Starting a Plagio Database for CAPPS

[Guest guest]

Hello Everyone,

Wow, a lot has happened in the last day and half. i got her

band! YAY! And she slept beautifully all night Thurs night and last

night. I was SO surprised that I actually woke up about 4 times each

night and went in to check on her to make sure everything was

okay. )

I still have a lot of posts to catch up on, but I wanted to put this

out for you folks to read. I talked at length with Pitchke

about the direction that CAPPS is going to take in the new year, and

I think we really have some great ideas.

One of the things that I need to do to fulfill my end of the Plagio

side is get a database going of Plagio families. I will not take the

existing database that is in the e-group, so I was hoping you could

all send me your information. What I need is :

Your name

Your address

Your e-mail address

Your phone number (optional)

Your Child's name

Your Child's Date of Birth

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate or

severe?

If Plagiocephaly, what side is the flatenning on?

Is Torticollis present?

To what degree? Mild, moderate, or severe?

What side of the neck is the tort on?

Is facial asymmetry present?

To what degree? Mild, moderate, or severe?

Was the child born with the Plagio, etc.?

Did you opt for treatment?

Was repositioning affective?

What percent of correction was had?

What type of band/helmet was used? How long was it worn?

What percent of correction was had?

I know this is a lot of information. I am hoping to have a working

database so that we can draw statistics from it, and really get some

hard core figures going. If you cannot answer all the questions

because your child is still in treatment or just beginning, that is

fine send what you can. You can always e-mail me at a later date and

I will update your information.

Please now that I will NEVER share information with anyone that is

not a CAPPS staff member unless I have your express permission.

Please e-mail me directly at angandjaya@... . Also just so

everyone knows, I now have an official title with CAPPS, I am now the

Director of the Positional Plagiocephaly Division, as well as the co-

founder of the new CAPPS. )

Thank you SO much everyone!

Sincerely,

Jaya Dong

Director of Positional Plagiocephaly Division of CAPPS

[Guest guest]

,

A very valid question.

CAPPS is the new non profit organization that is evolving from CAPS.

If you go to www.caps2000.org you will see the CAPS website. Right

now CAPS stands for Craniosynostosis and Parents Support, after I

paired up with Pitchke the founder of CAPS we added

Positional Plagiocephaly to the organization. The new non profit

organization will be named CAPPS to stand for Craniosynostosis And

Positional Plagiocephaly Support.

We are dedicated to spreading information and in educating the

medical community as well as the public. We are also dedicated to

supporting families that are dealing with either disorder and helping

them to find information as well as helping to find appropriate

medical care in their area (thus the state contacts and soon the

state medical contacts).

If you have any further questions that are not answered by visiting

the site, please feel free to e-mail me at angandjaya@...

also please note that the Plagio side is still incomplete. I will be

adding a PlagioKids section, a section on helpful links, a section

to help with insurance companies, as well as a section devoted to

detailed pictures of casting.

Sincerely,

Jaya Dong

Director Positional Plagiocephaly Division of CAPPS

> May be a dumb question, but what is CAPPS?

>

[Guest guest]

Jaya:

Congrats to you and your new title!! And for all of your hard

work!

I'll send my info to your private email ASAP

Kendra

Jaya Dong wrote:

Hello Everyone,

Wow, a lot has happened in the last day and half. i got

her

band! YAY! And she slept beautifully all night Thurs

night and last

night. I was SO surprised that I actually woke up about 4 times

each

night and went in to check on her to make sure everything was

okay. )

I still have a lot of posts to catch up on, but I wanted to put

this

out for you folks to read. I talked at length with

Pitchke

about the direction that CAPPS is going to take in the new year,

and

I think we really have some great ideas.

One of the things that I need to do to fulfill my end of the Plagio

side is get a database going of Plagio families. I will not

take the

existing database that is in the e-group, so I was hoping you could

all send me your information. What I need is :

Your name

Your address

Your e-mail address

Your phone number (optional)

Your Child's name

Your Child's Date of Birth

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

severe?

