Where to start?

[Guest guest]

Tammy,

Perhaps a good place to start would be the FAQ file in this group. That

will answer your basic questions. Also you need to read the

paper if you haven't already, at www.autism.com/ari.

The procedure for determining and doing heavy-metal detox (or chelation) is

(roughly) as follows--

1) Check out the symptoms in the paper and your child's possible exposure to

mercury through amalgam fillings, Rhogam injections to the Mom during

pregnancy, your number of fillings, his or her vaccinations, possible

environmental exposure. If you're pretty sure he's had major exposure

(vaccines are major), and he shows the symptoms, there's a good chance he's

mercury-poisoned.

2) If you want to, run a hair test from Doctor's Data Incorporated. After

you get the results, check them against Andy's " counting rules " which are in

the files. This will tell you if your child has the impaired mineral

transport through the hair that is indicative of mercury poisoning.

3) Decide if you want to do heavy metal detox on your child. If you can

find a cooperative doctor, great! Educate yourself on the best and safest

protocol, supplements that need to be given, possible testing etc. If you

can't find a doc, there are sources on this list for DMSA and tests that can

be ordered without a doc.

4) If your child has amalgam fillings, find a mercury-free dentist and get

them replaced. You cannot chelate with fillings in.

5) Then get started. We can help you with timing of cycles, basic protocol,

etc. There is a wealth of knowledge on this list, and lots of us who are

doing this with our kids, many for several years. Just ask questions, and

we'll do the best we can.

Barb

[ ] Where to start?

>I have just joined this board after visiting safeminds.com, which I

>heard about on a local radio station here in Atlanta. My son will be

>3 in August and was diagnosed with PDD/autism in December of last

>year. Since then we've been through a multitude of test (EEG, MRI, a

>couple of blood test...Chromosome & heavy metals), all of which have

>been normal or near normal (the MRI showed delayed melanation which

>we told was not a concern). I've been trying to read through the

>multitude of post, but find I am completely lost. Just the

>terminology is foreign to me. However, I've read enough that I am

>concerned and would like to become better educated on mercury link to

>autism. My question is, where should I start? Can anyone point me

>to a good place to get familiar with terminology...for example what

>is chelate? Should I ask for a " hair test " (whatever that is) even

>though his blood test for heavy metals was normal?

>

>If anyone can recommend a good site to get me started, I would really

>appreciate it.

>

>Thanks! Tammy

>

>

>=======================================================

>

[Guest guest]

>Should I ask for a " hair test " (whatever that is) even

> though his blood test for heavy metals was normal?

The first thing you should do is get the actual lab report in your

hands (ignore what the doc says - if he knew what he was doing, your

kid would be well already) and then look at the NUMBER, not the limits

the laboratory asserts as normal. For heavy metals, the limits are

contantly changing and all of them started from measurements of how

much poison stuff came out of people who worked with it in factories

and weren't dead yet. Not exactly " normal " in any sense you would

think of on your own.

Alternative labs actually DO use " normal limits " rather than some

moralistic number that says everyone is fine. A " normal limit " simply

means the level below which you find 97.5% of the healthy population

of that age and sex. This is the way all the lab tests like those

chem panels and CBC's the regular doc's find so useful are calibrated.

So get the NUMBERS off the test your doc already ran and see how they

look compared to the limits on a doctor's data or great smokies

report.

And remember, low levels in blood or urine don't mean he is OK - the

problem is with mercury (or whatever) in his BRAIN, and you aren't

about to let them cut a piece of that out and send it to the lab. You

just use blood and urine because it is OK to let the doc have some of

those and they might be informative.

>

> If anyone can recommend a good site to get me started, I would

really

> appreciate it.

[Guest guest]

Dear Tammy,

Welcome.

Yes, the mail on the list can be a bit daunting!

Have you read the FAQ? That might help some.

(The FAQ should have been sent to you when you joined.

Just in case it wasn't, you can find it here:

/files/Mercury-Autism%20FAQ

)

The FAQ is pretty useful.

I'll also point you to an article about mercury poisoning

which I think is a great intro to the subject. It covers

a lot of " basic stuff " . The one important caveat here is

that you should IGNORE their suggested chelation schedule.

(Uh-oh. I am actually rereading this article now, and they

are also wrong about suggesting " provoked " urine tests.

Oh well. Oh dear. Well, at least this article will introduce

some of the concepts. Take it all with a grain of salt.)

Okay: here is the link (2 part article):

http://www.vrpcentral.net/scripts/MoreNews.asp?ART=461

http://www.vrpcentral.net/scripts/MoreNews.asp?ART=471

I believe the above will include some sort of description of

what " chelate " means. My non-techie description would be:

chelate = to detox metal from the body

chelator = an agent that pulls a given metal (e.g. mercury) out

of the body.

That's rather inexact, but you get the idea. (The article I

just pointed you to is about mercury poisoning in general, and

not about autism.)

Another place you might want to poke around when you have

the time is the " files " area for this list, on the

website. Go to , log in, then select " my groups " ,

then select " autism treatment " . Click on the hyperlink " FILES "

on the left hand side. Or use this link:

/files/

(you will still have to log in). If you have the time to poke

further, try the BOOKMARKS and POLLS too. If you go to the

" messages " you can also do a " word search " (see the little

" search " box??)

