Fw: Newbie with older baby

[Guest guest]

--------- Forwarded message ----------

From: Ellen Hemple <hemplee@...>

PositionalPlagioSupport

Date: Wed, 15 May 2002 18:01:03 -0400

Subject: Newbie with older baby

Message-ID: <20020515.180107.-229729.0.hemplee@...>

Hello!

My name is Ellen and my 1 year old daughter Amy has plagio. Here is our

story. By the time we had our 2 month visit to our Ped., I was very

concerned about the shape of Amy's head. Our ped. shrugged it off and

said to try repositioning and moving stimulus to her right side. By 4

months I was so concerned we saw Dr. Queenan, neurosurgeon at the well

respected A.I. duPont Institute in Delaware. He looked at her and said

moderate plagio with slight tort. I asked about helmets (not knowing

about bands and aggressive therapy at the time) and he scoffed and said

that helmets don't work and insurance companies don't pay for them! He

suggested repositioning, propping, and neck stretches. When Amy was 5

months old, just 1 month later, we saw the neuro. again because I knew

correction was best done on younger babies. He just told us the same

advice. I brought up my same concerns to our ped. at the 6 and 9 month

visits. His advice was the same as many of you have heard....the

condition will improve as the baby spends more time sitting up, it will

round out on its own, her hair will cover it! He even has triplets, 2 of

whom have plagio in the back so it doesn't affect the symmetry their

faces! He did nothing with his own children and therefore was not overly

concerned. I however could see and was alarmed by all the asymmetries of

her head, face, ears, and cheeks.

A day before Amy's first birthday, I picked up a BabyTalk magazine, which

is sent to me only occasionally. In it was a reader's response to an

article on plagio. and a response from CAPPS. I got up out of bed and

visited this web site. I was in tears seeing all the stunning and

positive results achieved by banding. I contacted their co-founder and

others listed on the site. One recommendation was to see a Cranial Tech.

clinician for a free consultation. We live in New Jersey and the CT is

21/2 -3 hours from our home. My husband was not supportive at first

because he could not see the asymmetries and this was his perfect little

girl. I visited every web site I could to show him the results and what

might happen if we did nothing. In 3 days I was seriously " off the

fence. " We had a ped. visit and a Cranial Tech visit in the span of one

short week.

The OTR at CT confirmed what I had known all along. Yes, they could

help, it will probably take 6-61/2 months and 2 DOC Bands. Her

asymmetries were 21mm, 11mm, and 9mm. Well over the 6mm in 2/3

categories recommended for banding. We are now awaiting a letter of

medical necessity from our ped. and the prescrip. I am hopeful we get

that this week and can schedule a casting for next week.

CT can't do anything without this info. and they'll hope for immediate

approval from AEtna USHealthcare. Our insurance initially has said this

will be covered out of network as DME. We have a $100.00 deduct. and

they pay 80%. This means we will pay about $1400 for 2 bands. Should I

be fighting my insurance to get them to pay 100%? Where is the famous

Tricia s? We need advice in this area. I have been advised to

have my ped. call and tell AEtna is a necessity and have it processed on

the HMO side of the plan. When I ran this by CT they said they only have

a code which is a DME code and AEtna will pick this up. Any suggestions?

Should I fight or be relieved they'll pay that much?

Are we proceeding propery folks? I read all the lit. from CT and am

still stunned that doctors are not right about this one! How can they

possibly think that ears, jaws, cheeks, and heads that aren't aligned

won't " be a problem " later on? Our OTR pointed out that even one of

Amy's eyes is pushed forward in alignment. I was horrified that I hadn't

noticed that. The awful shame is that we viewed a casting of a two year

old's head at CT, not much different than my daughter's. This almost

adult sized misshapen head is the one this child will have for the rest

of his life.

I feel as if I have been tremendously blessed to find CAPPS and this

group before it was too late.

My best regards to you all and a heartfelt thank you for helping others!

Sincerely,

Ellen, mom to Amy

Bridgeton, NJ

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[Guest guest]

Ellen,

Welcome to the group. Your story sounds all too familiar with many parents

out there that are given the run around from their Doctors. I too am shocked

that the medical community, those that we consider intelligent and

all-knowing, are so dumbstruck that they wouldn't think the shifting of the

skull bones causing misalignment might cause some problems in the future,

whether that be pain, minor discomfort, jaw problems, vision problems, etc.

Are they so book smart they are common sense and people stupid? It seems

like they would be the first to consider this as a potential physical

problem- but they get hung up on the word cosmetic and downplay it as

trivial. I hope and feel that in 10 years, their attitudes and studies will

show a more knowledgeable medical field.

Your a great mom for constantly approaching your ped, good for you for not

giving up! I'm sure one of the moderators, Marci, will respond to your

insurance questions- she's a pro! Wishing you the best of luck in getting

whatever you need to help your little girl and please continue to update us

on what's happening. If you have any questions, don't hesitate to ask, there

are lots of moms and dads out there ready to help you- me included!

' Mom

P.S. For the mild tort you can also check out the support group at

www.torticolliskids.org for more info on stretching and exercises. Don't

forget that the tort is also important in resolving- my son was dx

with tort at 2 months so if I can help you in anyway- please let me know.

[Guest guest]

Hi Ellen,

I'm sorry you were told that helmets and bands don't work. My daughter wore a

locally made helmet starting at 9 months until she was 15 1/2 months and got

some real good correction. It is a shame that specialists and peds don't know

more about the bands and helmets and about plagio in general!!

I'm glad you have hooked up with the folks at CT. They do wonders with older

babies. I'm sure you have already heard from Debbie (one of our moderators)

about her daughter who started at 11.5 months with the DOCband and got great

correction.

As far as insurance goes, you sure could appeal and try to get better

coverage. At least you will be getting something to start with and can appeal

for the rest.

Good luck and keep us posted!!

Marci (Mom to )

Oklahoma