If Plagiocephaly, what side is the flatenning on?

Is Torticollis present?

To what degree? Mild, moderate, or severe?

What side of the neck is the tort on?

Is facial asymmetry present?

To what degree? Mild, moderate, or severe?

Was the child born with the Plagio, etc.?

Did you opt for treatment?

Was repositioning affective?

What percent of correction was had?

What type of band/helmet was used? How long was it worn?

What percent of correction was had?

I know this is a lot of information. I am hoping to have a

working

database so that we can draw statistics from it, and really get

some

hard core figures going. If you cannot answer all the questions

because your child is still in treatment or just beginning, that

is

fine send what you can. You can always e-mail me at a later

date and

I will update your information.

Please now that I will NEVER share information with anyone that

is

not a CAPPS staff member unless I have your express permission.

Please e-mail me directly at angandjaya@... . Also just

so

everyone knows, I now have an official title with CAPPS, I am now

the

Director of the Positional Plagiocephaly Division, as well as the

co-

founder of the new CAPPS. )

Thank you SO much everyone!

Sincerely,

Jaya Dong

Director of Positional Plagiocephaly Division of CAPPS

[Guest guest]

Your name

Kendra Garvey

Your address

57 Somerset Cres. S.W.

Calgary, Alberta

T2Y 3V8

Your e-mail address

kbgarv@...

Your phone number (optional)

(403) 249-0265

Your Child's name

Hanna Elise Garvey

Your Child's Date of Birth

October 25th, 1999

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Plagiocephaly

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate or

severe?

Severe

If Plagiocephaly, what side is the flatenning on?

Right side

Is Torticollis present?

No

To what degree? Mild, moderate, or severe?

N/A

What side of the neck is the tort on?

N/A

Is facial asymmetry present?

Yes

To what degree? Mild, moderate, or severe?

Mild-moderate

Was the child born with the Plagio, etc.?

Yes, not documented

Did you opt for treatment?

Yes

Was repositioning affective?

Not at all

What percent of correction was had?

0%

What type of band/helmet was used? How long was it worn?

DOC Band, 5 months

What percent of correction was had?

85%

Jaya Dong wrote:

Hello Everyone,

Wow, a lot has happened in the last day and half. i got

her

band! YAY! And she slept beautifully all night Thurs

night and last

night. I was SO surprised that I actually woke up about 4 times

each

night and went in to check on her to make sure everything was

okay. )

I still have a lot of posts to catch up on, but I wanted to put

this

out for you folks to read. I talked at length with

Pitchke

about the direction that CAPPS is going to take in the new year,

and

I think we really have some great ideas.

One of the things that I need to do to fulfill my end of the Plagio

side is get a database going of Plagio families. I will not

take the

existing database that is in the e-group, so I was hoping you could

all send me your information. What I need is :

Your name

Your address

Your e-mail address

Your phone number (optional)

Your Child's name

Your Child's Date of Birth

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

severe?

If Plagiocephaly, what side is the flatenning on?

Is Torticollis present?

To what degree? Mild, moderate, or severe?

What side of the neck is the tort on?

Is facial asymmetry present?

To what degree? Mild, moderate, or severe?

Was the child born with the Plagio, etc.?

Did you opt for treatment?

Was repositioning affective?

What percent of correction was had?

What type of band/helmet was used? How long was it worn?

What percent of correction was had?

I know this is a lot of information. I am hoping to have a

working

database so that we can draw statistics from it, and really get

some

hard core figures going. If you cannot answer all the questions

because your child is still in treatment or just beginning, that

is

fine send what you can. You can always e-mail me at a later

date and

I will update your information.

Please now that I will NEVER share information with anyone that

is

not a CAPPS staff member unless I have your express permission.