Now, going back to the " completely lost " issue: I'm really with

you on this. I was VERY confused by reading the list and the

confusion lasted for quite

a good while. I used to keep a pad of paper by my computer with

lists of chelation agents --- it took weeks to sort out DMSA from

DMPS (those are both chelation agents) -- but eventually it

started making sense, and even being mostly " routine " . I would

suggest that you bear in mind that you don't need to understand

everything being discussed. Try to focus on what you want to

know or decide NOW. Let it all sort of sink in for a while.

And--- as you are already doing --- ask lots of questions.

The terminology thing is --well-- frustrating to me -- I hate

struggling over words or having anyone else do so. Could you

write down the confusing words and then send a list when you

have a few written down? That is, just write and ask what the

words mean every once in a while.

Oh, while I'm at it, regarding DMSA and DMPS, here is a hint:

almost everyone on this list who is doing chelation uses either

DMSA or ALA or both. There are some people doing other things

(homeopathics, cilantro, DMPS, etc.)--- but, at least judging

from the posts, the vast majority is DMSA or ALA or both.

I think you SHOULD get a hair test. Unless using Andy's advice

about the blood test leads to a clear conclusion that your son

has metal poisoning. If it is negative or unclear, I'd get a

hair test. Then you need to use " the counting rules " that you

will find in the FILES area (which I referred to above).

Hair tests and the counting rules are discussed all the time,

so if you just hang around here a while, you're bound to hear

more about that.

Finally, I think a reasonable proportion of the list owns and

uses on Andy's book, which you can buy if you wish, from:

hometown.aol.com/noamalgam. His book is (also) about mercury

poisoning, NOT about autism (or even about treating kids).

It's the best book around about chelation. There are a number

of other books about merc poisoning and dental amalgam etc.

Also, Andy is fairly techie about things, so I definately

skipped parts of his book. (On rereading I find different

parts of interest now.)

Oh! One more thing: this list has a really awesome and really

broad knowledge of mercury poisoning, chelation, autism, and

most anything related. So, although you don't know it yet,

I think you've stumbled onto a goldmine. Just my opinion ;]

Hope this is some help,

regards,

:] Moria

p.s. I have no kids--- but I'm the exception here, so PLEASE don't

feel " put off " . Being without an child w/autism/PDD/etc is a bit

of a liability in terms of welcoming new people like you....

But otherwise, not a problem -- I get a lot out of the list, and

consider it to be my " support group " for mercury detox.

I'm doing chelation on mySELF, using ALA only--- I just finished

my 9th " round " .

At 01:02 PM 7/4/2001 -0000, you wrote:

>I have just joined this board after visiting safeminds.com, which I

>heard about on a local radio station here in Atlanta. My son will be

>3 in August and was diagnosed with PDD/autism in December of last

>year. Since then we've been through a multitude of test (EEG, MRI, a

>couple of blood test...Chromosome & heavy metals), all of which have

>been normal or near normal (the MRI showed delayed melanation which

>we told was not a concern). I've been trying to read through the

>multitude of post, but find I am completely lost. Just the

>terminology is foreign to me. However, I've read enough that I am

>concerned and would like to become better educated on mercury link to

>autism. My question is, where should I start? Can anyone point me

>to a good place to get familiar with terminology...for example what

>is chelate? Should I ask for a " hair test " (whatever that is) even

>though his blood test for heavy metals was normal?

>

>If anyone can recommend a good site to get me started, I would really

>appreciate it.

>

>Thanks! Tammy

[Guest guest]

There will be a dosing sheet with your order that will explain how to

start enzymes and gradually increase the dose. I would start off

with just a half-dose with one meal the first day. Many people

prefer to start with one product and allow for adjustments to it

before adding in another products.

If you don't see the desired results with enzymes, you can work up to

the upper end of the recommended dosing, especially if your 13 year

old is a big eater. Big meals call for a bigger dose.

> We finally ordered our enzymes, and I'm wondering how much to start

> out on when they come. Our son with HFA is 13. I ordered Zyme

> Prime and the other main one (the one with the letters before it,

> but not the No Fenol.) Anyway, do I give him both to start? I see

> that many of you started out giving a fraction of a capsule. What

> was the indicator that let you know when to increase dosage?

>

>

[Guest guest]

Hello ,

Welcome to the group! I hope we can be of help. I just replied to

another new member with the same question as you... would you mind if

I copied and pasted part of my lengthy reply to her here for you as

well? If you have been trying repo for 2 months, with no results,

then your baby may be an excellent candidate for a band. Make sure

you mention to the plastic surgeon that you have already tried repo

for 2 months with no marked improvement.

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.

>

> Hello all,

>

> I am so glad I found this group...We are just getting started and are

> very new to the topic of plagio. We noticed our daughter's head

> deformity at around 2 months. The pediatricians told us with

> repositioning the problem would most likely go away. Here we are at 4

> months and yesterday a pediatrician referred us to a plastic surgeon

> for a second option and probably helmet therapy. We have been doing

> some research ourselves online but need help in determining what steps

> we should follow. Can anyone please help??

>

> I would so very much appreciate it!

>

> Emiy

>

[Guest guest]

Christie,

Thank you so much for responding. Just like (the other person with the same questions) I am also pretty scared and very concerned. I have been researching the topic since last night and am learning more and more. It is very helpful and reassuring to get feedback from you and other people who have gone through the same thing.

Unfortunately we have not tried agressive repo yet. We did a little here and there but stopped when our daughter would get upset because we were told it was not so bad. Also, when we would try to repo she would turn her head right back the other way. And I was so nervous about putting her in any other position than on her back because of the SIDS campaign.

