A newcomer looking for answers and support

[Guest guest]

I am new to all of this. Our son was diagnosed with tort about 8

weeks ago. We have been in pt and are seeing some improvement in

range of motion. However, we just finally got in to see the

craniofacial specialist today. It was the strangest doctor visit I

have ever been in. When the doctor finally arrived (after an hour

wait) he brought with him 5 different people including the person

who represents the company who makes the helmets. I felt like our

doctor had already diagnosed our son without even examining him. I

had this overwhelming feeling that this was just a medical

conspiracy! Has anyone else felt this? This doctor heavily

recommended the helmet but made it clear that it would be purely

cosmetic....

So, I ask this question. Who would decide not to use the helmet?

Every time I even consider not doing it, I think about the guilt I

will have down the road if my son's head ends up flat. Is there

anyone out there who opted not to do the helmet? How did things

turn out?

Also, our helmet provider is telling us it will run about $3500 and

he'll have to wear it about 4-6 months. Is this correct? And, of

course, there will be no help with insurance. I'm very frustrated

and angry. I can see that Zane has a flat spot on his head but will

the helmet really help? And, if it does help the shape, what will

it do to the wonderful disposition that he now has. He is a

wonderfully happy little boy! I don't want that to change.

Looking for answers and support.

Zane's mommy,

[Guest guest]

Hello

Welcome to the group. The worst part about a band/helmet is making

the decision. How old is your son? What type of helmet would this

be? How did they diagnose him? Did they do measurements? We all

have heard the speech that is is purely cosmetic, but my experience

is that my daughter ALWAYS had bad ear infections and eversinse we

have treated her plagio she has not had one.

As of insurance. It depends on how severe your son is. What type of

insurance you have, and maybe even what type of helmet you use. Do

you have a Cranial technology soemwhere close to you? You can go to

their site at www.cranialtech.com. They will do a free evaluation,

and they only recomend banding if needed.

Also in our links section you can find a severity assesment link of

plagio / Insurance folder / bands and helmet folder that will tell

you what type of bands are out there and if they are FDA approved or

not and some other links that might be helpful.

Please let us know what you decide. Can you post some pictures of

Zane?

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 04

--- In Plagiocephaly , " karenbicak " <karenbicak@y...>

wrote:

> I am new to all of this. Our son was diagnosed with tort about 8

> weeks ago. We have been in pt and are seeing some improvement in

> range of motion. However, we just finally got in to see the

> craniofacial specialist today. It was the strangest doctor visit

I

> have ever been in. When the doctor finally arrived (after an hour

> wait) he brought with him 5 different people including the person

> who represents the company who makes the helmets. I felt like our

> doctor had already diagnosed our son without even examining him.

I

> had this overwhelming feeling that this was just a medical

> conspiracy! Has anyone else felt this? This doctor heavily

> recommended the helmet but made it clear that it would be purely

> cosmetic....

>

> So, I ask this question. Who would decide not to use the helmet?

> Every time I even consider not doing it, I think about the guilt I

> will have down the road if my son's head ends up flat. Is there

> anyone out there who opted not to do the helmet? How did things

> turn out?

>

> Also, our helmet provider is telling us it will run about $3500

and

> he'll have to wear it about 4-6 months. Is this correct? And, of

> course, there will be no help with insurance. I'm very frustrated

> and angry. I can see that Zane has a flat spot on his head but

will

> the helmet really help? And, if it does help the shape, what will

> it do to the wonderful disposition that he now has. He is a

> wonderfully happy little boy! I don't want that to change.

>

> Looking for answers and support.

>

> Zane's mommy,

[Guest guest]

Hello & welcome! How old is Zane? I'll reply to your questions

below your questions!

>the doctor finally arrived (after an hour

> wait) he brought with him 5 different people including the person

> who represents the company who makes the helmets. I felt like our

> doctor had already diagnosed our son without even examining him.

I

> had this overwhelming feeling that this was just a medical

> conspiracy! Has anyone else felt this? This doctor heavily

> recommended the helmet but made it clear that it would be purely

> cosmetic....

This is not a medical conspiracy, I too had similar concerns about

that when first going thru this with my daughter several yrs ago!!

Do you know what type of band or helmet the Dr is recommending?

>

> So, I ask this question. Who would decide not to use the helmet?

> Every time I even consider not doing it, I think about the guilt I

> will have down the road if my son's head ends up flat. Is there

> anyone out there who opted not to do the helmet? How did things

> turn out?

Many in our group have used a helmet or a band to correct our

child's headshape. I think you've really answered your own question

by saying you think about the guilt if you don't band him and he

stays flat. Are you willing to risk not addt'l correction over

time? Would you be happy 5 yrs from now IF Zane's headshape

remained then as it is now? If so, then perhaps all is well, but if

not (again you already mentioned the guilt if not) then I'd

definitely pursue the helmet.

