New To This Group

[Guest guest]

Dale & na,

at the top right of the Plagio site there is a archive box. Type

in Australia or any other keywords and you should get some imfo.

There are a few Auz members so I hope you get some imfo.

Lorraine.

> Hi all

>

> My husband Dale and I - nna are new to this group - we live in

> Queensland Australia and are wondering if there is anyone else out

> there in Australia - We seem to be finding a lot of American

> Information and as yet have not been given a diagnosis by the

> specialist at the hospital - we were told a month ago to come back

in

> a month - although x-rays were done of our daughters skull - we

don't

> know yet if this is anything serious but her head looks alot like

> ones we have seen on various web sites -

> any info that can be given to us would be very much appreciated as

we

> go back to the hospital in two days -0 and this time we want as

much

> info as possible to present to the Dr.

>

> Our little girl is six months old and her head shape seems to

become

> more pronouonced as she gets older

>

> As we mentioned before any info would be much appreciated

>

> Regards

> Dale & nna

> Queensland Australia

[Guest guest]

Dale and nna,

We have two people from Australia and I'm sure they will both reply. Either

one of them will be able to tell you where you can go for treatment in

Australia. Treatment options are fewer and farther between from what I've

heard from our other two Australian members, but there are options available!

Help is available and you are getting started at the right time. I would

recommend pushing as hard as you can to get things rolling. The earlier they

start the better the results.

Good luck and keep us posted.

Marci (Mom to )

Oklahoma

[Guest guest]

Hello, My name is Sonji

I have a 6 year old son who is Pdd Nos Adhd

I think my son is showing signs of vitamin C

deficiency....He is very good at taking pills.....I

was wondering....If their are any pill forms of Msm

and vitamin C that are not Horse size......I just got

a blood test administered to see if he has any mercury

in his System.....but don't really know what to do

after that....I have him on a gfcf diet and recieved

more vocabulary and more communication....I am

trying....

B6

magnesium

enzymes

OT

SP THE

Super Nu Thera

Private School

IT IS BECOMING EXTREMELY EXPENSIVE DOES ANYONE NO OF

ANY FINANCIAL ASSISTANCE

On the Enzymes I have seen regression lots of

stemming, letters being turned back around and also

extreme aggression and laughning inappropriately.....

the aggression left after I stopped giving him the

Super Nu Thera...but regression is still continuing as

well as some heightened hyper activity in school I

think there are some phenol isssues...... If anyone

has any suggestions I would

deeeeeeeeeeeeeeppppppppllllly

appppppreeeeeciatttedd any suggestion

Sonji

May God Continue to bless each and evry one of

you!!!!!!!!!!!!

__________________________________________________

[Guest guest]

>

> Hello, My name is Sonji

>

> I have a 6 year old son who is Pdd Nos Adhd

>

> I think my son is showing signs of vitamin C

> deficiency....He is very good at taking pills.....I

> was wondering....If their are any pill forms of Msm

> and vitamin C that are not Horse size......

MSM comes as a powder at my health food store, you can use that if

that would work for you. Also, you can buy children's chewable

vitamin C which are smaller, if that might work for you.

I just got

> a blood test administered to see if he has any mercury

> in his System.....but don't really know what to do

> after that....I have him on a gfcf diet and recieved

> more vocabulary and more communication....I am

> trying....

>

> B6

> magnesium

> enzymes

> OT

> SP THE

> Super Nu Thera

> Private School

>

> IT IS BECOMING EXTREMELY EXPENSIVE DOES ANYONE NO OF

> ANY FINANCIAL ASSISTANCE

You can eliminate the private school, OT, ST, and other similar

interventions if you are in US [and most other countries but I am

not aware of those procedures] and enroll your child in public school

and include these things in the IEP. I can give you more information

on that if you would like. I homeschool, so I actually do not endorse

this option, but most parents do use public school, so if you believe

that is best for your child, then you should consider it.

>

> On the Enzymes I have seen regression lots of

> stemming, letters being turned back around and also

> extreme aggression and laughning inappropriately.....

> the aggression left after I stopped giving him the

> Super Nu Thera...

Yes the SNT contributes to aggression, laughing, and hyperactivity in

phenol sensitive kids. Are you still giving tSNT? You listed it

above. Here is more info on phenols

http://home.pacbell.net/cscomp/phenol.htm

but regression is still continuing as

> well as some heightened hyper activity in school I

> think there are some phenol isssues......