However, we did get started immediately yesterday after receiving the news. No more bouncy seat, we actually bought a bumbo seat, limit car seat, increasing baby bjorn time and tummy time. Our daughter hates tummy time with a passion so we went out and bought a playmat with a raised pillow (surf mat). I am also placing her on her side for naps during the day.

I have contacted our insurance company to see if the helmet or DOC band is covered and they could not tell me. From reading other peoples stories and articles online it seems that the DOC band is the way to go. Since this is through an outside company my insurance probably will not cover it. I am with Kaiser (HMO) and they try to do everything within their own network. I will definitely check the insurance page you recommended. Thanks again so much for responding! How far along are you into this program? Is your little one responding well?

Take care,

On 7/2/06, redlocks2003 <clkline@...> wrote:

Hello ,Welcome to the group! I hope we can be of help. I just replied toanother new member with the same question as you... would you mind ifI copied and pasted part of my lengthy reply to her here for you as

well? If you have been trying repo for 2 months, with no results,then your baby may be an excellent candidate for a band. Make sureyou mention to the plastic surgeon that you have already tried repofor 2 months with no marked improvement. Many babies get referred to a specialist for a formal plagiocephalydiagnosis, but some also just get the diagnosis from the pediatrician.Sometimes the specialist will want to rule out a very rare butserious problem that involves one or more sutures closing early. This

very rare condition is called craniosynostosis, and presents with adeformation of the skull as well. When we took our daughter to thepediatric neuro, he diagnosed plagiocephaly on sight without anytests. Other specialists might have other protocols.

Here are some questions that you might want to write down or print outto 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. Printthis page and use it for your research.

http://www.cranialtech.com/Treatment/selecting.htmlQuestions To Ask The Doctor and Orthotist/ClinicianOnce an official diagnosis is made and a course of treatment isplanned, many children are referred to an Orthotist or Treatment

Facility in order to obtain cranial orthosis. Here is a list ofquestions to ask the Orthotist/Clinician.

http://www.cappskids.org/QuestionsForTheDoctorAndOrthotist.htmQuestions for the DoctorIt is important to ask any questions that concern you. WRITE DOWN thequestions 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 somesuggested questions for you doctor and/or orthotist. Please feel freeto print this page...

http://www.plagiocephaly.org/support/questions.htmYou 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.) AAPguidelines say that babies whose plagio is severe, or is resistant to

repo efforts should consider the band option. Usually treatmentchoice boils down to what the parent ulimately wants to do. Studiesout there show that some babies round out to normal, some round out toa 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, soit might be advisable to keep that in mind if a doctor tells you yourbaby WILL round out. How old is your baby? Have you already triedaggressive 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 thatroute. Where are you located? We may have some other group membersnear 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-shelfhelmet only available in NC, to $3500 or so. The average cost fortreatment might be $2500 - $3000. Many people have had their bandscovered by insurance, or have procured coverage with persistant

appeals to their insurance. It might behoove you to check into yourpolicy. We have a help document created by one of our moderators thatprovides the coding and language you will need when you call yourinsurance 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 babiestolerate them so well, and look beyond adorable in their decoratedbands. They do work, and have worked for many, many babies here.

>> Hello all,> > I am so glad I found this group...We are just getting started and are > very new to the topic of plagio. We noticed our daughter's head > deformity at around 2 months. The pediatricians told us with > repositioning the problem would most likely go away. Here we are at 4 > months and yesterday a pediatrician referred us to a plastic surgeon > for a second option and probably helmet therapy. We have been doing > some research ourselves online but need help in determining what steps > we should follow. Can anyone please help?? > > I would so very much appreciate it! > > Emiy>

[Guest guest]

-

Which Kaiser facility are you going to?

Molly

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of BehrmannSent: 1 July 2006 7:50 PMPlagiocephaly Subject: Re: Re: Where to start?

Christie,

Thank you so much for responding. Just like (the other person with the same questions) I am also pretty scared and very concerned. I have been researching the topic since last night and am learning more and more. It is very helpful and reassuring to get feedback from you and other people who have gone through the same thing.

Unfortunately we have not tried agressive repo yet. We did a little here and there but stopped when our daughter would get upset because we were told it was not so bad. Also, when we would try to repo she would turn her head right back the other way. And I was so nervous about putting her in any other position than on her back because of the SIDS campaign.

However, we did get started immediately yesterday after receiving the news. No more bouncy seat, we actually bought a bumbo seat, limit car seat, increasing baby bjorn time and tummy time. Our daughter hates tummy time with a passion so we went out and bought a playmat with a raised pillow (surf mat). I am also placing her on her side for naps during the day.

I have contacted our insurance company to see if the helmet or DOC band is covered and they could not tell me. From reading other peoples stories and articles online it seems that the DOC band is the way to go. Since this is through an outside company my insurance probably will not cover it. I am with Kaiser (HMO) and they try to do everything within their own network. I will definitely check the insurance page you recommended. Thanks again so much for responding! How far along are you into this program? Is your little one responding well?

