing the

issue. I would

> really give her a piece of my mind if she's not budging, and tell

her to open

> her eyes and start doing some homework! I can't believe you even

printed the

> info and she still can't get it! Good luck and please keep us

posted!

>

> ' Mom

[Guest guest]

Kristi,

Hello and welcome. I can really feel your frustration about the situation

with your ped and I feel it right along with you. It is very unfortunate that

we parents have to diagnose our own children and beg for help from our

doctors. Are you with a PPO or an HMO? Can you see a specialist of your

choice? If you go to www.plagiocephaly.org there is a link to a list of

band/helmet friendly specialists. You can search the list by region. Also,

you can go to CT's homepage and find doctors that they typcially work with -

there might be on in your region listed there. Otherwise I would really press

this ped and if she won't budge then switch to one that will help you get the

referral you need. I understand your need for urgency as at 9 months you need

to get moving to get the best correction possible.

Best of luck with your struggle and please let us know if we can help!

Marci (Mom to )

Oklahoma