Please e-mail me directly at angandjaya@... . Also just

so

everyone knows, I now have an official title with CAPPS, I am now

the

Director of the Positional Plagiocephaly Division, as well as the

co-

founder of the new CAPPS. )

Thank you SO much everyone!

Sincerely,

Jaya Dong

Director of Positional Plagiocephaly Division of CAPPS

[Guest guest]

Sorry guys, I meant to send that straight to Jaya!!

Kendra

& Kendra wrote:

Your name

Kendra Garvey

Your address

57 Somerset Cres. S.W.

Calgary, Alberta

T2Y 3V8

Your e-mail address

kbgarv@...

Your phone number (optional)

(403) 249-0265

Your Child's name

Hanna Elise Garvey

Your Child's Date of Birth

October 25th, 1999

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Plagiocephaly

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate or

severe?

Severe

If Plagiocephaly, what side is the flatenning on?

Right side

Is Torticollis present?

No

To what degree? Mild, moderate, or severe?

N/A

What side of the neck is the tort on?

N/A

Is facial asymmetry present?

Yes

To what degree? Mild, moderate, or severe?

Mild-moderate

Was the child born with the Plagio, etc.?

Yes, not documented

Did you opt for treatment?

Yes

Was repositioning affective?

Not at all

What percent of correction was had?

0%

What type of band/helmet was used? How long was it worn?

DOC Band, 5 months

What percent of correction was had?

85%

Jaya Dong wrote:

Hello Everyone,

Wow, a lot has happened in the last day and half. i got

her

band! YAY! And she slept beautifully all night Thurs

night and last

night. I was SO surprised that I actually woke up about 4 times

each

night and went in to check on her to make sure everything was

okay. )

I still have a lot of posts to catch up on, but I wanted to put

this

out for you folks to read. I talked at length with

Pitchke

about the direction that CAPPS is going to take in the new year,

and

I think we really have some great ideas.

One of the things that I need to do to fulfill my end of the Plagio

side is get a database going of Plagio families. I will not

take the

existing database that is in the e-group, so I was hoping you could

all send me your information. What I need is :

Your name

Your address

Your e-mail address

Your phone number (optional)

Your Child's name

Your Child's Date of Birth

What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

severe?

If Plagiocephaly, what side is the flatenning on?

Is Torticollis present?

To what degree? Mild, moderate, or severe?

What side of the neck is the tort on?

Is facial asymmetry present?

To what degree? Mild, moderate, or severe?

Was the child born with the Plagio, etc.?

Did you opt for treatment?

Was repositioning affective?

What percent of correction was had?

What type of band/helmet was used? How long was it worn?

What percent of correction was had?

I know this is a lot of information. I am hoping to have a

working

database so that we can draw statistics from it, and really get

some

hard core figures going. If you cannot answer all the questions

because your child is still in treatment or just beginning, that

is

fine send what you can. You can always e-mail me at a later

date and

I will update your information.

Please now that I will NEVER share information with anyone that

is

not a CAPPS staff member unless I have your express permission.

Please e-mail me directly at angandjaya@... . Also just

so

everyone knows, I now have an official title with CAPPS, I am now

the

Director of the Positional Plagiocephaly Division, as well as the

co-

founder of the new CAPPS. )

Thank you SO much everyone!

Sincerely,

Jaya Dong

Director of Positional Plagiocephaly Division of CAPPS

[Guest guest]

Kendra,

Woops! ) Thank you very much! I just forwarded this to myself so

that I have it in my e-mail.

Thank you very much,

Jaya

>

> > Hello Everyone,

> >

> > Wow, a lot has happened in the last day and half. i got her

> > band! YAY! And she slept beautifully all night Thurs night and

last

> > night. I was SO surprised that I actually woke up about 4 times

each

> > night and went in to check on her to make sure everything was

> > okay. )

> >

> > I still have a lot of posts to catch up on, but I wanted to put

this

> > out for you folks to read. I talked at length with

Pitchke

> > about the direction that CAPPS is going to take in the new year,

and

> > I think we really have some great ideas.