I can tell you, we did band our daughter, she graduated at age 15.5

mos with good correction, although not 100% of her severe plagio..

She's now just over age 4, and unfortunately, her headshape has not

rounded any more AFTER her DOCband I SO wish it would've, but

unfortunately, it did not.

>

> Also, our helmet provider is telling us it will run about $3500

and

> he'll have to wear it about 4-6 months. Is this correct? And, of

> course, there will be no help with insurance. I'm very frustrated

> and angry.

What type of insurance do you have?? Please don't throw in the

towel on insurance covg so soon! SOO many group members have had to

fight & appeal many times to receive coverage, it might take a lot

of phone calls, paperwork & headahces, but really, FIGHT FIGHT

FIGHT!!!

And again, what helmet or band were you referred to? Where do you

live?

AVERAGE treatment time is 4.5 mos or so. But there's really no way

you can predict how long he'll be banded. It depends on the child's

age, plagio severity and growth spurts. The younger the child

(normally under 6 mos) the faster the correction will be,

the " older " the child, their head growth isn't as rapid as a younger

infant, but they're still growing well.

I can see that Zane has a flat spot on his head but will

> the helmet really help? And, if it does help the shape, what will

> it do to the wonderful disposition that he now has. He is a

> wonderfully happy little boy! I don't want that to change.

Oh these helmets are really amazing and it should most definitely

correct his headshape!!! Don't worry. Please, take a look at our

PHOTOS section, " BEfore & After " pictures, you'll see first hand how

well these bands work.

Also, I've been here a long time now, and it's very rare for a child

to be bothered at all by their helmets. Most babies adjust

immediately and go about their happy little lives, even sleep just

fine in it. My daughter didn't mind for one second!!!

Good luck, please keep us posted.

Debbie Abby's mom DOCGrad

MI

[Guest guest]

Hi ,

Welcome to the group! I see you already got some great info! My

daughter was dx w/plagio by a neurosurgeon who did recommend the

helmet as well, and we did meet with the orthos in that hospital

(Boston's Children's) the same day. Where are you located? If you

didn't feel comfortable with the people you met with, there may be

other options in your area. I contacted three different places and

ended up choosing one of the places not affiliated with the

hospital. These helmets, when in the hands of an experienced ortho,

do wonders! Our daughter was severe and is now in her third helmet

and she looks amazing compared to where we started. How did they

rate Zane's severity? Did you agree with their assessment? There

are assessment forms in our links section. You really have to make

your decision based on Zane's head staying as is, as nobody can tell

you if it will improve on its own. How long he'd have to wear it

depends on the type of helmet, his age, and how fast he grows once

he gets it. Also, if you browse our links and files sections, you

can see that plagio isn't simply cosmetic. If you check out my

Hannah's photo folder you can read a letter my neuro wrote for our

insurance company stating the possible side effects of not treating

it. We were successful with our insurance, as many people are. The

cost they gave you is within the range that I've heard. Oh, and as

long as you get someone experienced and have a good fitting helmet,

Zane will barely even notice it's there. My Hannah is now 17 mos

and she is capable of taking her band off, but only does very

occassionally for an itch! She got her fist band at 4 mos and

learned to roll over the very next day. It has never slowed her

down or affected her disposition in any way. Please keep us updated.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " karenbicak " <karenbicak@y...>

wrote:

> I am new to all of this. Our son was diagnosed with tort about 8

> weeks ago. We have been in pt and are seeing some improvement in

> range of motion. However, we just finally got in to see the

> craniofacial specialist today. It was the strangest doctor visit

I

> have ever been in. When the doctor finally arrived (after an hour

> wait) he brought with him 5 different people including the person

> who represents the company who makes the helmets. I felt like our

> doctor had already diagnosed our son without even examining him.

I

> had this overwhelming feeling that this was just a medical

> conspiracy! Has anyone else felt this? This doctor heavily

> recommended the helmet but made it clear that it would be purely

> cosmetic....

>

> So, I ask this question. Who would decide not to use the helmet?

> Every time I even consider not doing it, I think about the guilt I

> will have down the road if my son's head ends up flat. Is there

> anyone out there who opted not to do the helmet? How did things

> turn out?

>

> Also, our helmet provider is telling us it will run about $3500

and

> he'll have to wear it about 4-6 months. Is this correct? And, of

> course, there will be no help with insurance. I'm very frustrated

> and angry. I can see that Zane has a flat spot on his head but

will

> the helmet really help? And, if it does help the shape, what will

> it do to the wonderful disposition that he now has. He is a

> wonderfully happy little boy! I don't want that to change.

>

> Looking for answers and support.

