Re: My son has just been diagnosed with Plagio.

July 1, 2006

Hello !

Welcome to the group. Not to worry, you are among so many other

parents who have been through and are going through the same thing you

are.

Many babies get referred to a specialist for a formal plagiocephaly

diagnosis, but some also just get the diagnosis from the pediatrician.

Sometimes the specialist will want to rule out a very rare but

serious problem that involves one or more sutures closing early. This

very rare condition is called craniosynostosis, and presents with a

deformation of the skull as well. When we took our daughter to the

pediatric neuro, he diagnosed plagiocephaly on sight without any

tests. Other specialists might have other protocols.

Here are some questions that you might want to write down or print out

to take with you when you see the specialist:

Cranial Tech's Questions to Ask the Doctor or Orthotist:

The quality of treatment available varies widely for children with

plagiocephaly. One way to avoid pitfalls is to be aware of them. Print

this page and use it for your research.

http://www.cranialtech.com/Treatment/selecting.html

Questions To Ask The Doctor and Orthotist/Clinician

Once an official diagnosis is made and a course of treatment is

planned, many children are referred to an Orthotist or Treatment

Facility in order to obtain cranial orthosis. Here is a list of

questions to ask the Orthotist/Clinician.

http://www.cappskids.org/QuestionsForTheDoctorAndOrthotist.htm

Questions for the Doctor

It is important to ask any questions that concern you. WRITE DOWN the

questions you want to ask, and take a pen (or a mini tape recorder)

with you so you can write down the answers given. Here are some

suggested questions for you doctor and/or orthotist. Please feel free

to print this page...

http://www.plagiocephaly.org/support/questions.htm

You will find a wide swath of opinions about band treatment for plagio

(when to do it, how severe it has to be to do it, etc.) AAP

guidelines say that babies whose plagio is severe, or is resistant to

repo efforts should consider the band option. Usually treatment

choice boils down to what the parent ulimately wants to do. Studies

out there show that some babies round out to normal, some round out to

a degree but not to normal, and some never round out. It is

impossible to know whether your baby will be one of the lucky ones, so

it might be advisable to keep that in mind if a doctor tells you your

baby WILL round out. How old is your baby? Have you already tried

aggressive repositioning? I would be happy to help with whatever

information I can.

You will need a prescription for the band if you decide to go that

route. Where are you located? We may have some other group members

near where you are that can give you some insight into band options in

your neck of the woods. Price ranges from $600 for an off-the-shelf

helmet only available in NC, to $3500 or so. The average cost for

treatment might be $2500 - $3000. Many people have had their bands

covered by insurance, or have procured coverage with persistant

appeals to their insurance. It might behoove you to check into your

policy. We have a help document created by one of our moderators that

provides the coding and language you will need when you call your

insurance to check on coverage. The document is titled " 1st step for

insurance " and is in the Files/Insurance help folder.

Considering a band or helmet can seem scary at first, but the babies

tolerate them so well, and look beyond adorable in their decorated

bands. They do work, and have worked for many, many babies here.

Will you let me know if you have any concerns I can help with?

Take care,

Christie (Mom to Repo'd Remy)

>

> I hoping that this website will bring a lot of advice to my husband and

> I. Our pediatrician just recommended us to visit a plastic surgeon.

> He believes that our son has the signs of plagiocephaly. This is very

> scary. Not knowing what to expect and to make sure that we make the

> correct decision. We have met with another pediatrician who thinks

> that it will get better on its own. Does anyone know the cost involved

> with this therapy? Any other advice would be greatly appreciated. Our

> son is 4 months old.

>

> Thanks,

>

July 3, 2006

Hi there, welcome to the group. Many parents are told by

pediatricians that it will round out on it's own only to find out

that's not true for their child. If your son has torticollis it is

even more likely that it will not round out on it's own. The

plastic surgeon you are seeing should be able to tell you if he has

torticollis (as long as they are knowledegable about it).

Aggressive repositioning can be effective for some children and

there is some great information about that in our files section

here. I think that 4 months is a pretty good age for

repositioning. You have a much better chance with repositioning

than you do just waiting for it to correct on it's own.

