new to the group

[Guest guest]

Hi Kelli,

Welcome to the group. I too am in NY and I too have a ! I

didn't use CPO though, I traveled to NJ for my daughter's treatment.

If I'm not mistaken we have had members use them. I'm sure they'll

chime in soon.

> Hi everyone my name is Kelli and I have an 8 month old preemie

() who has plagio and needs to be cast... Just looking to see

if there is anyone elese in the New York area that went to C.P.O.

Consulting in Manhatten, NY... This is where out Dr told us to take

her my only thing now is getting the insurance to approve the band..

Any advice or words of encouragement is greatly appreciated.

>

> Thanks

>

> Kelli

[Guest guest]

Hi everyone my name is Kelli and I have an 8 month old preemie () who has plagio and needs to be cast... Just looking to see if there is anyone elese in the New York area that went to C.P.O. Consulting in Manhatten, NY... This is where out Dr told us to take her my only thing now is getting the insurance to approve the band.. Any advice or words of encouragement is greatly appreciated.

Thanks

Kelli

[Guest guest]

Kelli,

I'm still catching up on posts, but just wanted to say welcome. I

saw that Rhonda already invited you to the get-together in

December... We went to Cranial Tech in Paramus, but I hope you get

some good feedback on CPO!

Kerri from White Plains

's mom (DOCgrad)

> Hi everyone my name is Kelli and I have an 8 month old preemie

() who has plagio and needs to be cast... Just looking to see

if there is anyone elese in the New York area that went to C.P.O.

Consulting in Manhatten, NY... This is where out Dr told us to take

her my only thing now is getting the insurance to approve the band..

Any advice or words of encouragement is greatly appreciated.

>

> Thanks

>

> Kelli

[Guest guest]

Emma,

Thank you for sharing the story of your sons. That's wonderful that

's head rounded back out, especially since your physicians,

etc. told you not to worry about it. I'm impressed that you are being

proactive in repositioning Cory; at his very young age, repo should be

able to make a big difference.

I don't know if you have already been to the LINKS section in the

REPOSITIONING folder, but I recently added a bunch of new repo

products that may give you some repo ideas. One of the products I

found was only sold in the UK. It is the " FULL OF FUN NEWBORN NECK

SUPPORT - DUCK " which I could only find at the Toys R Us in the UK.

That might help you out with head positioning in the carseat and swing.

I would love to know how the Head-n-Back sleep positioner works for you.

Take care,

Christie (Mom to Repo'd Remy)

> Hello all

>

> My name is Emma and I have 2 children, both boys, (2 years

> 3 months) and Cory 8 weeks. I noticed when was only a few

> months old that the back of his head was starting to go flat but on

> many occasions was told it was nothing to worry about and that it

> would correct it'self by the time was 2 years of age.

> Although I wasn't worried and trusted the words of my health visitor

> I still went on to see my GP who explained to me the meaning of

> Plagiocephaly and also confirmed it was not a problem. I then

> decided to research plagio on the net and it appears that here in

> the UK we do not use any medical intervention or prevention of

> plagio. s plagio progressively got worse (it was completely

> flat on that back), I was afraid of other parents reactions when

> they saw him although only a few people I know made comments about

> the shape of his head. By the time was 1 year of age, his

> plagio was almost non-existant. When I had my second son, Cory, 8

> weeks ago I made an effort to keep rotating the side I lay him down

> to sleep on (although I know we are supposed to lay our baby's on

> their backs)in order to prevent plagio but then there was a phase

> where he would only sleep in his carseat or swing, he is now 8 weeks

> old and I have noticed some very slight flattening to the back of

> his head. I am now making sure when he sleeps in the day-time he is

> on his side(s) and limiting the time on his back as much as

> possible. I have also purchased the head-n-back to sleep positioner,

> which is being shipped to the UK for me, as it appears we have

> nothing even similar in the UK. I would love to hear some more

> ideas/suggestions on re-positioning techniques for Cory even though

> his plagio is very slight he is only 8 weeks old and I can only

> presume it will worsen over the next few months until he is able to

> sit-up?

>

> Thanks for listening to me rambling on.

>

> Love

> Emma, & Cory

[Guest guest]

Hi Emma,

I just had to say hello and welcome to the group. My husband grew up outside of Pitlochry Scotland, and so I had to send a "Cheers" to you in his honor. Where in the UK are you located? Sounds like you have a pretty good handle on repositioning. Unfortunately, I didn't have a clue as to what was going on with my little girl until she was four months old, and then it was like a light bulb went off in my head. Of course, she had torticollis which complicated matters. Keep us posted on the progress of your children!! And please spread the word there about positioning and tummy time in the UK. Even more so since they are treating it there!!