Regression can be a result of the enzymes for the first few weeks.

How long have you been using enzymes? Also, have you added back

foods, or are you still gfcf? If you have added back foods,

especially gluten or foods from the phenol link above, that might be

your problem, you should remove them again and see if that helps.

Depending on which enzymes you are using, they do not all work for

gluten or phenol issues.

Dana

[Guest guest]

Hi Meghan, and welcome! I'm fairly new to the list, and pretty new to RA,

as well. I've found the people on the list to be really helpful and kind,

and have learned a great deal about coping with this disease.

I can relate to how the disease and the appointments and fatigue just eat

away at your days. The volunteer work sounds like a great idea! I try to

do some community activities as well. Not only does it get me out and

about, but it is really uplifting as well.

Warm regards,

Carol in FL

[ ] New to this group

Hi all,

My name is Meghan. I have Psoriatic Arthritis and a secondary

diagnosis of FMS. I'm a moderator for one of the PA Newsgroups, but

this sounded like a good group too! It looks like y'all talk about a

lot of the issues I'm interested in. I've had PA for 6 years and I'm

30 years old. It is such a misunderstood disease by doctors, that

half the time I'm questionining what they really know.

Anyway, I've got one really really bad ankle, some knuckle redness

and swelling, SI joint pain and stiffness, chronic elbow tendonitis,

multiple finger joint pains, some swelling in my knees, awful

fatigue, etc. It's a disease similar to RA, but usually less

devasting to the actual joints. It's a " connective tissue " arthritis.

I'm on MTX and trying to tolerate Vioxx. I have a ton of problems

with NSAIDs and GERD. I'm very well-educated about the medications.

On the waiting list for Enbrel and can't start Remicade for now due

to a positive TB skin test. Ugh.

I've been on disability for a year and am fighting with SSDI. I don't

think I'll be able to get it, but I'm hoping. Periodically I'll feel

kinda normal for a couple of days and think I can work again like I

used to. I see people on this list who are working with working or

fighting with insurance, etc. I am just starting some volunteer work-

maybe 2-3 hours a week. With all the Dr appts and PT, my time gets

sucked away! Most of the time, I don't feel so good, but gotta

have some kind of life!

I don't know that I'll post much, but wanted to introduce myself.

Wishing everyone wellness,

Meghan

[Guest guest]

hi meghan and welcome. sorry but kind of out of it now. but wanted to say hi.

kathy in il

[Guest guest]

Welcome, Meghan! So glad you found us and introduced yourself.

Sorry about your long-standing PA and frustration with doctors. We've

got a few members with psoriatic arthritis who would probably like to

compare notes with you.

I hope that you can have the chance to try Enbrel soon and that you can

tolerate Vioxx or find another NSAID that will work.

Good luck with your SSDI quest. There are several people here who can

relate to you on that count, too.

[ ] New to this group

> Hi all,

>

> My name is Meghan. I have Psoriatic Arthritis and a secondary

> diagnosis of FMS. I'm a moderator for one of the PA Newsgroups, but

> this sounded like a good group too! It looks like y'all talk about a

> lot of the issues I'm interested in. I've had PA for 6 years and I'm

> 30 years old. It is such a misunderstood disease by doctors, that

> half the time I'm questionining what they really know.

>

> Anyway, I've got one really really bad ankle, some knuckle redness

> and swelling, SI joint pain and stiffness, chronic elbow tendonitis,

> multiple finger joint pains, some swelling in my knees, awful

> fatigue, etc. It's a disease similar to RA, but usually less

> devasting to the actual joints. It's a " connective tissue " arthritis.

> I'm on MTX and trying to tolerate Vioxx. I have a ton of problems

> with NSAIDs and GERD. I'm very well-educated about the medications.

> On the waiting list for Enbrel and can't start Remicade for now due

> to a positive TB skin test. Ugh.

>

> I've been on disability for a year and am fighting with SSDI. I don't

> think I'll be able to get it, but I'm hoping. Periodically I'll feel

> kinda normal for a couple of days and think I can work again like I

> used to. I see people on this list who are working with working or

> fighting with insurance, etc. I am just starting some volunteer work-

> maybe 2-3 hours a week. With all the Dr appts and PT, my time gets

> sucked away! Most of the time, I don't feel so good, but gotta

> have some kind of life!