Haylee

mom to Andre 22 months tort/doc band #1 22/11/05 doc band #2 21/6/06

& Lesly 22 months

>

> I hoping that this website will bring a lot of advice to my

husband and

> I. Our pediatrician just recommended us to visit a plastic

surgeon.

> He believes that our son has the signs of plagiocephaly. This is

very

> scary. Not knowing what to expect and to make sure that we make

the

> correct decision. We have met with another pediatrician who

thinks

> that it will get better on its own. Does anyone know the cost

involved

> with this therapy? Any other advice would be greatly

appreciated. Our

> son is 4 months old.

>

> Thanks,

>

July 3, 2006

Thank you so much for all the information. It is definitely a scary process

to start, but with the help of the support group. I am sure that we will be

fine!

>From: " redlocks2003 " <clkline@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: My son has just been diagnosed with Plagio.

>Date: Sat, 01 Jul 2006 21:50:36 -0000

>

>Hello !

>

>Welcome to the group. Not to worry, you are among so many other

>parents who have been through and are going through the same thing you

>are.

>

>Many babies get referred to a specialist for a formal plagiocephaly

>diagnosis, but some also just get the diagnosis from the pediatrician.

> Sometimes the specialist will want to rule out a very rare but

>serious problem that involves one or more sutures closing early. This

>very rare condition is called craniosynostosis, and presents with a

>deformation of the skull as well. When we took our daughter to the

>pediatric neuro, he diagnosed plagiocephaly on sight without any

>tests. Other specialists might have other protocols.

>

>Here are some questions that you might want to write down or print out

>to take with you when you see the specialist:

>

>Cranial Tech's Questions to Ask the Doctor or Orthotist:

>The quality of treatment available varies widely for children with

>plagiocephaly. One way to avoid pitfalls is to be aware of them. Print

>this page and use it for your research.

>http://www.cranialtech.com/Treatment/selecting.html

>

>Questions To Ask The Doctor and Orthotist/Clinician

>Once an official diagnosis is made and a course of treatment is

>planned, many children are referred to an Orthotist or Treatment

>Facility in order to obtain cranial orthosis. Here is a list of

>questions to ask the Orthotist/Clinician.

>http://www.cappskids.org/QuestionsForTheDoctorAndOrthotist.htm

>

>Questions for the Doctor

>It is important to ask any questions that concern you. WRITE DOWN the

>questions you want to ask, and take a pen (or a mini tape recorder)

>with you so you can write down the answers given. Here are some

>suggested questions for you doctor and/or orthotist. Please feel free

>to print this page...

>http://www.plagiocephaly.org/support/questions.htm

>

>You will find a wide swath of opinions about band treatment for plagio

>(when to do it, how severe it has to be to do it, etc.) AAP

>guidelines say that babies whose plagio is severe, or is resistant to

>repo efforts should consider the band option. Usually treatment

>choice boils down to what the parent ulimately wants to do. Studies

>out there show that some babies round out to normal, some round out to

>a degree but not to normal, and some never round out. It is

>impossible to know whether your baby will be one of the lucky ones, so

>it might be advisable to keep that in mind if a doctor tells you your

>baby WILL round out. How old is your baby? Have you already tried

>aggressive repositioning? I would be happy to help with whatever

>information I can.

>

>You will need a prescription for the band if you decide to go that

>route. Where are you located? We may have some other group members

>near where you are that can give you some insight into band options in

>your neck of the woods. Price ranges from $600 for an off-the-shelf

>helmet only available in NC, to $3500 or so. The average cost for

>treatment might be $2500 - $3000. Many people have had their bands

>covered by insurance, or have procured coverage with persistant

>appeals to their insurance. It might behoove you to check into your

>policy. We have a help document created by one of our moderators that

>provides the coding and language you will need when you call your

>insurance to check on coverage. The document is titled " 1st step for

>insurance " and is in the Files/Insurance help folder.

>

>Considering a band or helmet can seem scary at first, but the babies

>tolerate them so well, and look beyond adorable in their decorated

>bands. They do work, and have worked for many, many babies here.

>

>Will you let me know if you have any concerns I can help with?

>

>Take care,

>

>Christie (Mom to Repo'd Remy)

>

> >

> > I hoping that this website will bring a lot of advice to my husband and

> > I. Our pediatrician just recommended us to visit a plastic surgeon.

