Introduction

[Guest guest]

Kim:

Hi & welcome to our group! I'm sorry to hear about the insurance

battle you're going through. It's so frustrating. I am surprised to

hear that CT is also saying the treatment is experimental. They've

been treating children for well over 10 yrs now & have the highest

success rates. BCBS is generally a fight for a lot of parents, keep

fighting for your money. There are countless parents in this group

who had been denied & denied but ultimately won their appeals. Keep

appealing & find a ton of information to send to them that supports

these bands. In the mean time, CT would probably set you up on a

monthly payment plan while you're fighting with your insurance. But

I know even I couldn't afford those monthly payments, but it is an

option that I hope would work for your family. I hope some other

parents can help you with your battle. Best of luck to your family -

please keep us updated on 's situation & again welcome to our

group.

Debbie Abby's mom DOCGrad 6/22/01

MI

> Hello!

>

> My name is Kim from Virginia and I am a mom to a preemie born at 34

> weeks named . He is 7-months now and doing well. He has

> postional plagiocephaly. Well, after 6 months of doing various

> things to promote head growth and having everyone tell us we need

to

> do more positional things, we decided to go see a specialist.

Well,

> the specialist diagnosed his positional plagiocephaly and

prescribed

> him the DOC Band. That is where we are at now. Blue Cross and

Blue

> Shield already denied us and we are fighting to get it approved. I

> was just wondering what did you all do in regards to insurance?

> does not have the Band yet nor (unfortunately) we

> do not have the money outright to pay for it due to huge bills from

> his NICU stay. Tactics, techniques, pleads did you all use to get

> insurance to pay? Thanks!!!

>

> Kim A

[Guest guest]

Hi Kim,

I just wanted to welcome you to our group! I'm sorry that I can't be

of any help to you regarding insurance, but as you can see already

there are plenty out there that can! You have come to the right

place to have your questions answered or blow off a little steam.

I'm glad that you have joined our group and I wish you luck battling

your insurance company. Please keep us up to date on how you and

are doing!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello!

>

> My name is Kim from Virginia and I am a mom to a preemie born at 34

> weeks named . He is 7-months now and doing well. He has

> postional plagiocephaly. Well, after 6 months of doing various

> things to promote head growth and having everyone tell us we need

to

> do more positional things, we decided to go see a specialist.

Well,

> the specialist diagnosed his positional plagiocephaly and

prescribed

> him the DOC Band. That is where we are at now. Blue Cross and

Blue

> Shield already denied us and we are fighting to get it approved. I

> was just wondering what did you all do in regards to insurance?

> does not have the Band yet nor (unfortunately) we

> do not have the money outright to pay for it due to huge bills from

> his NICU stay. Tactics, techniques, pleads did you all use to get

> insurance to pay? Thanks!!!

>

> Kim A

[Guest guest]

Eileen,

Thanks for the intro and welcome to the group! I'm glad you found us and I'm

especially glad that reading some of our posts has made you feel better about

getting the band. You sound very well informed and comfortable with your

decision - that's great! I think you will find that Max will take to the band

with hardly a care in the world. The folks at Cranial Tech are very

knowledgeable and will help make the transition into the band as easy as

possible.

Your story sounds quite similar to mine. We noticed the flattening when Meg

was 3 months old. We bugged the ped about it until her 7 month check when he

referred us. It took one month to get the CT scan and another month to get in

to see the ortho! Argh!! How frustrating! At 9 months we finally had the

helmet.

Good luck and please let us know how it goes on Thursday.

Marci (Mom to )

Oklahoma

[Guest guest]

Eileen & Lars.

Thank you for sharing your story, and I hope that all goes well with Max in his new band!

Keep us updated, and let us know how he is adjusting to his band. Before you know it, POOF!

he will be rounding out before you even know what hit ya. (it is amazing how soon you can notice the results)

Welcome

Anne

Mom of Livia

DOC Grad 12/01

Canada

Introduction

Hi,Since I just replied to a message, I should probably introducemyself. My son Max (Maximilian) will receive his DOC band this Thursday from the Cranial Tech office in Burbank, CA. Max will be 9 months oldthis Sunday, 2/10.Max's story is the same as a lot on this group. We noticed his head flattening at 6 weeks & have discussed it with the pediatrician at every appointment since then. The ped said all the standard things like "it will round out on its own" & "put him on his tummy". He neglected to notice that Max doesn't have full range of neck motion which caused him to favor the back right side of his head. We did a lot to keep him off his flat spot, but not as much as we could have because we believed that it would correct itself in time. It hasn't. The good news is that while the orthotist classified Max's case as moderate to severe, his facial asymmetry is relatively minor (4mm cranial vault & 4mm frontal-orbital).I've been reading the postings on this group for the last month now & they've really helped me feel more positive about the helmet. We're looking forward to finally seeing some improvement.Thanks for the support.Eileen Lars RosenbladFor more plagio info