>

> I don't know that I'll post much, but wanted to introduce myself.

>

> Wishing everyone wellness,

> Meghan

[Guest guest]

Jenn-

Welcome to the group!

Here is some info on repositioning:

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

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

I would suggest taking weekly photos of all angles of her head. Wet

her hair down if she has any. Taking a picture from the chin up

will help show the asymmetries.

We repositioned our son from 2-4 months with good results. It was

really hard for us since he had torticollis and his neck kept

springing back to that comfort zone (and I had a wild 2 year to

manage). Is she in PT for the tort?

You may get some really terrific results since you are starting so

young. Good luck and keep us posted!

Dane's mom DOC Grad

> My daughter has a flat spot her right side. My pediatrician

noticed

> that she tends to turn her head to the right often. He said it

was

> habit and to work with her to turn to the left. Well, when I said

> something to a friend of mine she said that her son had

torticollis.

> I searched torticollis on the internet and learned more about it.

> When I looked at my daughter's head from the top I noticed that

her

> ears were misaligned. We have started repositioning her and

trying

> to keep her off the flat spot. Sometimes it is impossible to do.

> How long does a doctor recommend repositioning before going to

other

> treatments? She is only 2 months old so hopefully we started soon

> enough that the repositioning will work. I took a picture the day

we

> started repositioning so I could monitor her progress. Can anyone

> give me advice or suggestions on what to do?

[Guest guest]

Hi Jen.

Welcome to the group. You will find a lot of informed parents on

this site that can help you. I am fairly new to this group as well.

My son has a flat spot on the right as well; now wears a

corrective helmet. We are seeing some improvement already and it has

only been 1 1/2 wks. Keep on trying the repositioning. A lot of

parents have success although we didn't. Also keep your doctor

informed with the tort as well as plagio. Don't let them tell you

that this will go away because as you will notice with most parents

on this site the problem didn't just go away. Make sure that if the

Dr. hasn't any info on these topics bring in as much info as you can

to better inform him as well as yourself. You can't be too cautious

considering this is your little girl! Don't let them stear you away

from helmets/bands. Some doctors feel that they don't work. Just

look on this site and you will see some great correction for

yourself. Good luck to you. Keep on the repoing and keep taking

pictures so that you can see progression or no progression and bring

them to your doctor.

Lots of luck to you & your family. Keep us posted.

Donna('s mom)

[Guest guest]

Hi,

Welcome to the group! Wow you really are at an advantage with your

daughter being so young. You can repo for a few months and if it's

not working you still have time to get her banded and get great

results! Here are some links to help you out,

http://www.pedisurg.com/PtEduc/Torticollis.htm

Has some really great stretches you can do to help work the

torticollis out.

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

http://www.geocities.com/alittleone2000/plagiopage.htm

The last one is an excellent page on repositioning. She tells you how

she did it along with pictures of her son's progress.

Please keep us posted on your daughter.

> My daughter has a flat spot her right side. My pediatrician

noticed

> that she tends to turn her head to the right often. He said it was

> habit and to work with her to turn to the left. Well, when I said

> something to a friend of mine she said that her son had

torticollis.

> I searched torticollis on the internet and learned more about it.

> When I looked at my daughter's head from the top I noticed that her

> ears were misaligned. We have started repositioning her and trying

> to keep her off the flat spot. Sometimes it is impossible to do.

> How long does a doctor recommend repositioning before going to

other

> treatments? She is only 2 months old so hopefully we started soon

> enough that the repositioning will work. I took a picture the day

we

> started repositioning so I could monitor her progress. Can anyone

> give me advice or suggestions on what to do?

[Guest guest]

Hi & welcome to our group!

You are certainly at a great younger age to correct your daughter's

plagio w/repositioning alone.

Check out the links replied to you with. You can also check

out www.plagiocephaly/org/suport repositioning tips.

Good luck, please keep us posted on her progress.

Debbie Abby's mom DOCGrad

MI

> > My daughter has a flat spot her right side. My pediatrician

> noticed

> > that she tends to turn her head to the right often. He said it

was

> > habit and to work with her to turn to the left. Well, when I

said

> > something to a friend of mine she said that her son had

> torticollis.

> > I searched torticollis on the internet and learned more about

it.

