My daughter

[Guest guest]

Hi,

Welcome to the group. sure is a cutie! From the looks of the

pictures, I think her plagio is more moderate than mild. If she were

my daughter, I'd look into banding her. You can see facial asymmetry

much more easily by looking into a mirror. Hold her up to a mirror,

if she has facial asymmetry, you'll see it.

Are you near a Cranial Tech office? They will give you a free

evaluation, and tell you honestly if would benefit from a

band. You can check them out here

http://www.cranialtech.com

The decision to band or not is totally up to you. It is a hard

decision to make, we all know what you're going through.

The window of opportunity to correct plaigio isn't a big one, so time

is of the essence. The younger a baby is banded the better and faster

the correction.

You don't even need to see a specialist, you can get a script for a

band from your pediatrician, if you do decide to band. Where are you

located?

> Hello,

>

> I have been reading posts here for a few days and I would like to

> ask a few questions from the great people here. My daughter

> is 8 months old and has what I would call mild plagiocephaly. After

> we noticed her flat spot we began a repositioning regimen and it

did

> stop it from getting worse, but has not improved it. She was a

> premature birth and had some mild torticolis that has since gone

> away with therapy.

>

> does not have any facial asymmetry from the front that I can

> see but the back left side of her head is noticeably flat and it

> does seem to me that her face is slightly wider in front than it

> should be.

>

> Our doctor does not seem to be that concerned about her

> plagiocephaly but did give us a referral to the local children's

> hospital. The hospital told us flat out. " We do not treat

> plagiocephaly " . To get a helmet we would have to drive/fly to

> another city and pay for it ourselves as our insurance will

probably

> not cover it.

>

> I have posted several pictures of her in the photos section here. I

> would appreciate any opinions you might have. If she needs a helmet

> we will do it, regardless of the cost. Everyone who sees her seems

> to think that her hair will eventually cover it up, but nobody we

> know has any experience with this problem.

>

> Thank you so much for your help.

[Guest guest]

Hi and Welcome to the group!!! I would have to agree with

and . This decision is totally up to you and once you make a

decision either way, we all are here to back you up. I would also

like to agree with regarding her head looks more moderate than

mild. I would definitely get a second opinion.

Dustie, mom to , DOCGrad'03

> Hello,

>

> I have been reading posts here for a few days and I would like to

> ask a few questions from the great people here. My daughter

> is 8 months old and has what I would call mild plagiocephaly. After

> we noticed her flat spot we began a repositioning regimen and it

did

> stop it from getting worse, but has not improved it. She was a

> premature birth and had some mild torticolis that has since gone

> away with therapy.

>

> does not have any facial asymmetry from the front that I can

> see but the back left side of her head is noticeably flat and it

> does seem to me that her face is slightly wider in front than it

> should be.

>

> Our doctor does not seem to be that concerned about her

> plagiocephaly but did give us a referral to the local children's

> hospital. The hospital told us flat out. " We do not treat

> plagiocephaly " . To get a helmet we would have to drive/fly to

> another city and pay for it ourselves as our insurance will

probably

> not cover it.

>

> I have posted several pictures of her in the photos section here. I

> would appreciate any opinions you might have. If she needs a helmet

> we will do it, regardless of the cost. Everyone who sees her seems

> to think that her hair will eventually cover it up, but nobody we

> know has any experience with this problem.

>

> Thank you so much for your help.

[Guest guest]

My son will be 9 months old next week and we just recently made the decision to band. His case was mild to moderate and I did not see any facial assymetry and the peds and neurosurgeons were not recommending it (but the neurosurgeon said he'd give us a perscription if we wanted). It was a very difficult decision, but one thing I think helped us was going for the (free) consultation at cranial technologies (CT). They are really knowledgable and helpful there. Check out their web site: www.cranialtech.com. If you can get to a CT office, it's worth the trip.

They did show us how we could see some facial assymetry that we were missing. If you hold your index fingers (pointing down) in front of her ears and look down from the top you can see if the ears are lined up. To my surprise, one of 's ears was a bit more forward than the others. From their measurements they could identify other assymetry, but it was mild. They also showed us how to do stretches for his tort.

CT did say that it was not a severe case, and it really was up to us. My husband spend the next 2 days disussing it and basically it came down to the fact that really doesn't have a choice in the matter and if we wait, it would be too late. My husband kind of felt that being a boy, Matt probably wouldn't care one way of the other, but I decided that I would feel terribly guilty if years from now Matt asked why we didn't do anything to round out his head when we could have.