[Guest guest]

Eileen,

Hi and welcome to the group! Have you gotten any dx of tort? If your child has limited range of motion, and one side is flat, sounds like tort is a factor here. Make sure to work on the tort, because essentially, its causing the plagio. If you do not address the tort, and opt for a band, chances are, once graduated the tort will encourage regression as the child will still favor one side. Please look into this if you haven't- I know some Docs say that tort will work itself out too- how- I have no idea! It took agressive therapy for my son to be able to look to his left- I seriously doubt he would have gotten better magically on his own. Check out the www.torticolliskids.org for pics of kids with tort- see if they look similar to what you are seeing- if so, demand a referral for an MRI to rule out any bony anomalies (very rare)and subsequent pt for muscular tort. Please let me know if I can help you in anyway!

' Mom

[Guest guest]

Eileen, Lars & Max

Welcome to our group Wow, we sure have had a lot of new members

lately, yippee! Good luck with Max's new DOCband he'll be getting

this week. Let us know how he adjusts to wearing it - as well as how

you & your family adjust to it, we find it's usually harder on us

adults than it is on the baby. I'm sure Max will do just fine in it.

You mentioned Max also did not have full range of motion in his

neck. Did he ever have physical therapy to help that? Has it

improved any?

So happy to meet you, we all look forward to hearing about Max's

rounding head over the next few mos.. Be sure you let us know how

Thurs goes - Good luck!

Debbie Abby's mom DOCgrad

MI

--- In Plagiocephaly@y..., " larsandeileen " <eileen.edwards@a...>

wrote:

> Hi,

>

> Since I just replied to a message, I should probably introduce

> myself.

> My son Max (Maximilian) will receive his DOC band this Thursday

from

> the Cranial Tech office in Burbank, CA. Max will be 9 months old

> this

> Sunday, 2/10.

>

> Max's story is the same as a lot on this group. We noticed his

head

> flattening at 6 weeks & have discussed it with the pediatrician at

> every appointment since then. The ped said all the standard things

> like " it will round out on its own " & " put him on his tummy " . He

> neglected to notice that Max doesn't have full range of neck motion

> which caused him to favor the back right side of his head. We did

a

> lot to keep him off his flat spot, but not as much as we could have

> because we believed that it would correct itself in time. It

hasn't.

> The good news is that while the orthotist classified Max's case as

> moderate to severe, his facial asymmetry is relatively minor (4mm

> cranial vault & 4mm frontal-orbital).

>

> I've been reading the postings on this group for the last month now

&

> they've really helped me feel more positive about the helmet.

We're

> looking forward to finally seeing some improvement.

>

> Thanks for the support.

>

> Eileen

> Lars Rosenblad

[Guest guest]

Thanks for the kind words. I sound calm & confident about the

decision to band Max because I didn't write before when I felt like a

guilt-plagued, lunatic, failure of a mom. I've calmed down

considerably now that the casting is over & we're on our way to

results. Having real measurements of Max's facial asymmetry helped

me. Also, I finally realized that things could be a lot worse - Max

is otherwise healthy & happy & we will still achieve a lot of head

rounding.

About the neck muscles. The suggestion for pt is a good one which

I'll bring up at Max's 9 month checkup next week. My husband & I are

trying to do the prescribed neck stretches, but it is not going well.

I've read the web sites with tips on how to do them, but am still

having trouble. Of course, I am also having trouble putting a clean

diaper on the wiggly boy.

We finally took photos showing Max's head flattening. If I can

figure

out the instructions, I'll post them on the site.

Eileen

[Guest guest]

Dianne,

Thanks for the background and information. It sounds like you really do have a

good ped. My current ped is GREAT, but the one we had back when was

getting diagnosed, well.......

Great to have you in the group! I'll have to get over and check out the pictures

soon!

Marci (mom to )

Oklahoma

[Guest guest]

Dianne:

Thanks for your story! It's so great to hear that your ped. has been

on top of this. Stories that are similar to your friend's with the

18 mos old w/plagio are way too common. & Kayla are adorable, I

also love their names! I am happy that the DOCband has done so well

with ! I am sure he'll graduate soon so you can see his handsome

head w/o the band in no time . Keep us posted.