Take care,

On 7/2/06, redlocks2003 <clkline@...> wrote:

Hello ,Welcome to the group! I hope we can be of help. I just replied toanother new member with the same question as you... would you mind ifI copied and pasted part of my lengthy reply to her here for you as well? If you have been trying repo for 2 months, with no results,then your baby may be an excellent candidate for a band. Make sureyou mention to the plastic surgeon that you have already tried repofor 2 months with no marked improvement. Many babies get referred to a specialist for a formal plagiocephalydiagnosis, but some also just get the diagnosis from the pediatrician.Sometimes the specialist will want to rule out a very rare butserious problem that involves one or more sutures closing early. This very rare condition is called craniosynostosis, and presents with adeformation of the skull as well. When we took our daughter to thepediatric neuro, he diagnosed plagiocephaly on sight without anytests. Other specialists might have other protocols. Here are some questions that you might want to write down or print outto 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. Printthis page and use it for your research.http://www.cranialtech.com/Treatment/selecting.htmlQuestions To Ask The Doctor and Orthotist/ClinicianOnce an official diagnosis is made and a course of treatment isplanned, many children are referred to an Orthotist or Treatment Facility in order to obtain cranial orthosis. Here is a list ofquestions to ask the Orthotist/Clinician.http://www.cappskids.org/QuestionsForTheDoctorAndOrthotist.htmQuestions for the DoctorIt is important to ask any questions that concern you. WRITE DOWN thequestions 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 somesuggested questions for you doctor and/or orthotist. Please feel freeto print this page...http://www.plagiocephaly.org/support/questions.htmYou 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.) AAPguidelines say that babies whose plagio is severe, or is resistant to repo efforts should consider the band option. Usually treatmentchoice boils down to what the parent ulimately wants to do. Studiesout there show that some babies round out to normal, some round out toa 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, soit might be advisable to keep that in mind if a doctor tells you yourbaby WILL round out. How old is your baby? Have you already triedaggressive 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 thatroute. Where are you located? We may have some other group membersnear 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-shelfhelmet only available in NC, to $3500 or so. The average cost fortreatment might be $2500 - $3000. Many people have had their bandscovered by insurance, or have procured coverage with persistant appeals to their insurance. It might behoove you to check into yourpolicy. We have a help document created by one of our moderators thatprovides the coding and language you will need when you call yourinsurance 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 babiestolerate them so well, and look beyond adorable in their decoratedbands. They do work, and have worked for many, many babies here. >> Hello all,> > I am so glad I found this group...We are just getting started and are > very new to the topic of plagio. We noticed our daughter's head > deformity at around 2 months. The pediatricians told us with > repositioning the problem would most likely go away. Here we are at 4 > months and yesterday a pediatrician referred us to a plastic surgeon > for a second option and probably helmet therapy. We have been doing > some research ourselves online but need help in determining what steps > we should follow. Can anyone please help?? > > I would so very much appreciate it! > > Emiy>

[Guest guest]

One more thing....what is a bumbo seat and where can I get one?

>From: " Behrmann " <emilybehrmann@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Re: Where to start?

>Date: Sun, 2 Jul 2006 04:49:31 +0200

>

>Christie,

>

>Thank you so much for responding. Just like (the other person with

>the same questions) I am also pretty scared and very concerned. I have been

>researching the topic since last night and am learning more and more. It is

>very helpful and reassuring to get feedback from you and other people who

>have gone through the same thing.

>

>Unfortunately we have not tried agressive repo yet. We did a little here

>and

>there but stopped when our daughter would get upset because we were told it

>was not so bad. Also, when we would try to repo she would turn her head

>right back the other way. And I was so nervous about putting her in any

>other position than on her back because of the SIDS campaign.

>

>However, we did get started immediately yesterday after receiving the news.

>No more bouncy seat, we actually bought a bumbo seat, limit car seat,

>increasing baby bjorn time and tummy time. Our daughter hates tummy time

>with a passion so we went out and bought a playmat with a raised pillow

>(surf mat). I am also placing her on her side for naps during the day.

>

>I have contacted our insurance company to see if the helmet or DOC band is

>covered and they could not tell me. From reading other peoples stories and

>articles online it seems that the DOC band is the way to go. Since this is

>through an outside company my insurance probably will not cover it. I am

>with Kaiser (HMO) and they try to do everything within their own network. I

>will definitely check the insurance page you recommended. Thanks again so

>much for responding! How far along are you into this program? Is your

>little

>one responding well?

>

>Take care,

>

>

>

>On 7/2/06, redlocks2003 <clkline@...> wrote:

>>

>> Hello ,

>>

>>Welcome to the group! I hope we can be of help. I just replied to

>>another new member with the same question as you... would you mind if

>>I copied and pasted part of my lengthy reply to her here for you as

>>well? If you have been trying repo for 2 months, with no results,

>>then your baby may be an excellent candidate for a band. Make sure

>>you mention to the plastic surgeon that you have already tried repo

>>for 2 months with no marked improvement.

>>

>>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.

>>

>>

>> >

>> > Hello all,

>> >

>> > I am so glad I found this group...We are just getting started and are

>> > very new to the topic of plagio. We noticed our daughter's head

>> > deformity at around 2 months. The pediatricians told us with

>> > repositioning the problem would most likely go away. Here we are at 4

>> > months and yesterday a pediatrician referred us to a plastic surgeon

>> > for a second option and probably helmet therapy. We have been doing

>> > some research ourselves online but need help in determining what steps

>> > we should follow. Can anyone please help??

>> >

>> > I would so very much appreciate it!

>> >

>> > Emiy

>> >

>>

>>

>>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

www.bumboseat.com

know they also sell them in catalogues.

Thanks and have a great day,

aleyfamily@...

Re: Re: Where to start?

>Date: Sun, 2 Jul 2006 04:49:31 +0200

>

>Christie,

>

>Thank you so much for responding. Just like (the other person with

>the same questions) I am also pretty scared and very concerned. I have been

>researching the topic since last night and am learning more and more. It is

>very helpful and reassuring to get feedback from you and other people who

>have gone through the same thing.