Cheers,

Sherri on-Struan and Catriona (DOC banded 9-25)

Acworth GAEmma <sweetemz_1978@...> wrote:

Hello allMy name is Emma and I have 2 children, both boys, (2 years 3 months) and Cory 8 weeks. I noticed when was only a few months old that the back of his head was starting to go flat but on many occasions was told it was nothing to worry about and that it would correct it'self by the time was 2 years of age. Although I wasn't worried and trusted the words of my health visitor I still went on to see my GP who explained to me the meaning of Plagiocephaly and also confirmed it was not a problem. I then decided to research plagio on the net and it appears that here in the UK we do not use any medical intervention or prevention of plagio. s plagio progressively got worse (it was completely flat on that back), I was afraid of other parents reactions when they saw him although only a few people

I know made comments about the shape of his head. By the time was 1 year of age, his plagio was almost non-existant. When I had my second son, Cory, 8 weeks ago I made an effort to keep rotating the side I lay him down to sleep on (although I know we are supposed to lay our baby's on their backs)in order to prevent plagio but then there was a phase where he would only sleep in his carseat or swing, he is now 8 weeks old and I have noticed some very slight flattening to the back of his head. I am now making sure when he sleeps in the day-time he is on his side(s) and limiting the time on his back as much as possible. I have also purchased the head-n-back to sleep positioner, which is being shipped to the UK for me, as it appears we have nothing even similar in the UK. I would love to hear some more ideas/suggestions on re-positioning techniques for Cory even though his plagio is very slight he is only 8 weeks old and I

can only presume it will worsen over the next few months until he is able to sit-up?Thanks for listening to me rambling on.LoveEmma, & CoryFor more plagio info

[Guest guest]

Hi Sherri

I am from Nottingham, in the East Midlands area. I have done lots

of research on plagio since my first son, devloped it but

it seems we are not clued up on it at all over here. In fact when I

mentioned to my GP about the bands/helmets you use over there, he

laughed. I am only aware of the one surgeon here that will treat

plagio and that information was kindly given to me by a member of

this group. I was fortunate that my GP was correct in saying that

s head would correct it'self but it is now becoming clearer

that there was a huge possibility it may not have done which is why

I am so keen to prevent Cory's very slight plagio getting worse.

thanks for replying

Emma, Mitch & Cory

> Hello all

>

> My name is Emma and I have 2 children, both boys, (2

years

> 3 months) and Cory 8 weeks. I noticed when was only a few

> months old that the back of his head was starting to go flat but

on

> many occasions was told it was nothing to worry about and that it

> would correct it'self by the time was 2 years of age.

> Although I wasn't worried and trusted the words of my health

visitor

> I still went on to see my GP who explained to me the meaning of

> Plagiocephaly and also confirmed it was not a problem. I then

> decided to research plagio on the net and it appears that here in

> the UK we do not use any medical intervention or prevention of

> plagio. s plagio progressively got worse (it was

completely

> flat on that back), I was afraid of other parents reactions when

> they saw him although only a few people I know made comments about

> the shape of his head. By the time was 1 year of age, his

> plagio was almost non-existant. When I had my second son, Cory, 8

> weeks ago I made an effort to keep rotating the side I lay him

down

> to sleep on (although I know we are supposed to lay our baby's on

> their backs)in order to prevent plagio but then there was a phase

> where he would only sleep in his carseat or swing, he is now 8

weeks

> old and I have noticed some very slight flattening to the back of

> his head. I am now making sure when he sleeps in the day-time he

is

> on his side(s) and limiting the time on his back as much as

> possible. I have also purchased the head-n-back to sleep

positioner,

> which is being shipped to the UK for me, as it appears we have

> nothing even similar in the UK. I would love to hear some more

> ideas/suggestions on re-positioning techniques for Cory even

though

> his plagio is very slight he is only 8 weeks old and I can only

> presume it will worsen over the next few months until he is able

to

> sit-up?

>

> Thanks for listening to me rambling on.

>

> Love

> Emma, & Cory

>

>

>

>

[Guest guest]

<<I'm looking for guidance! I'm

not opposed to going it alone, but if there might be someone in the

Atlanta area (or anywhere) I would LOVE the security of being under

a practitioner's guidance.>>

I'm in the Florida Panhandle. The closest DAN! doctors for us are

in Lousianna, but they are EXCELLENT! Dr. Cave is in Baton Rouge

and Dr. El Dahr is in New Orleans.