Debbie Abby's mom DOCGrad

MI

> Thank-you for welcoming me to your group!! Some have asked to hear

a

> little of my story.... and Kayla were born on October 10,

2001.

> was my baby A and was head down the entire preg. I spoke to

my

> ped, who I believe is the BEST!!, about watching their heads, I

have

> a friend with an 18 month old with plagio and they have done

nothing,

> they think there is nothing wrong. Well, anyway, at about 2 months

I

> started noticing the flatness, ped said there was nothing they

could

> really do until 4 months so at 3 months it was worse, that is when

we

> noticed the ear misalignment. so by 4 months we were off to

> Children's Hospital in Boston, measures at 17mm and the

plastic

> surgeon also noticed a little in his forehead, I couldn't see that

> myself! March 1st we got the helmet, and it is working wonders,

> although I have to admit I miss seeing what his face really looks

> like!! Well, guess that is pretty much my story, I have added

photos

> to the album page, entitled , and you can see my little ones.

Oh

> and Kayla has NO problems, so just has the band!!

>

> Dianne

> Massachusetts

[Guest guest]

Dianne,

Thanks for sharing your cuties story. I have a friend that also blew off

concerns and she was well aware before 6 mos.- I know she didn't even try

repositioning as Grandma and Dad put him in the bouncer often and made the

comment, oh he loves it so much he could stay there for hours!!! (this was

way before I became a member of the head police:) needless to say, his head

shape remained severe brachy at 2 years old today (today is his birthday).

Good for you for getting answers and doing what you feel is the best for your

children!

' Mom

[Guest guest]

Super cute babies! I'm glad it was caught in enough time. Generally

that means less time in the band. So you will see his little face

sooner!

Ana & Jace (banded 4/5/02)

> Thank-you for welcoming me to your group!! Some have asked to hear

a

> little of my story.... and Kayla were born on October 10,

2001.

> was my baby A and was head down the entire preg. I spoke to

my

> ped, who I believe is the BEST!!, about watching their heads, I

have

> a friend with an 18 month old with plagio and they have done

nothing,

> they think there is nothing wrong. Well, anyway, at about 2 months

I

> started noticing the flatness, ped said there was nothing they

could

> really do until 4 months so at 3 months it was worse, that is when

we

> noticed the ear misalignment. so by 4 months we were off to

> Children's Hospital in Boston, measures at 17mm and the

plastic

> surgeon also noticed a little in his forehead, I couldn't see that

> myself! March 1st we got the helmet, and it is working wonders,

> although I have to admit I miss seeing what his face really looks

> like!! Well, guess that is pretty much my story, I have added

photos

> to the album page, entitled , and you can see my little ones.

Oh

> and Kayla has NO problems, so just has the band!!

>

> Dianne

> Massachusetts

[Guest guest]

Hi Diane thanks for the info-it is great that both you and your ped were so aware and on top of things. Luck you. Itosunds as if things are going beautifully. I am sure you will ill get to snuggle that pretty little ROUND head soon. Keep up the good work and keep us posted..We are so glad your re here. here are two links regarding multiples.

Beck

Click here: Parenting Multiples

Click here: : Plagiocephaly Files

[Guest guest]

Reg Reynolds

I sent her an file of information about autism (with emphasis on ABA/AVB), and I

will send it again here (the list won't accept it, , but you should get

it).

P.S. I have heard that Teach Me Language is going to be better for later on.

> From: " Louis & Koiner " <koiner@...>

> Subject: Re: Introduction...

>

> Could anyone who responds to this post either respond on the forum, or email

> me also? I am also interested in the answers to this post. Blessings!

[Guest guest]

's Mom:

My heart goes to out to you. You are finally on

the correct path. , Dr. Goldberg and his

staff of scientists and researchers are finally

able to help our children. Once the new immune

modulators are circulated and appropriate funding

received we will all be living substantially easier

lives.

Your story truly touched me in a special place.

May you and your family be blessed with good

fortune ahead of you!

Michele

[Guest guest]

I didn't see it either! Yikes!

Marci

[Guest guest]

Hi Amy,

You are very lucky to have found a pediatrician to recommend a helmet

while your son is still so young! This is definitely the best time

to do it! Good luck!

Tamara (mom to Novali 15 months)

> Hi. I just found this list today, and I'm so glad! My son just had

his 4

> month checkup, and our pediatrician recommended that he be fitted

for a

> helmet due to his flat head. She says that she is usually the last

to

> recommend this, but she felt that his was pretty severe.

>

> I have been doing a lot of reading up on this condition, and now I

feel just

> terrible knowing that I could have prevented this! Everyone

(including our

> last pediatrician-we changed) said not to worry, that his head

would round

> out on its own when started sitting up and crawling and

such.