>

>Unfortunately we have not tried agressive repo yet. We did a little here

>and

>there but stopped when our daughter would get upset because we were told it

>was not so bad. Also, when we would try to repo she would turn her head

>right back the other way. And I was so nervous about putting her in any

>other position than on her back because of the SIDS campaign.

>

>However, we did get started immediately yesterday after receiving the news.

>No more bouncy seat, we actually bought a bumbo seat, limit car seat,

>increasing baby bjorn time and tummy time. Our daughter hates tummy time

>with a passion so we went out and bought a playmat with a raised pillow

>(surf mat). I am also placing her on her side for naps during the day.

>

>I have contacted our insurance company to see if the helmet or DOC band is

>covered and they could not tell me. From reading other peoples stories and

>articles online it seems that the DOC band is the way to go. Since this is

>through an outside company my insurance probably will not cover it. I am

>with Kaiser (HMO) and they try to do everything within their own network. I

>will definitely check the insurance page you recommended. Thanks again so

>much for responding! How far along are you into this program? Is your

>little

>one responding well?

>

>Take care,

>

>

>

>On 7/2/06, redlocks2003 <clkline@...> wrote:

>>

>> Hello ,

>>

>>Welcome to the group! I hope we can be of help. I just replied to

>>another new member with the same question as you... would you mind if

>>I copied and pasted part of my lengthy reply to her here for you as

>>well? If you have been trying repo for 2 months, with no results,

>>then your baby may be an excellent candidate for a band. Make sure

>>you mention to the plastic surgeon that you have already tried repo

>>for 2 months with no marked improvement.

>>

>>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.

>>

>>

>> >

>> > Hello all,

>> >

>> > I am so glad I found this group...We are just getting started and are

>> > very new to the topic of plagio. We noticed our daughter's head

>> > deformity at around 2 months. The pediatricians told us with

>> > repositioning the problem would most likely go away. Here we are at 4

>> > months and yesterday a pediatrician referred us to a plastic surgeon

>> > for a second option and probably helmet therapy. We have been doing

>> > some research ourselves online but need help in determining what steps

>> > we should follow. Can anyone please help??

>> >

>> > I would so very much appreciate it!

>> >

>> > Emiy

>> >

>>

>>

>>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfeeR

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

For more plagio info

[Guest guest]

target and babys r us have them and we saw them for sale at the used kids clothing stores

On 7/3/06, and Aley <aleyfamily@...> wrote:

www.bumboseat.comknow they also sell them in catalogues.Thanks and have a great day,

aleyfamily@...

Re: Re: Where to start?>Date: Sun, 2 Jul 2006 04:49:31 +0200>>Christie,>>Thank you so much for responding. Just like (the other person with

>the same questions) I am also pretty scared and very concerned. I have been>researching the topic since last night and am learning more and more. It is>very helpful and reassuring to get feedback from you and other people who

>have gone through the same thing.>>Unfortunately we have not tried agressive repo yet. We did a little here >and>there but stopped when our daughter would get upset because we were told it

>was not so bad. Also, when we would try to repo she would turn her head>right back the other way. And I was so nervous about putting her in any>other position than on her back because of the SIDS campaign.

>>However, we did get started immediately yesterday after receiving the news.>No more bouncy seat, we actually bought a bumbo seat, limit car seat,>increasing baby bjorn time and tummy time. Our daughter hates tummy time

>with a passion so we went out and bought a playmat with a raised pillow>(surf mat). I am also placing her on her side for naps during the day.>>I have contacted our insurance company to see if the helmet or DOC band is

>covered and they could not tell me. From reading other peoples stories and>articles online it seems that the DOC band is the way to go. Since this is>through an outside company my insurance probably will not cover it. I am

>with Kaiser (HMO) and they try to do everything within their own network. I>will definitely check the insurance page you recommended. Thanks again so>much for responding! How far along are you into this program? Is your >little>one responding well?>>Take care,>>>>On 7/2/06, redlocks2003 <

clkline@...> wrote:>>>> Hello ,>>>>Welcome to the group! I hope we can be of help. I just replied to>>another new member with the same question as you... would you mind if

>>I copied and pasted part of my lengthy reply to her here for you as>>well? If you have been trying repo for 2 months, with no results,>>then your baby may be an excellent candidate for a band. Make sure

>>you mention to the plastic surgeon that you have already tried repo>>for 2 months with no marked improvement.>>>>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.

>>>>>> >>> > Hello all,>> >>> > I am so glad I found this group...We are just getting started and are

>> > very new to the topic of plagio. We noticed our daughter's head>> > deformity at around 2 months. The pediatricians told us with>> > repositioning the problem would most likely go away. Here we are at 4

>> > months and yesterday a pediatrician referred us to a plastic surgeon>> > for a second option and probably helmet therapy. We have been doing>> > some research ourselves online but need help in determining what steps

>> > we should follow. Can anyone please help??>> >>> > I would so very much appreciate it!>> >>> > Emiy>> >>>>>>>

__________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfeeR

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

For more plagio info

[Guest guest]

I got mine at Baby Depot.

On 7/3/06, and Aley <aleyfamily@...> wrote:

www.bumboseat.comknow they also sell them in catalogues.Thanks and have a great day,

aleyfamily@...