Right now we are just waiting to get authorization from our insurance company so we can go ahead with the casting appointment. This is a bit frustrating having to wait because we decided that we would get the band regardless of whether or not insurance covers it and we are ready to begin this process.

Sometime I feel bad that I waited so long, but there are people in this group who have had good correction with babies around this age.

Good Luck! And whatever decision you make will be the right one for your family.

's Mom (almost 9 months, tort and plagio)

Warrington, PAhabu87 <rschil@...> wrote:

Hello,I have been reading posts here for a few days and I would like to ask a few questions from the great people here. My daughter is 8 months old and has what I would call mild plagiocephaly. After we noticed her flat spot we began a repositioning regimen and it did stop it from getting worse, but has not improved it. She was a premature birth and had some mild torticolis that has since gone away with therapy. does not have any facial asymmetry from the front that I can see but the back left side of her head is noticeably flat and it does seem to me that her face is slightly wider in front than it should be.Our doctor does not seem to be that concerned about her plagiocephaly but did give us a referral to the local children's hospital. The hospital told us flat out. "We do not treat

plagiocephaly". To get a helmet we would have to drive/fly to another city and pay for it ourselves as our insurance will probably not cover it.I have posted several pictures of her in the photos section here. I would appreciate any opinions you might have. If she needs a helmet we will do it, regardless of the cost. Everyone who sees her seems to think that her hair will eventually cover it up, but nobody we know has any experience with this problem. Thank you so much for your help. For more plagio info

[Guest guest]

I just wanted to 2nd what everyone has already told you. The main thing to think about is whether you will regret it later. The thing about banding is that if you miss the window, you miss the chance for correction. Deciding to band is a hard choice, but it is over before you know it. Anyway, welcome to the group and good luck with your decision!

Jen- TXTrentyn- 16 mo. DocBand 06/12/03

My daughter

Hello,I have been reading posts here for a few days and I would like to ask a few questions from the great people here. My daughter is 8 months old and has what I would call mild plagiocephaly. After we noticed her flat spot we began a repositioning regimen and it did stop it from getting worse, but has not improved it. She was a premature birth and had some mild torticolis that has since gone away with therapy. does not have any facial asymmetry from the front that I can see but the back left side of her head is noticeably flat and it does seem to me that her face is slightly wider in front than it should be.Our doctor does not seem to be that concerned about her plagiocephaly but did give us a referral to the local children's hospital. The hospital told us flat out. "We do not treat plagiocephaly". To get a helmet we would have to drive/fly to another city and pay for it ourselves as our insurance will probably not cover it.I have posted several pictures of her in the photos section here. I would appreciate any opinions you might have. If she needs a helmet we will do it, regardless of the cost. Everyone who sees her seems to think that her hair will eventually cover it up, but nobody we know has any experience with this problem. Thank you so much for your help. For more plagio info

[Guest guest]

Thanks, , I posted this on my list serve, as well as several others I

participate on. All are including your daughter in their prayer chains. Our

hearts are with all of you.

~k

[ ] my daughter

Karyn, of course you have my permission and it is most appreciated.

[Guest guest]

Hello again everyone, I haven't posted in a while I have been very

busy. My daughter and I have CMT type 1. She had severe respiratory problems

along with some balance problems. My ex-wife didn't believe that she might have

CMT, which was wierd since I have it.

My daughter became so sick that me and my fiance (who believes that my daughter

may have CMT) left the country with her. My daughter blossomed into a happy

healthy child.

We were caught in june 2006. I just saw my daughter for the first time last

Saturday. She has a broken leg and said her arm had been broken, and she is only

4. I could hardly stop from crying thinking of the abuse my daughter is

suffering at the hands of my ex-wife.

Of course it was all an " accident " .

No one seems to believe the seriousness of CMT and how important it is for my

daughter to be taken care of properly. Because she looks healthy and when a

lawyer or social worker sees her for 30 minutes they say she is fine! I keep

telling everyone to watch her for several hours, to watch her at the playground

against children her own age, and these people won't do it.

They sit her in an office and talk to her and pronounce her

healthy. My and my fiance played with our daughter at the park almost everyday,

and of course we always were right beside her. My ex has never called the MDA

office or scheduled an appointment, or nothing. I am sorry to rant. If you go

to http://savecarolinamaria.com/ you can read about my daughter. The good news

is we have a lawyer that is the top child lawyer in San . I will try not

to write a novel next time, I just haven't posted in a while, and trying to get

out all my emotions upon seeing my daughter.