> > When I looked at my daughter's head from the top I noticed that

her

> > ears were misaligned. We have started repositioning her and

trying

> > to keep her off the flat spot. Sometimes it is impossible to

do.

> > How long does a doctor recommend repositioning before going to

> other

> > treatments? She is only 2 months old so hopefully we started

soon

> > enough that the repositioning will work. I took a picture the

day

> we

> > started repositioning so I could monitor her progress. Can

anyone

> > give me advice or suggestions on what to do?

[Guest guest]

At my son's two month check-up I mentioned to my Ped that I was concerned about him always keeping his head to the right. I also mentioned that I could see a noticeable difference in the shape of his head. He told me to concentrate more on feeding him on the opposite side and that babies of right-handed people frequently turn their head to the right because when they are laid down by a righty, their heads are usually placed on the righty's left side, hence they have to turn their head to the right to look at Mom or Dad...yada, yada, yada. I didn't really buy it but spent the next two weeks trying to reposition. Finally, I decided to be more persistent and push the issue. They gave me a referral that day (when Jadon was 2 1/2 mos) to the Ortho and Proth group. Two days later, we did a head scan and saw the P.T. at the office and because of his age, they were hopeful that P.T. would be enough to help the torticollis, but unfortunately, it wasn't. Three weeks later they did another scan and decided it was time to do a band, because the plagio was getting worse. They gave me high praises, though, for recognizing it so early and being persistent. It's always reassuring to hear that when you feel like an over-worrying Mom.

I really do LOVE my Ped. I just feel that in the world of medicine today, you have to be very pushy and persistent to get a referral. Insurance (as so many have been dealing with) makes it very difficult to get the care that is needed sometimes. IF YOU ARE CONCERNED, GET ON THAT PHONE AND CALL YOUE PED BACK AND TELL THEM THAT YOU ARE READY TO DO SOMETHING. I am so glad I did, because Jadon just turned 4 mos last week, so I am very happy that we got it during these early months!!!

Teri and Jadon

From: " jennandcarly <JennHornsby@...> " <JennHornsby@...>

Reply-Plagiocephaly

Date: Thu, 27 Feb 2003 14:56:21 -0000

Plagiocephaly

Subject: New to this group

My daughter has a flat spot her right side. My pediatrician noticed

that she tends to turn her head to the right often. He said it was

habit and to work with her to turn to the left. Well, when I said

something to a friend of mine she said that her son had torticollis.

I searched torticollis on the internet and learned more about it.

When I looked at my daughter's head from the top I noticed that her

ears were misaligned. We have started repositioning her and trying

to keep her off the flat spot. Sometimes it is impossible to do.

How long does a doctor recommend repositioning before going to other

treatments? She is only 2 months old so hopefully we started soon

enough that the repositioning will work. I took a picture the day we

started repositioning so I could monitor her progress. Can anyone

give me advice or suggestions on what to do?

[Guest guest]

Hi!!, you just came to the right place, I'm very happy that you

identified the problem early. I'm sure you'll find great ideas in the

links that the girls gave you. I wish you all the luck with the baby

and please keep us posted and also don't hesitate to ask questions we

are here to help.

mommy of (7M)

> > > My daughter has a flat spot her right side. My pediatrician

> > noticed

> > > that she tends to turn her head to the right often. He said it

> was

> > > habit and to work with her to turn to the left. Well, when I

> said

> > > something to a friend of mine she said that her son had

> > torticollis.

> > > I searched torticollis on the internet and learned more about

> it.

> > > When I looked at my daughter's head from the top I noticed that

> her

> > > ears were misaligned. We have started repositioning her and

> trying

> > > to keep her off the flat spot. Sometimes it is impossible to

> do.

> > > How long does a doctor recommend repositioning before going to

> > other

> > > treatments? She is only 2 months old so hopefully we started

> soon

> > > enough that the repositioning will work. I took a picture the

> day

> > we

> > > started repositioning so I could monitor her progress. Can

> anyone

> > > give me advice or suggestions on what to do?

[Guest guest]

Hi, and welcome to the group! I see you already got some wonderful

replies, so I won't bore by reiterating what they said. Best of luck

with your repositioning, your daughters at a wonderful age to see

some really good correction. Be sure to keep us posted, and again,

welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> My daughter has a flat spot her right side. My pediatrician

noticed

> that she tends to turn her head to the right often. He said it was

> habit and to work with her to turn to the left. Well, when I said

> something to a friend of mine she said that her son had

torticollis.