Re: Re: Where to start?>Date: Sun, 2 Jul 2006 04:49:31 +0200>>Christie,>>Thank you so much for responding. Just like (the other person with

>the same questions) I am also pretty scared and very concerned. I have been>researching the topic since last night and am learning more and more. It is>very helpful and reassuring to get feedback from you and other people who

>have gone through the same thing.>>Unfortunately we have not tried agressive repo yet. We did a little here >and>there but stopped when our daughter would get upset because we were told it

>was not so bad. Also, when we would try to repo she would turn her head>right back the other way. And I was so nervous about putting her in any>other position than on her back because of the SIDS campaign.

>>However, we did get started immediately yesterday after receiving the news.>No more bouncy seat, we actually bought a bumbo seat, limit car seat,>increasing baby bjorn time and tummy time. Our daughter hates tummy time

>with a passion so we went out and bought a playmat with a raised pillow>(surf mat). I am also placing her on her side for naps during the day.>>I have contacted our insurance company to see if the helmet or DOC band is

>covered and they could not tell me. From reading other peoples stories and>articles online it seems that the DOC band is the way to go. Since this is>through an outside company my insurance probably will not cover it. I am

>with Kaiser (HMO) and they try to do everything within their own network. I>will definitely check the insurance page you recommended. Thanks again so>much for responding! How far along are you into this program? Is your >little>one responding well?>>Take care,>>>>On 7/2/06, redlocks2003 <

clkline@...> wrote:>>>> Hello ,>>>>Welcome to the group! I hope we can be of help. I just replied to>>another new member with the same question as you... would you mind if

>>I copied and pasted part of my lengthy reply to her here for you as>>well? If you have been trying repo for 2 months, with no results,>>then your baby may be an excellent candidate for a band. Make sure

>>you mention to the plastic surgeon that you have already tried repo>>for 2 months with no marked improvement.>>>>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.

>>>>>> >>> > Hello all,>> >>> > I am so glad I found this group...We are just getting started and are

>> > very new to the topic of plagio. We noticed our daughter's head>> > deformity at around 2 months. The pediatricians told us with>> > repositioning the problem would most likely go away. Here we are at 4

>> > months and yesterday a pediatrician referred us to a plastic surgeon>> > for a second option and probably helmet therapy. We have been doing>> > some research ourselves online but need help in determining what steps

>> > we should follow. Can anyone please help??>> >>> > I would so very much appreciate it!>> >>> > Emiy>> >>>>>>>

__________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfeeR

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

For more plagio info

[Guest guest]

You were asking about Bumbo seats, they are wonderful. I purchased the two I have at Target, you may also want to try Babies r Us or even Ebay. They are about $40.00, but I felt that they were well worth the price for my twins who now at almost 10 months will not stay in them. We used them from about 4 months to 8 1/2 when they began to try to get out of them. Craig <ryan_denisecraig@...> wrote: One more thing....what is a bumbo seat and where can I get one?>From: " Behrmann" >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: Re: Where to start?>Date: Sun, 2 Jul 2006 04:49:31 +0200>>Christie,>>Thank you so much for responding. Just like (the other person with>the same

questions) I am also pretty scared and very concerned. I have been>researching the topic since last night and am learning more and more. It is>very helpful and reassuring to get feedback from you and other people who>have gone through the same thing.>>Unfortunately we have not tried agressive repo yet. We did a little here >and>there but stopped when our daughter would get upset because we were told it>was not so bad. Also, when we would try to repo she would turn her head>right back the other way. And I was so nervous about putting her in any>other position than on her back because of the SIDS campaign.>>However, we did get started immediately yesterday after receiving the news.>No more bouncy seat, we actually bought a bumbo seat, limit car seat,>increasing baby bjorn time and tummy time. Our daughter hates tummy time>with a passion so we went out and bought a playmat

with a raised pillow>(surf mat). I am also placing her on her side for naps during the day.>>I have contacted our insurance company to see if the helmet or DOC band is>covered and they could not tell me. From reading other peoples stories and>articles online it seems that the DOC band is the way to go. Since this is>through an outside company my insurance probably will not cover it. I am>with Kaiser (HMO) and they try to do everything within their own network. I>will definitely check the insurance page you recommended. Thanks again so>much for responding! How far along are you into this program? Is your >little>one responding well?>>Take care,>>>>On 7/2/06, redlocks2003 wrote:>>>> Hello ,>>>>Welcome to the group! I hope we can be of help. I just replied to>>another new

member with the same question as you... would you mind if>>I copied and pasted part of my lengthy reply to her here for you as>>well? If you have been trying repo for 2 months, with no results,>>then your baby may be an excellent candidate for a band. Make sure>>you mention to the plastic surgeon that you have already tried repo>>for 2 months with no marked improvement.>>>>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.>>>>>> >>> > Hello all,>> >>> > I am so glad I found this group...We are just getting started and are>>

> very new to the topic of plagio. We noticed our daughter's head>> > deformity at around 2 months. The pediatricians told us with>> > repositioning the problem would most likely go away. Here we are at 4>> > months and yesterday a pediatrician referred us to a plastic surgeon>> > for a second option and probably helmet therapy. We have been doing>> > some research ourselves online but need help in determining what steps>> > we should follow. Can anyone please help??>> >>> > I would so very much appreciate it!>> >>> > Emiy>> >>>>>>>_________________________________________________________________Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963------------------------

[Guest guest]

I am new also and all our Target stores in the area were out of

stock on the bumbo seat as well as our Babies R Us. I ended

up buying a new one on ebay for $39.95 including the shipping.