> > He believes that our son has the signs of plagiocephaly. This is very

> > scary. Not knowing what to expect and to make sure that we make the

> > correct decision. We have met with another pediatrician who thinks

> > that it will get better on its own. Does anyone know the cost involved

> > with this therapy? Any other advice would be greatly appreciated. Our

> > son is 4 months old.

> >

> > Thanks,

> >

>

_________________________________________________________________

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July 3, 2006

Thank you for the advice. We have been repositioning like crazy! We are

hoping that it will start correcting itself by the time our appointment on

the 7/27/2006. Was it a hard adjustment for your child to start sleeping

with the band?

>From: " haylee204 " <rascle204@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: My son has just been diagnosed with Plagio.

>Date: Mon, 03 Jul 2006 04:02:42 -0000

>

>Hi there, welcome to the group. Many parents are told by

>pediatricians that it will round out on it's own only to find out

>that's not true for their child. If your son has torticollis it is

>even more likely that it will not round out on it's own. The

>plastic surgeon you are seeing should be able to tell you if he has

>torticollis (as long as they are knowledegable about it).

>Aggressive repositioning can be effective for some children and

>there is some great information about that in our files section

>here. I think that 4 months is a pretty good age for

>repositioning. You have a much better chance with repositioning

>than you do just waiting for it to correct on it's own.

>

>Haylee

>mom to Andre 22 months tort/doc band #1 22/11/05 doc band #2 21/6/06

> & Lesly 22 months

>

> >

> > I hoping that this website will bring a lot of advice to my

>husband and

> > I. Our pediatrician just recommended us to visit a plastic

>surgeon.

> > He believes that our son has the signs of plagiocephaly. This is

>very

> > scary. Not knowing what to expect and to make sure that we make

>the

> > correct decision. We have met with another pediatrician who

>thinks

> > that it will get better on its own. Does anyone know the cost

>involved

> > with this therapy? Any other advice would be greatly

>appreciated. Our

> > son is 4 months old.

> >

> > Thanks,

> >

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

July 12, 2006

Hello

Welcome to the board. Your son is at an awesome age to receive good

correction. Aggressive repo might be all that it will take. I

would set myself a time limit and go from there. Take wkly pictures

so that you can evaluate the progress and see that he is actually

rounding out. As far as this just going away I would have to say

that it was not the case for my daughter Willow which was banded

from 6months of age to the age of 9months.

The cost really depends. I've known some bands to be as little as

$1500.00 and ours was a little over $4000. I can't remember the

exact amount.

I would go ahead and get the eval from the plastic surg and go from

there while you do repo

Sandy Willow's mom

Tort resolved 02/04

Cranio Germany Grad 02/04

>

> I hoping that this website will bring a lot of advice to my

husband and

> I. Our pediatrician just recommended us to visit a plastic

surgeon.

> He believes that our son has the signs of plagiocephaly. This is

very

> scary. Not knowing what to expect and to make sure that we make

the

> correct decision. We have met with another pediatrician who

thinks

> that it will get better on its own. Does anyone know the cost

involved

> with this therapy? Any other advice would be greatly

appreciated. Our

> son is 4 months old.

>

> Thanks,

>

July 27, 2006

>

,

If your're seriously worried about your son, I would do the

consultation with the plastic surgeon. Remember, it's just a

consultation, meant to answer your questions. Our son has plagio and

just received his DOC band last week at 8 months. Our pediatrician

told us it would correct itself when we asked at 2 months. Finally,

at 6 months he decided we should do the band and our son has to wear

it for 3 months. Had we started earlier when we started worrying, he

woudn't have to wear it for as long. Just something for you to

consider. It helps to talk to the doctor and know exactly what

you're getting into.

Good luck.

> I hoping that this website will bring a lot of advice to my husband

and

> I. Our pediatrician just recommended us to visit a plastic

surgeon.

> He believes that our son has the signs of plagiocephaly. This is

very

> scary. Not knowing what to expect and to make sure that we make

the

> correct decision. We have met with another pediatrician who thinks

> that it will get better on its own. Does anyone know the cost

involved

> with this therapy? Any other advice would be greatly appreciated.

Our

> son is 4 months old.

>

> Thanks,

>

July 27, 2006