Deborah

[Guest guest]

We're in NJ but are working with the Pfeiffer Treatment Center in

Illinois. I understand that if you have a pediatrician who's

willing, the Pfeiffer docs will phone consult through the process.

Not sure if this is a great fit for your circumstances, but it might

be worth pursuing...

> Hi. My name is and my daughter na and I live in

> Georgia.

[Guest guest]

Yes its expensive (Well it would be for me LOL)

<A HREF= " http://www.hriptc.org/ " >http://www.hriptc.org/</A>

HTH

Mandi in UK

> How do I get in contact with them? Is it expensive?

>

[Guest guest]

How do I get in contact with them? Is it expensive?

> > Hi. My name is and my daughter na and I live in

> > Georgia.

[Guest guest]

www.hriptc.org

Because Pfeiffer is a non-profit, their fees are shockingly low. We

had a three-hour consult and tons of blood, hair and stool tests done

for $1,200. Because the Pfeiffer fees were so reasonable, and

because we applied for pre-approval with our health insurance, they

paid all but a few dollars of the visit. If you pursue this with

your insurance company, make sure you tell them you're exploring

BIOCHEMICAL IMBALANCES, and never, ever, mention the word autism. On

the Pfeiffer site they give you suggestions for how to word your

statement to the insurance company. You may e-mail me privately if

you have trouble locating any info.

> > > Hi. My name is and my daughter na and I live in

> > > Georgia.

[Guest guest]

Would you happen to know if Medicaid picks up any of the costs?

[Guest guest]

If I remember correctly,

Absolutely Not.

I think everything at Pfeiffer that I signed had some kind of

Medicaid disclaimer.

> Would you happen to know if Medicaid picks up any of the costs?

[Guest guest]

Hi Amber!

Welcome to the group. My son Aidan was 6.5 months when he got his helmet and he had no problem at all adjusting. He never had red marks during the 3 hour checks the first 48 hours. He wore it 23 hours from day 1. He has not cared at all about the helmet and doesn't even know it is on. Hopefully because of 's age it will go smoothly for you as well.

What kind of band is getting.

Deb w/ Aidan (DOC 10/21)

New to the Group

Hi everyone!I am new to this group and just wanted to tell everyone hi. I have a 6 month girl named who hopefully will be getting her helmet soon. I just got the insurance to cover all but $300 so yeah me! What should my husband and I expect when we first get the helmet? ThanksAmberFor more plagio info

[Guest guest]

Hi Amber & welcome to our group:

Has been casted for her helmet yet? Do you know what type

she'll be receiving (DOCband, STARband, another type?). That's

GREAT to hear your ins. is covering most of the cost!! What a

relief.

You will most likely be very surprised at how well will

adjust to her new helmet. MOst babies, mine included, don't notice

em for a bit! I couldn't believe it. My daughter slept as normal

too. Some babies do take a bit longer to adjust, although after a

few days or so, they're fine with it.

Debbie Abby's mom DOCGrad

MI

> Hi everyone!

> I am new to this group and just wanted to tell everyone hi. I

have a

> 6 month girl named who hopefully will be getting her helmet

> soon. I just got the insurance to cover all but $300 so yeah me!

> What should my husband and I expect when we first get the helmet?

> Thanks

> Amber

[Guest guest]

She has been casted. I don't know what type she is going to get. It

is going to be made by a local (utah) company. She is such a mellow

baby any way so I hope she dosen't notice

Amber

> > Hi everyone!

> > I am new to this group and just wanted to tell everyone hi. I

> have a

> > 6 month girl named who hopefully will be getting her

helmet

> > soon. I just got the insurance to cover all but $300 so yeah me!

> > What should my husband and I expect when we first get the

helmet?

> > Thanks

> > Amber

[Guest guest]

Hi Amber,

I see that you've already gotten some great replies so I'll just

welcome you to the group!

> Hi everyone!

> I am new to this group and just wanted to tell everyone hi. I have

a

> 6 month girl named who hopefully will be getting her helmet

> soon. I just got the insurance to cover all but $300 so yeah me!

> What should my husband and I expect when we first get the helmet?

> Thanks

> Amber

[Guest guest]

I wanted to welcome you to the group! Do you know what type of helmet your daughter will be getting.

Angie and Jenna(STAR grad)

New to the Group

Hi everyone!I am new to this group and just wanted to tell everyone hi. I have a 6 month girl named who hopefully will be getting her helmet soon. I just got the insurance to cover all but $300 so yeah me! What should my husband and I expect when we first get the helmet? ThanksAmberFor more plagio info

[Guest guest]

Amber, I see you have rec'd lots of tips so I will just welcome you

to the group. Let us know when gets her band.