I think targets price was about $36 and by the time I figured

the tax and gas, the 39.95 seemed like a great price and I

could get it faster.

Re: Re: Where to start?

>>Date: Sun, 2 Jul 2006 04:49:31 +0200

>>

>>Christie,

>>

>>Thank you so much for responding. Just like (the other person with

>>the same questions) I am also pretty scared and very concerned. I have

>>been

>>researching the topic since last night and am learning more and more. It

>>is

>>very helpful and reassuring to get feedback from you and other people who

>>have gone through the same thing.

>>

>>Unfortunately we have not tried agressive repo yet. We did a little here

>>and

>>there but stopped when our daughter would get upset because we were told

>>it

>>was not so bad. Also, when we would try to repo she would turn her head

>>right back the other way. And I was so nervous about putting her in any

>>other position than on her back because of the SIDS campaign.

>>

>>However, we did get started immediately yesterday after receiving the

>>news.

>>No more bouncy seat, we actually bought a bumbo seat, limit car seat,

>>increasing baby bjorn time and tummy time. Our daughter hates tummy time

>>with a passion so we went out and bought a playmat with a raised pillow

>>(surf mat). I am also placing her on her side for naps during the day.

>>

>>I have contacted our insurance company to see if the helmet or DOC band is

>>covered and they could not tell me. From reading other peoples stories and

>>articles online it seems that the DOC band is the way to go. Since this is

>>through an outside company my insurance probably will not cover it. I am

>>with Kaiser (HMO) and they try to do everything within their own network.

>>I

>>will definitely check the insurance page you recommended. Thanks again so

>>much for responding! How far along are you into this program? Is your

>>little

>>one responding well?

>>

>>Take care,

>>

>>

>>

>>On 7/2/06, redlocks2003 <clkline@...> wrote:

>>>

>>> Hello ,

>>>

>>>Welcome to the group! I hope we can be of help. I just replied to

>>>another new member with the same question as you... would you mind if

>>>I copied and pasted part of my lengthy reply to her here for you as

>>>well? If you have been trying repo for 2 months, with no results,

>>>then your baby may be an excellent candidate for a band. Make sure

>>>you mention to the plastic surgeon that you have already tried repo

>>>for 2 months with no marked improvement.

>>>

>>>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.

>>>

>>>

>>> >

>>> > Hello all,

>>> >

>>> > I am so glad I found this group...We are just getting started and are

>>> > very new to the topic of plagio. We noticed our daughter's head

>>> > deformity at around 2 months. The pediatricians told us with

>>> > repositioning the problem would most likely go away. Here we are at 4

>>> > months and yesterday a pediatrician referred us to a plastic surgeon

>>> > for a second option and probably helmet therapy. We have been doing

>>> > some research ourselves online but need help in determining what steps

>>> > we should follow. Can anyone please help??

>>> >

>>> > I would so very much appreciate it!

>>> >

>>> > Emiy

>>> >

>>>

>>>

>>>

>

> _________________________________________________________________

> Is your PC infected? Get a FREE online computer virus scan from McAfee®

> Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

>

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hello

I think that getting the plagio evaluated is a good idea and cannot

hurt whether you decide to band or to repo. Till you get the

appointment I would def keep repositioning. Your daughter is def at

a great age to band if you decided to do that. Let us know how your

evaluation goes and what they say.

Sandy Willow's mom

Tort resolved 02/04

Cranio Germany Grad 02/04

>

> Hello all,

>

> I am so glad I found this group...We are just getting started and

are

> very new to the topic of plagio. We noticed our daughter's head

> deformity at around 2 months. The pediatricians told us with

> repositioning the problem would most likely go away. Here we are

at 4

> months and yesterday a pediatrician referred us to a plastic

surgeon

> for a second option and probably helmet therapy. We have been

doing

> some research ourselves online but need help in determining what

steps

> we should follow. Can anyone please help??

>

> I would so very much appreciate it!

>

> Emiy

>

[Guest guest]

Welcome to the group!

Here is the treatment center I know of in Alaska:

Northern Orthopedics, 4200 Lake Otis Pkwy., Suite 310, Anchorage, AK

99508

Masters (907) 561-1777

I'm not familiar with their reputation though. They offer treatment

with Starband; you can check it out on www.orthomerica.com

Also, surgery is for EXTREME cases. Your baby is only 5 months and

could have an excellent banding outcome starting this young.

Please ask questions.

Take care,

Natasha

>

> I am brand new to all of this. Our doctor told us today that our

> baby, Tara has plagiocephaly. she will be 5 months old in a week.

He

> told me we have a few options, and that helmet therapy was one of

> them, surgery was another. I have so many ?'s running through my

mind

> but have no idea how to form them to make sence. He said that

> depending on how bad the case is, is depending on if our insurance

> will cover it. we are a military family and live in Alaska. as you

> can probly guess, we are limited to everything it seems. any advice

i

> could be given would be greatly apriciated, and helpfull.

>

[Guest guest]

thanks for the info. anchorage is so much closer than i was

thinking i would have to go. thats only a 6 hour drive from

fairbanks. so, so much better than a 3-5 hour plane ride to seattle

or portland. If I had to i would chose portland. seattle may be

closer but vancouver, wa is home for my family and we could stay

with them eat their food and use their car. and they wouod be more

than willing to help out any way they could. we have some friends

down in anchorage that are willing to help out too if we needed to

stay over night. its so nice having people who are able/want to

help.

