Re: educating doctors - very long

[Guest guest]

Hi Amy,

That was a great letter. You have a really good pedy. Maybe we should

all write letters to our pedys! I know mine doesn't have a clue about

plagio.

Take care,

> i can't remember who posted a while back asking about educating

> doctors and whether or not anyone had ever brought their child's

> " headsicle " to show their doctor. however, i do have a good story

to

> share. my daughter, emma's pediatrician gave me the usual " it will

> round out on its own " line at her 3 month, 4 month, and 6 month

> visits. without any referrals from the pediatrician, i went ahead

and

> took emma to see a pediatric neurosurgeon, then took her for a free

> evaluation at CT, and then took her to see a craniofacial surgeon.

she

> was banded on May 6 and we are already seeing some improvement.

after

> emma received her band, i wrote the following letter to our

> pediatrician:

>

> " May 14, 2002

>

>

> Dr. XXXXXXXX

> XXXXXXX Road Pediatrics

> XXXXXXXXXXXXXXXXX

> Raleigh, NC XXXXX

>

>

> Dear Dr. XXXXXXX,

>

> I wanted to send you a quick note to let you know that we have

decided

> to pursue treatment for Emma's plagiocephaly with the Dynamic

Orthotic

> Cranioplasty band. We are continuing with physical therapy at

> HealthSouth for her torticollis, as well as the craniosacral

therapy

> for which you referred her. We are also taking her to see a woman

who

> is an occupational therapist with training in visceral manipulation

> and craniosacral therapy. In addition to all this, we are doing

neck

> stretches four to five times daily and have been placing her to

sleep

> on her left side since she was about three and a half months old.

We

> took her to see a craniofacial surgeon who rated her plagiocephaly

as

> severe and recommended the DOC band. Her cranial vault asymmetry

was

> 18 mm, and her cranial base asymmetry was 11 mm. She received her

DOC

> band on May 6th and has adjusted very well. We are hopeful that we

> will see great results.

>

> I wanted to keep you up to speed on everything we are doing and

also

> ask that if you have any patients in the future who are diagnosed

with

> congenital torticollis, that you please mention to them the

importance

> of altering their child's sleeping position. From the little

research

> that I have had time to do, it appears that plagiocephaly often is

the

> result of torticollis and back sleeping. I'm not sure if aggressive

> repositioning of Emma as soon as she was diagnosed with the

> torticollis would have prevented the plagio, but it's quite

possible

> it could have lessened the severity. Unfortunately, I didn't know

this

> until her plagio was already severe, and she was able to roll

around

> on her own. So, I am just asking that this bit of information be

> shared so that perhaps others won't have to go through what we are

> going through.

>

> Emma continues to delight us with her developing skills and

> personality. She is quite the happy little girl!

>

> We look forward to seeing you at Emma's nine-month check up on June

> 26th.

>

> Sincerely,

>

> Amy Coppedge "

>

> i included a number of articles from peer-reviewed journals that

spoke

> to the high occurrence of plagio in babies with tort (many that i

> found through the bookmarks section). anyway, i found out yesterday

> that our pediatrician called CT and asked that someone come to his

> office to talk to him, his colleagues, and staff about plagio and

what

> they can tell parents to do to prevent it. (also, i'm sure, to

learn

> more about the DOC band.) i don't know if this is common practice,

as

> emma is my first child, but, in addition to the doctor visiting us,

> his office sent a nurse to the hospital after emma was born to talk

to

> us about taking care of her. it's great to think that maybe these

> nurses will now tell new parents about repositioning. anyway, i

think

> this is so great and it reinforces my high opinion of him and the

fact

> that even the doctors need to be made aware and educated. don't be

> afraid to pass on your new found knowledge to people in the medical

> field. they may not respond as positively as our pediatrician, but

you

> never know.

>

> amy

> mom to emma (DOC band 5/6/01)