Kirk

[Guest guest]

Hi group,

Perhaps some of you might be able to help Mandy?

Thanks, Chris.

Begin forwarded message:

> From: " Mandy & Ian Cadd " <kiangsi1@...>

> Date: 22 May 2007 6:21:34 PM

> <cadlard@...>

> Subject: My daughter

>

> Hi I have a daughter who turned 16 in March very short stature 4 foot

> 11inches she has had problems now for approximately 12 months. Firsty

> she suffered badly with tonsilitis for months and then she had a short

> break prior to getting Iritis severly. When she contracted the iritis

> she had treatment and it went away however the specialist did a test

> and she is HLA B27 positive which I was told makes her ,more

> suseceptible to auto immune disorders> I was diagnosed with MS in

> October last year and was just tested for the same gene however I am

> negative. She then got another dose of the Iritis and we got to that

> very quickly so was much shorter lived than the first time. She went

> to see a rhuematologist and she was unable to find anything wrong with

> her however within about 6 weeks she started to get a bad foot and we

> returned to see the dr she then started toi keep a close eye on her.

> Her foot became more and more painful and she couldnt walk properly on

> it she has been in to hospital to have steriods injected into the

> jpoint however when they went to do it they found maybe an infection

> so they then abandoned the cortisone treatment.

> They admitted her to hospital and told us she may have oesteomylitis

> and put her on heavy duty antibiotics for a few days IV and then she

> came home on huge doses.

> She is alos on non steroidal tablets and recently she has been put on

> a sulphur drug and they have cast her leg as well she has had enough

> and so have I

> Have you any ideas what this could be I thought maybe Reiters

> syndrome, Juvenile rhuematoid arthritis or god knows what else !!!!!

> The Dr seems to be grsping at straws she thinks it could be a rare

> condition called HLA B27 associated enthesopathy orthopathy syndrome

> Have you heard of this ????

>  

>  

> Cheers Mandy

[Guest guest]

Sounds like myself. My symptoms started in my right ankle. I am

HLAB27 neg. but have all the symptoms of ankylosing spondylitis and

many other so called auto-immune spondylopathies. I have narrowed

down the cause to diet and infection. Try looking on www.kickas.org

and read The Inflamation Syndrome. Main stream medicine will keep

putting your daughter on stronger drugs with poor outcomes. You need

to find a holistic MD that understands inflammation in our bodies and

all the diseases it can cause. Anything that I can do let me know.

Good luck.

>

> Hi group,

>

> Perhaps some of you might be able to help Mandy?

> Thanks, Chris.

>

> Begin forwarded message:

>

> > From: " Mandy & Ian Cadd " <kiangsi1@...>

> > Date: 22 May 2007 6:21:34 PM

> > <cadlard@...>

> > Subject: My daughter

> >

> > Hi I have a daughter who turned 16 in March very short stature 4

foot

> > 11inches she has had problems now for approximately 12 months.

Firsty

> > she suffered badly with tonsilitis for months and then she had a

short

> > break prior to getting Iritis severly. When she contracted the

iritis

> > she had treatment and it went away however the specialist did a

test

> > and she is HLA B27 positive which I was told makes her ,more

> > suseceptible to auto immune disorders> I was diagnosed with MS in

> > October last year and was just tested for the same gene however I

am

> > negative. She then got another dose of the Iritis and we got to

that

> > very quickly so was much shorter lived than the first time. She

went

> > to see a rhuematologist and she was unable to find anything wrong

with

> > her however within about 6 weeks she started to get a bad foot

and we

> > returned to see the dr she then started toi keep a close eye on

her.

> > Her foot became more and more painful and she couldnt walk

properly on

> > it she has been in to hospital to have steriods injected into the

> > jpoint however when they went to do it they found maybe an

infection

> > so they then abandoned the cortisone treatment.

> > They admitted her to hospital and told us she may have

oesteomylitis

> > and put her on heavy duty antibiotics for a few days IV and then

she

> > came home on huge doses.

> > She is alos on non steroidal tablets and recently she has been

put on

> > a sulphur drug and they have cast her leg as well she has had

enough

> > and so have I

> > Have you any ideas what this could be I thought maybe Reiters

> > syndrome, Juvenile rhuematoid arthritis or god knows what

else !!!!!

> > The Dr seems to be grsping at straws she thinks it could be a

rare

> > condition called HLA B27 associated enthesopathy orthopathy

syndrome

> > Have you heard of this ????

> >  

> >  

> > Cheers Mandy

>

>

>