Dustie

> Hi everyone!

> I am new to this group and just wanted to tell everyone hi. I have

a

> 6 month girl named who hopefully will be getting her helmet

> soon. I just got the insurance to cover all but $300 so yeah me!

> What should my husband and I expect when we first get the helmet?

> Thanks

> Amber

[Guest guest]

Dear Laurel, welcome to the group.

My grandson Benny not only knows when he is in a doctor's office but he

*definitely* knows when he is being tested or evaluated and it upsets

him a lot. He tends to be silent or scream and be rather

uncoooperative rather than talking at such times. Or if he says

anything, it is " Out! " meaning his intense preference would be to

leave...

Just on the hopeful side, I remember baptizing a little Pierre Robin

Syndrome newborn in the hospital some years ago--she got aspiration

pneumonia before they noticed anything was wrong with her. Turned blue

also. She is now doing very well, the last time I visited the parish

she was serving as the crucifer (that means she led the procession in

carrying the cross), she must be 11 or 12 years old. I asked her

great-grandmother how she was doing and she said, " Hannah? " she's just

herself. " Hannah spoke to me about the fact she knew I had baptized

her. (Not being " religious " here, I'm just telling you about my

contacts with her--I'm a retired priest.) Her parents were glad she

only required one surgery for the palate. I remember her voice quality

being a little unusual as a small child, but now it seems pretty good.

Peace,

Kathy E.

On Nov 24, 2003, at 10:55 PM, & Laurel wrote:

> Could this be a " Lab Coat Syndrome " kind of thing? He definitely

> knows when he is in a doctor's office.

[Guest guest]

Hi--

Check these two websites for further info:

http://www.shopinservice.com/latetalker.htm

http://www.cherab.org/

Also on the message board, you can go back and read old archived

messages... and just stay on and ask questions from time to time!

W

--- In , " Laurie " <laurietrn@y...>

wrote:

> Hi...

> My son has had speech problems ever since he has been talking, and

> after going through 3 years of special ed the diagnosis came back

as

> Developmental Apraxia. I know that we are going to be in for a

long

> haul with his speech, but does anyone have any in sight to help

> improve his speech?

>

> Laurie... 8 years 2 months

[Guest guest]

Hi Janet,

Welcome to the group. I think we can handle both the silly and the

bad moments. I specialize in silly, can get downright goofy at

times. I'm Judi, age 57 (chronologically--age 12 mentally), married

28 years, mother of one, grandmother of 4, including 9-month old

triplets and their 3 year old brother. I have fibromyalgia,

osteoarthritis, and Dercum's disease, so I have my share of bad

days. But logging on here usually either cheers me up or gives me

some good information to go on. and a are the best.

Happy Holidays,

Judi

> Hi there,

> I just signed up to this group and im hoping to meet some people to

> share some silly and bad moments with. Im 41, married, female and

> have 3 daughters. I have dermatomyositis/chronic rheumatism

> momaof340

[Guest guest]

Welcome, Janet!

Yes, sharing of all kinds goes on here. People in the group have been on

the quiet side lately, but post as often as you like and, hopefully,

you'll find the kind of support or friendship you're looking for.

I hope you like it here.

[ ] New to the group

> Hi there,

> I just signed up to this group and im hoping to meet some people to

> share some silly and bad moments with. Im 41, married, female and

> have 3 daughters. I have dermatomyositis/chronic rheumatism

> momaof340

[Guest guest]

Pain in the soles of my feet?

I have had RA now for about 5 years now: treated but mostly untreated since I

live in the Florida Keys where there is a tremendous lack of doctors or they

do not take Medicare and I " make too much to be on Medicaid " ?! Recently I have

developed two new symptoms. Intense pain in the bottom/soles of my feet that

is so bad it wakes me up at night and intense pain about three inches down my

arms and under my arm pits and often do not have any feeling or control of my

hands. Literally they become paralyzed. Any ideas?

Panicking in Florida; Thanks

Jacquie

[Guest guest]

you foot pain sounds like plantar fascitis. i had some physical therapy.

mostly involved massage and stretching. my foot dr told me i needed better

orthodics, i haven't tried this yet as i am still searching to see if i can get

some

from medicare. i just got a brochure from a company called dr comfort, but the

dr is over 30 miles away. i'm gonna xall and see if i can find one closer.

kathy in il