>

> I've attached a photo I snapped of him while ago. At his 2-month

visit, the

> (old) pediatrician noticed that his flat spot was more to the

right, and

> suggested that we try re-positioning him so that he would lie on

his left

> side more. Well, we did that, and now he is just pretty evenly flat,

> although it is still more to the right.

>

> Anyway, sorry such a long post, but I am happy to know that you all

are

> here! We are in the process of finding out if insurance will cover

this, and

> getting an appointment with a specialist. I had no idea until I

looked at

> all of your pictures that there were so many different kinds of

helmets. Is

> there any one kind that is better? Why is one type used over the

other?

>

> Thanks!

> Amy

> (b. 3/22/00)

[Guest guest]

Did I miss this post???? I see the reply by Novali's mom, but not

the original post.... I cannot find it on our board anywhere? Am I

losing my blonde mind? I want to see the attachment! HELP!

Debbie Abby's mom

MI

>

> > Hi. I just found this list today, and I'm so glad! My son just

had

> his 4

> > month checkup, and our pediatrician recommended that he be fitted

> for a

> > helmet due to his flat head. She says that she is usually the

last

> to

> > recommend this, but she felt that his was pretty severe.

> >

> > I have been doing a lot of reading up on this condition, and now

I

> feel just

> > terrible knowing that I could have prevented this! Everyone

> (including our

> > last pediatrician-we changed) said not to worry, that his head

> would round

> > out on its own when started sitting up and crawling

and

> such.

> >

> > I've attached a photo I snapped of him while ago. At his 2-month

> visit, the

> > (old) pediatrician noticed that his flat spot was more to the

> right, and

> > suggested that we try re-positioning him so that he would lie on

> his left

> > side more. Well, we did that, and now he is just pretty evenly

flat,

> > although it is still more to the right.

> >

> > Anyway, sorry such a long post, but I am happy to know that you

all

> are

> > here! We are in the process of finding out if insurance will

cover

> this, and

> > getting an appointment with a specialist. I had no idea until I

> looked at

> > all of your pictures that there were so many different kinds of

> helmets. Is

> > there any one kind that is better? Why is one type used over the

> other?

> >

> > Thanks!

> > Amy

> > (b. 3/22/00)

[Guest guest]

God Bless You!

I found a real heart felt moment reading your

introduction. Good luck to you all.

Love,

Sherri

--- kathryn10002000 <johnsmom@...> wrote:

> I have just found this group and have spent a while

> looking through

> the websites. I find all the information very

> interesting and

> thought provoking. Our adopted 5 yr old son (our

> biological

> grandson) has been diagnosed as high functioning

> autistic. 's

> mother (our daughter) was diagnosed with Lupus at

> the age of 9. She

> was 28 weeks pregnant when she died and was

> born. So I find the

> autoimmunity link very feasible. obvisiously

> might have a

> predispostion to an immunity disorder and his early

> birth would also

> play havoc with his immune system.

>

> We live in the NW part of Georgia - are there any

> members here from

> Georgia? And if so, are there any doctors in the

> Atlanta area

> familiar with Dr. Goldberg's work?

>

> I look forward from hearing from others. Thanks in

> advance for any

> information that you have to share.

>

> 's Mom

>

>

__________________________________________________

[Guest guest]

Hi Taryn:

Welcome to our group! We're happy you have joined our group as well

as the tort group

How has the repositioning been going? I'm sure it can be pretty

difficult with the torticollis.

We look forward to getting to know you better over the coming mos of

your repositioning!

Please keep us updated on 's progress.

Debbie Abby' smom DOCgrad

MI

> Hello everyone!!! I currently belong to the torticollis group and

decided to join this one also. My name is Taryn Schilling and my

daughter was dx with tort and plagio at four months. We are

currently awaiting the final paperwork to start her PT. I had

concerns about this since about 5 weeks of age and within the last

month or so her tort has gotten worse and she has a very flat back of

her head. I bought the Head N' Back to Sleep positioner and the

Boppy Noggin' Nest. We have also been alternating ends of the crib

that she sleeps in. I wanted to introduce myself and I look forward

to getting to know everyone. The people on the other list are

wonderful and have offered so much advice and support and I am sure

this list will be the same.

>

> Taryn and

[Guest guest]

Thanks for the warm welcome!!! It seems to have helped to me but maybe it's wishful thinking. Her head still seems very flat and she has an indentation on her non-tort side. It is very difficult with the tort it seems. I will definitely keep everyone updated!!!