> I searched torticollis on the internet and learned more about it.

> When I looked at my daughter's head from the top I notice that her

> ears were misaligned. We have started repositioning her and trying

> to keep her off the flat spot. Sometimes it is impossible to do.

> How long does a doctor recommend repositioning before going to

other

> treatments? She is only 2 months old so hopefully we started soon

> enough that the repositioning will work. I took a picture the day

we

> started repositioning so I could monitor her progress. Can anyone

> give me advice or suggestions on what to do?

[Guest guest]

Hi Dara & welcome to our group!

Thank you for such a great introduction. Your son is definitely not

too old to get some great results!!! He's still got some good growth

spurts in the months ahead!

Good luck at tomorrow's casting. Please let us know how he does (and

mommy!)...keep us posted.

Debbie Abby's mom DOCGrad

MI

> Hello to everyone,

> My son (8 months) has torticollis and plagio. We got the diagnosis of

> tort after I noticed how flat and misshappen the back of his head

> was. We started therapy in october and his flatness has improved. But

> his head shape was still off. Everyone kept telling me it

> would 'round out' on it's own. Well, you can guess that it didn't go

> away. It wasn't until the beginning of this month that we finally got

> to see a craniofacial specialist. I had been asking about this for 2

> months! We went to see Dr. Shin at Yale/New Haven Hospital. He

> immediately saw what I had been seeing. It was such a relief for

> someone to notice it and not let it go farther without treatment! The

> doctor wrote a script for the DOCband. Luckily, our insurance will

> cover 100% of the cost.

>

> Ray will be getting casted tomorrow afternoon. I'm glad we won't have

> to wait longer. I can't help feeling I should have fought harder

> months ago to get him in a band. I'm just hoping that he will see

> much improvement, even though he's older.

>

> Does anyone else live in northwest Connecticut or nearby? I would

> love to meet other families who are dealing with plagio and/or tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

Hi Dara.

Welcome to the group. My daughter is 8 months old and recently got

her helmet (a local made LLUMC helmet). You'll will see a lot of

correction. Your baby isn't too old at all. He'll do great. I believe

there are some families up near you, but I am not 100% sure. If there

are they'll chime in soon. I am about as far away as can be.....

California.

Keep us posted!!

, mom to Makenna (llumc helmet 2/20/2003)

> Hello to everyone,

> My son (8 months) has torticollis and plagio. We got the diagnosis

of

> tort after I noticed how flat and misshappen the back of his head

> was. We started therapy in october and his flatness has improved.

But

> his head shape was still off. Everyone kept telling me it

> would 'round out' on it's own. Well, you can guess that it didn't

go

> away. It wasn't until the beginning of this month that we finally

got

> to see a craniofacial specialist. I had been asking about this for

2

> months! We went to see Dr. Shin at Yale/New Haven Hospital. He

> immediately saw what I had been seeing. It was such a relief for

> someone to notice it and not let it go farther without treatment!

The

> doctor wrote a script for the DOCband. Luckily, our insurance will

> cover 100% of the cost.

>

> Ray will be getting casted tomorrow afternoon. I'm glad we won't

have

> to wait longer. I can't help feeling I should have fought harder

> months ago to get him in a band. I'm just hoping that he will see

> much improvement, even though he's older.

>

> Does anyone else live in northwest Connecticut or nearby? I would

> love to meet other families who are dealing with plagio and/or

tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to

all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

By the way, I just noticed your sons birthday!! Same as my daughters.

> Hello to everyone,

> My son (8 months) has torticollis and plagio. We got the diagnosis

of

> tort after I noticed how flat and misshappen the back of his head

> was. We started therapy in october and his flatness has improved.

But

> his head shape was still off. Everyone kept telling me it

> would 'round out' on it's own. Well, you can guess that it didn't

go

> away. It wasn't until the beginning of this month that we finally

got

> to see a craniofacial specialist. I had been asking about this for

2

> months! We went to see Dr. Shin at Yale/New Haven Hospital. He

> immediately saw what I had been seeing. It was such a relief for

> someone to notice it and not let it go farther without treatment!

The

> doctor wrote a script for the DOCband. Luckily, our insurance will

> cover 100% of the cost.