>

> Zane's mommy,

[Guest guest]

,

Your craniofacial specialist appt. does sound strange with the

presence of a full " panel " including a company helmet rep. However,

don't let that deter you one bit from getting Zane a helmet to

correct his plagio! I know that some specialists do develop a

relationship or comfort level with one particular company or brand,

but just know that there are many, many different brands and designs

out there from which to choose. Do you know what choices of

different types of bands/helmets you have available in your

geographic area? Did your specialist write a prescription

generically for a helmet/band, or for a specific brand? What brand

of band did the specialist recommend? We probably have group

members here that have some experience with them, and can give you

some feedback. There need not be the feeling of a " medical

conspiracy " if you actively research your options and make your

choice! I'm not particularly fond of that appt. tactic you had, but

I have to admit that the orthotists seem more educated about

severity assessment and estimation of correction from their own

product than the specialists do sometimes. I don't know which

company rep you had, but I have read posts that Cranial Tech has

actually turned babies down that were too mild, so please don't feel

that it is some big sales scam! These helmets and bands can really

work wonders; just take a look at the photos/before and after folder!

We are an example of parents who chose not to use a helmet or band.

Our reasons were that we were seeing dramatic continued improvement

with aggressive repositioning. Also, Remy had no facial asymmetry,

forehead bossing, or ear misalignment. In addition, she had no

tort, which would have seriously undermined repo efforts and

threatened regression.

Regarding insurance, there is light at the end of the tunnel! Many

parents fiercely appeal denials, with success! We have insurance

appeal information resources right here at the site. What insurance

company do you have?

I hope we can help!

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " karenbicak " <karenbicak@y...>

wrote:

> I am new to all of this. Our son was diagnosed with tort about 8

> weeks ago. We have been in pt and are seeing some improvement in

> range of motion. However, we just finally got in to see the

> craniofacial specialist today. It was the strangest doctor visit

I

> have ever been in. When the doctor finally arrived (after an hour

> wait) he brought with him 5 different people including the person

> who represents the company who makes the helmets. I felt like our

> doctor had already diagnosed our son without even examining him.

I

> had this overwhelming feeling that this was just a medical

> conspiracy! Has anyone else felt this? This doctor heavily

> recommended the helmet but made it clear that it would be purely

> cosmetic....

>

> So, I ask this question. Who would decide not to use the helmet?

> Every time I even consider not doing it, I think about the guilt I

> will have down the road if my son's head ends up flat. Is there

> anyone out there who opted not to do the helmet? How did things

> turn out?

>

> Also, our helmet provider is telling us it will run about $3500

and

> he'll have to wear it about 4-6 months. Is this correct? And, of

> course, there will be no help with insurance. I'm very frustrated

> and angry. I can see that Zane has a flat spot on his head but

will

> the helmet really help? And, if it does help the shape, what will

> it do to the wonderful disposition that he now has. He is a

> wonderfully happy little boy! I don't want that to change.

>

> Looking for answers and support.

>

> Zane's mommy,

[Guest guest]

Now that this has had a day to sink in, I'm recovering from the

shock. I'm not sure about helmet type or brand, I think it was a

star band. Quite honestly, I put all of the documentation on the

kitchen counter and haven't gone back to it. I needed time to

process.

I have taken a look at some before and after pictures on the site

and it is incredible. I plan to post some before pix of Zane.

Honestly, I don't think his is that severe. I can see a flat spot

but to my eye it doesn't appear that bad. Of course, I am biased.

He's my baby. I would love to know your opinion if you get a

chance to look.

I will do some reading and research and look into what helmets/bands

are available in our area. As far as I can tell, there are a couple

companies here in this region. So, we'll see what we can do. We

also plan to fight for insurance coverage and this website seems

like a great source for all kinds of information.

It's also great comfort to know we're not alone!

Thanks for your help.

> > I am new to all of this. Our son was diagnosed with tort about

8

> > weeks ago. We have been in pt and are seeing some improvement

in

> > range of motion. However, we just finally got in to see the

> > craniofacial specialist today. It was the strangest doctor

visit

> I

> > have ever been in. When the doctor finally arrived (after an

hour

> > wait) he brought with him 5 different people including the

person

> > who represents the company who makes the helmets. I felt like

our

> > doctor had already diagnosed our son without even examining

him.

> I

> > had this overwhelming feeling that this was just a medical

> > conspiracy! Has anyone else felt this? This doctor heavily

> > recommended the helmet but made it clear that it would be purely

> > cosmetic....

> >

> > So, I ask this question. Who would decide not to use the

helmet?

> > Every time I even consider not doing it, I think about the guilt

I

> > will have down the road if my son's head ends up flat. Is there

> > anyone out there who opted not to do the helmet? How did things

> > turn out?

> >

> > Also, our helmet provider is telling us it will run about $3500

> and

> > he'll have to wear it about 4-6 months. Is this correct? And,

of

> > course, there will be no help with insurance. I'm very

frustrated

> > and angry. I can see that Zane has a flat spot on his head but

> will

> > the helmet really help? And, if it does help the shape, what

will

> > it do to the wonderful disposition that he now has. He is a

> > wonderfully happy little boy! I don't want that to change.

> >

> > Looking for answers and support.

> >

> > Zane's mommy,