Taryn and

Re: Introduction

Hi Taryn:Welcome to our group! We're happy you have joined our group as well as the tort group :)How has the repositioning been going? I'm sure it can be pretty difficult with the torticollis.We look forward to getting to know you better over the coming mos of your repositioning! Please keep us updated on 's progress.Debbie Abby' smom DOCgradMI> Hello everyone!!! I currently belong to the torticollis group and decided to join this one also. My name is Taryn Schilling and my daughter was dx with tort and plagio at four months. We are currently awaiting the final paperwork to start her PT. I had concerns about this since about 5 weeks of age and within the last month or so her tort has gotten worse and she has a very flat back of her head. I bought the Head N' Back to Sleep positioner and the Boppy Noggin' Nest. We have also been alternating ends of the crib that she sleeps in. I wanted to introduce myself and I look forward to getting to know everyone. The people on the other list are wonderful and have offered so much advice and support and I am sure this list will be the same. > > Taryn and For more plagio info

[Guest guest]

Taryn -

Do you carry around in a sling or baby carrier during the day

to keep her off the flat spot?

Good luck with the stretching. I know what a pain in the neck that

is. pun intended.

Dane's mom DOC Grad and tort resolved

> Hello everyone!!! I currently belong to the torticollis group and

decided to join this one also. My name is Taryn Schilling and my

daughter was dx with tort and plagio at four months. We are

currently awaiting the final paperwork to start her PT. I had

concerns about this since about 5 weeks of age and within the last

month or so her tort has gotten worse and she has a very flat back

of her head. I bought the Head N' Back to Sleep positioner and the

Boppy Noggin' Nest. We have also been alternating ends of the crib

that she sleeps in. I wanted to introduce myself and I look forward

to getting to know everyone. The people on the other list are

wonderful and have offered so much advice and support and I am sure

this list will be the same.

>

> Taryn and

[Guest guest]

I work at home doing medical transcription so I can't carry her around or hold her all the time. I do have the Boppy Noggin' Nest in her car seat when we go places, do tummy time often, and always have supports in her chairs that she sits in. We will be starting PT next week.

Taryn

Re: Introduction

Taryn -Do you carry around in a sling or baby carrier during the day to keep her off the flat spot? Good luck with the stretching. I know what a pain in the neck that is. pun intended.Dane's mom DOC Grad and tort resolved> Hello everyone!!! I currently belong to the torticollis group and decided to join this one also. My name is Taryn Schilling and my daughter was dx with tort and plagio at four months. We are currently awaiting the final paperwork to start her PT. I had concerns about this since about 5 weeks of age and within the last month or so her tort has gotten worse and she has a very flat back of her head. I bought the Head N' Back to Sleep positioner and the Boppy Noggin' Nest. We have also been alternating ends of the crib that she sleeps in. I wanted to introduce myself and I look forward to getting to know everyone. The people on the other list are wonderful and have offered so much advice and support and I am sure this list will be the same. > > Taryn and For more plagio info

[Guest guest]

Hello Taryn (love that name!) and welcome to the group. Sounds like you have

the ball rolling in getting the tort resolved and the repositioning should

help the tort and the plagio. That's great! We have a number of repositioning

parents in the group who have achieved GREAT results through aggressive

repositioning and PT for tort when appropriate.

I'm glad you have joined us and I hope you will keep us posted on 's

progress!

Marci (Mom to )

Oklahoma

[Guest guest]

That is a very good idea. I have a digital camera so I can get the pictures right away. It will be hard to tell with besides because she's got tons of hair!!! They only add 10 pounds to your picture but about 100 to mine!!!! LOL!!!

Taryn

Taryn:You are very welcome for the welcome. I would suggest you take weekly photos of 's head, especially from the top view, this view usually shows the plagio the best. Date the photos, then go back week by week to compare the photographs to. This will really help in keeping track of any repositioning progress. It is so hard for us to tell as we stare at their heads constantly! Pictures don't lie (although I like to think they add 10 lbs to my picture LOL). Debbie Abby' smom DOCgradMI

For more plagio info

[Guest guest]

Thanks for the welcome...I actually have hated my name in the past but have come to like it because it's unique. I will surely keep you posted on 's progress.

Taryn

Re: Introduction

Hello Taryn (love that name!) and welcome to the group. Sounds like you have the ball rolling in getting the tort resolved and the repositioning should help the tort and the plagio. That's great! We have a number of repositioning parents in the group who have achieved GREAT results through aggressive repositioning and PT for tort when appropriate.I'm glad you have joined us and I hope you will keep us posted on 's progress!Marci (Mom to )OklahomaFor more plagio info