>

> Ray will be getting casted tomorrow afternoon. I'm glad we won't

have

> to wait longer. I can't help feeling I should have fought harder

> months ago to get him in a band. I'm just hoping that he will see

> much improvement, even though he's older.

>

> Does anyone else live in northwest Connecticut or nearby? I would

> love to meet other families who are dealing with plagio and/or

tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to

all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

Hi Dara and welcome to the group. Doesn't feel wonderful when a doctor knows what is going on!! That is great to hear that Ray will be casted right away. Also, the best news that your insurance company will cover 100%! We never see that, congrats. Keep in touch. Heidi, mom to Jeffry, local helmet, MN New to this group Hello to everyone,My son (8 months) has torticollis and plagio. We got the diagnosis of tort after I noticed how flat and misshappen the back of his head was. We started therapy in october and his flatness has improved. But his head shape was still off. Everyone kept telling me it would 'round out' on it's own. Well, you can guess that it didn't go away. It wasn't until the beginning of this month that we finally got to see a craniofacial specialist. I had been asking about this for 2 months! We went to see Dr. Shin at Yale/New Haven Hospital. He immediately saw what I had been seeing. It was such a relief for someone to notice it and not let it go farther without treatment! The doctor wrote a script for the DOCband. Luckily, our insurance will cover 100% of the cost.Ray will be getting casted tomorrow afternoon. I'm glad we won't have to wait longer. I can't help feeling I should have fought harder months ago to get him in a band. I'm just hoping that he will see much improvement, even though he's older.Does anyone else live in northwest Connecticut or nearby? I would love to meet other families who are dealing with plagio and/or tort. Maybe get a playgroup together a couple times a month? Sorry this got to be a long intro. I look foward to 'talking' to all of you.Dara7/02 Ray, my tort and plagio baby :)dd Kyra 10/97dd 7/99

[Guest guest]

Welcome,

Dara. You are not too late at

all. My son was born on 7/3 and

has only had his helmet for a few weeks now and we’re already seeing great

correction. There are many others

in this group who have gotten the band at 10+ months and have received

excellent results. Good luck at

the casting tomorrow. It’s quick

and painless. That’s great that

your insurance is covering the total cost of the band. Many are not so lucky. So, things seem to be falling right

into place for Ray!

& JD (DOCband since 2/26)

TX

-----Original

Message-----

From: Dara

[mailto:mom2kyra@...]

Sent: Monday, March 24, 2003 1:49

PM

Plagiocephaly

Subject: New to this

group

Hello to everyone,

My son (8 months) has torticollis and plagio. We got the diagnosis of

tort after I noticed how flat and misshappen the back of his head

was. We started therapy in october and his flatness has improved. But

his head shape was still off. Everyone kept telling me it

would 'round out' on it's own. Well, you can guess that it didn't go

away. It wasn't until the beginning of this month that we finally got

to see a craniofacial specialist. I had been asking about this for 2

months! We went to see Dr. Shin at Yale/New Haven Hospital. He

immediately saw what I had been seeing. It was such a relief for

someone to notice it and not let it go farther without treatment! The

doctor wrote a script for the DOCband. Luckily, our insurance will

cover 100% of the cost.

Ray will be getting casted tomorrow afternoon. I'm glad we won't have

to wait longer. I can't help feeling I should have fought harder

months ago to get him in a band. I'm just hoping that he will see

much improvement, even though he's older.

Does anyone else live in northwest Connecticut or nearby? I would

love to meet other families who are dealing with plagio and/or tort.

Maybe get a playgroup together a couple times a month?

Sorry this got to be a long intro. I look foward to 'talking' to all

of you.

Dara

7/02 Ray, my tort and plagio baby

dd Kyra 10/97

dd 7/99

For more plagio info

[Guest guest]

Hi Dara -

It sounds like you have the ball rolling and Ray will be on his way

to a rounder head in no time. At 8 months old he is definitely not

too old to see some great rounding.

Good luck with the casting tomorrow. Even though it's not much

fun it's over very quickly with no harm done. Be sure to take some

favorite comfort items and some toys that make noise or music

to distract. Let us know how it goes!