> >

> > I am brand new to all of this. Our doctor told us today that

our

> > baby, Tara has plagiocephaly. she will be 5 months old in a

week.

> He

> > told me we have a few options, and that helmet therapy was one

of

> > them, surgery was another. I have so many ?'s running through

my

> mind

> > but have no idea how to form them to make sence. He said that

> > depending on how bad the case is, is depending on if our

insurance

> > will cover it. we are a military family and live in Alaska. as

you

> > can probly guess, we are limited to everything it seems. any

advice

> i

> > could be given would be greatly apriciated, and helpfull.

> >

>

[Guest guest]

As far as I know you'll only need surgery if your child has

craniosynostisis (cranio). This is where the sutures in the skull

close early (they are usually open on babies until the head is done

growing). This is rare and not the cause of most plagio. A CT scan is

used if cranio is suspected to see if the sutures are open.

If it is just plagio then a helmet/band (terms are often used

interchangeabley) is used. This encourages the head to grow in the

flat areas and not to grow where it is already large. Plagio has two

main causes. 1st is position which means the baby just likes to lay on

the same side all the time, and that side eventually gets flat and

then the baby likes to sleep on it even more. The other is torticollis

(tort) where the muscles in one side of the neck are shorter

(sometimes because the baby didn't have enough room in the womb) and

then the baby is more comfortable facing in a certain direction. If

the baby has tort you will need physical therapy to stretch the

muscles plus the band to work on the head shape. If there is no tort

you just need the band.

Our daughter has brachy (flat in the back) and got a band at 5 mo. She

adjusted very well, and will probably wear it for 4 months total. If

Tara needs a helmet don't worry - she'll do great in it too. As for

the $ I think there are some organizations that provide assistence to

military families depending on income (someone else can probably

address this). You're starting early, so you should see great

improvement. Depending on her severity you can also try repositioning

her to keep her off the flat spot. Some people are successfuly with

repo only and never need a band.

This is a long note, and I'm not sure how much of this you already

know, so just ask more questions if you need to.

Good luck,

-christine

mom to sydney/7mo/starband 5-31-06

>

> I am brand new to all of this. Our doctor told us today that our

> baby, Tara has plagiocephaly. she will be 5 months old in a week. He

> told me we have a few options, and that helmet therapy was one of

> them, surgery was another. I have so many ?'s running through my mind

> but have no idea how to form them to make sence. He said that

> depending on how bad the case is, is depending on if our insurance

> will cover it. we are a military family and live in Alaska. as you

> can probly guess, we are limited to everything it seems. any advice i

> could be given would be greatly apriciated, and helpfull.

>

[Guest guest]

Im A single mom with six year old Autistic twins. They were born premature &

were both diagnosed with Autism at age 3. Ive been reading the daily postings

for abt a year now. The one thing i'm still not sure about is where to start as

far as allergy/immuniology testing?

At age six my children are potty trained w/occasional accident. They r in a

great school program w/ABA therapy, PT, OT & Speech. Everyone feels my children

are doing excellent & I agree but as their mom I question if i'm doing

everything I can for them. I asked my childrens peditrician & Pediatric

Neurotherapist(sp) doctor their opionin on a Autism treatment clinic in my area

& felt discouraged with their answers. I myself am terrified to put my children

through any kind of testing that has no guarantee in their treatment? Where do u

start?

[Guest guest]

Hi

Wow! It was amazing reading your post. It sounded like you were describing my 2

year 1 month old daughter exactly. Her SLP also believed that she has apraxia.

But not willing to definitively say so until she is more verbal. My daughter is

also a great signer and is her main method of communication. She even makes

sentences with her signs.She too was a very quiet baby/toddler and getting her

to mimic sounds has been an up hill battle. She also whispers not all but a few

of her words. Usually the new ones she has learnt, she begins whispering. She

also has only a handful of words, maybe 5. My daughter does have low muscle tone

and sensory issues. Her muscle tone has not however hampered her gross motor

skills, as she was an early walker and loves climbing and jumping.

All I do know is that you must give the fish oils a try. I have seen an amazing

difference in my daughter. She is not so quiet when she is taking them and has

learnt all 5 of her words since she has been on them. Before she was on them she

used to get words and lose them. She now is keeping the words that she is

learning. She also has a lot more word approximations now that she has been

taking the fish oils.

Definitely read The Late Talker it's brilliant.

Please keep me up to date with how things go with your daughter as our two girls

sound so similar.

Nikki

>

> Hi,

>

> My two year 4 month old's SLP believes that my daughter has apraxia. She is

not willing to definitively say that it what it is due to her age. I am not

sure where to start. I am finding the internet very contradictory and confusing

when it comes to what apraxia actually is. I have ordered The Late Talker book

but I haven't received/read it yet. What should I be doing to inform myself and

find the right treatment for my child?

>

> A little about my daughter... Great signer, she communicates primarily through

signs and gestures. She has been combining signs since she was 18 months old.

She is generally pretty quiet. She will babble/jargon some. She seems to have

a limited number of sounds that she can make and has difficulty mimicking

sounds. She whispers and mouths words a handful of which I can make out. She

can make sounds at a normal tone so I don't know why she whispers words. She has

said words once that she never said again. She has normal receptive language and

cognitive skills (maybe even precocious) and playskills. She has normal fine

and gross motor skills. She does not drool or have feeding issues. She has

normal muscle tone and is a great climber! She attends a regular preschool two

mornings a week and is doing fine there though she is really falling behind her

peers in speech.

>

> Any thoughts?

>