Marci (Mom to )

Oklahoma

> Hello to everyone,

> My son (8 months) has torticollis and plagio. We got the

diagnosis of

> tort after I noticed how flat and misshappen the back of his

head

> was. We started therapy in october and his flatness has

improved. But

> his head shape was still off. Everyone kept telling me it

> would 'round out' on it's own. Well, you can guess that it didn't

go

> away. It wasn't until the beginning of this month that we finally

got

> to see a craniofacial specialist. I had been asking about this

for 2

> months! We went to see Dr. Shin at Yale/New Haven Hospital.

He

> immediately saw what I had been seeing. It was such a relief

for

> someone to notice it and not let it go farther without treatment!

The

> doctor wrote a script for the DOCband. Luckily, our insurance

will

> cover 100% of the cost.

>

> Ray will be getting casted tomorrow afternoon. I'm glad we

won't have

> to wait longer. I can't help feeling I should have fought harder

> months ago to get him in a band. I'm just hoping that he will

see

> much improvement, even though he's older.

>

> Does anyone else live in northwest Connecticut or nearby? I

would

> love to meet other families who are dealing with plagio and/or

tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

Hi Dara,

I don't think I've seen anyone write that they were that close to CT,

but I've heard others like myself who will be traveling there from

out of state. We live in MA on the Cape and will be traveling there

for treatment. Our consult and casting will be in about a month. I

look forward to hearing how your experience goes. Good luck.

, mom to Hannah-3mos

> Does anyone else live in northwest Connecticut or nearby? I would

> love to meet other families who are dealing with plagio and/or

tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to

all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

Hi Dara,

Welcome to the group. I am also new here and live in the New Haven,

CT area. I just posted a similar message last week looking for

parents in the area. We also saw Dr Shin after trying to reposition

my son Mateo for 3 months. The flatness improved but not to the

level we wanted. I understand your frustration about having fought

harder but we should just look forward and know with faith that our

little ones will get better. We got casted today and it went better

than I expected. I would be very nice to meet you, I'm sure we will

have lots of war stories in the future months.

Carolina, mommy to Mateo (5 1/2 months), Connecticut

> Hello to everyone,

> My son (8 months) has torticollis and plagio. We got the diagnosis

of

> tort after I noticed how flat and misshappen the back of his head

> was. We started therapy in october and his flatness has improved.

But

> his head shape was still off. Everyone kept telling me it

> would 'round out' on it's own. Well, you can guess that it didn't

go

> away. It wasn't until the beginning of this month that we finally

got

> to see a craniofacial specialist. I had been asking about this for

2

> months! We went to see Dr. Shin at Yale/New Haven Hospital. He

> immediately saw what I had been seeing. It was such a relief for

> someone to notice it and not let it go farther without treatment!

The

> doctor wrote a script for the DOCband. Luckily, our insurance will

> cover 100% of the cost.

>

> Ray will be getting casted tomorrow afternoon. I'm glad we won't

have

> to wait longer. I can't help feeling I should have fought harder

> months ago to get him in a band. I'm just hoping that he will see

> much improvement, even though he's older.

>

> Does anyone else live in northwest Connecticut or nearby? I would

> love to meet other families who are dealing with plagio and/or

tort.

> Maybe get a playgroup together a couple times a month?

>

> Sorry this got to be a long intro. I look foward to 'talking' to

all

> of you.

>

> Dara

> 7/02 Ray, my tort and plagio baby

> dd Kyra 10/97

> dd 7/99

[Guest guest]

Beth,

Welcome to the group. My name is and i live in Reading, Ohio which

is a suburb of Cincinnati. I to had surgeries as a child for Ptosis, only

learn it was actually BPES after having children. My father had it as does

my grandfather and others from his family. I have one brother who does not

have and a sister who does not have it. I have 3 sons, 2 of which have it.

My youngest, who is 6, had surgery in July. He still is going to need at

least one more.

Again, welcome,

[Guest guest]

Hi I am new too. Let's hope this group works well, too! Glad to see

you here. I don't know yet who is on here but I am still subscribed to all

lists. I just cannot read all of the posts right now...but until I can, just

wanted to say Hi and I am here too. - Lynne A.

[Guest guest]

thanks for the welcome. let's hope for good things

Re: [ ] new to this group

Hi I am new too. Let's hope this group works well, too! Glad to see

you here. I don't know yet who is on here but I am still subscribed to all

lists. I just cannot read all of the posts right now...but until I can, just

wanted to say Hi and I am here too. - Lynne A.