> >

> > One of the things that I need to do to fulfill my end of the

Plagio

> > side is get a database going of Plagio families. I will not take

the

> > existing database that is in the e-group, so I was hoping you

could

> > all send me your information. What I need is :

> >

> > Your name

> >

> > Your address

> >

> > Your e-mail address

> >

> > Your phone number (optional)

> >

> > Your Child's name

> >

> > Your Child's Date of Birth

> >

> > What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

> >

> > Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild

moderate or

> > severe?

> >

> > If Plagiocephaly, what side is the flatenning on?

> >

> > Is Torticollis present?

> >

> > To what degree? Mild, moderate, or severe?

> >

> > What side of the neck is the tort on?

> >

> > Is facial asymmetry present?

> >

> > To what degree? Mild, moderate, or severe?

> >

> > Was the child born with the Plagio, etc.?

> >

> > Did you opt for treatment?

> >

> > Was repositioning affective?

> >

> > What percent of correction was had?

> >

> > What type of band/helmet was used? How long was it worn?

> >

> > What percent of correction was had?

> >

> > I know this is a lot of information. I am hoping to have a

working

> > database so that we can draw statistics from it, and really get

some

> > hard core figures going. If you cannot answer all the questions

> > because your child is still in treatment or just beginning, that

is

> > fine send what you can. You can always e-mail me at a later date

and

> > I will update your information.

> >

> > Please now that I will NEVER share information with anyone that is

> > not a CAPPS staff member unless I have your express permission.

> >

> > Please e-mail me directly at angandjaya@e... . Also just so

> > everyone knows, I now have an official title with CAPPS, I am now

the

> > Director of the Positional Plagiocephaly Division, as well as the

co-

> > founder of the new CAPPS. )

> >

> > Thank you SO much everyone!

> >

> > Sincerely,

> > Jaya Dong

> > Director of Positional Plagiocephaly Division of CAPPS

> >

> >

> >

> >

> >

> > eGroups Sponsor

> [Click Here!]

> >

> >

[Guest guest]

Okay, I've provided this info below, but I was a bit confused about mild

vs. moderate vs. severe - we were never told anything about the extent

of 's plagio. I've said that she's moderate, but does anyone have

any guidelines on how they determine that?

Thanks!

Becky & (5/4/00, banded since 10/13/00)

Plano, TX

> Your name

Keck

>

> Your address

2404 Briarwood Drive

Plano, TX 75074

>

> Your e-mail address

>

becky@...

> Your phone number (optional)

>

972/423-4906

> Your Child's name

>

Aileene Elfriede Keck

> Your Child's Date of Birth

>

May 4, 2000

> What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

>

Plagiocephaly

> Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate or

> severe?

>

Moderate

> If Plagiocephaly, what side is the flatenning on?

>

Originally, the right side behind her ear. Due to respositioning,

another flat spot developed behind her left ear.

> Is Torticollis present?

>

Yes, although it hasn't been " officially " diagnosed - CT says her

muscles are " tighter " on the left than the right.

> To what degree? Mild, moderate, or severe?

>

Mild

> What side of the neck is the tort on?

>

Left

> Is facial asymmetry present?

>

Yes

> To what degree? Mild, moderate, or severe?

>

Moderate

> Was the child born with the Plagio, etc.?

>

No

> Did you opt for treatment?

>

Yes

> Was repositioning affective?

>

No

> What percent of correction was had?

>

None. Respositioning actually resulted in ANOTHER flat spot on the

other side.

> What type of band/helmet was used? How long was it worn?

>

DOC band. She's been in it since October 13.

> What percent of correction was had?

>

Unclear at this time, since treatment is in progress. We've seen good

correction in the shape of the back of her head, her flat spots are

rounding out, but so far her facial asymmetry is not responding as well

as we had hoped - we're hoping that's next.

> I know this is a lot of information. I am hoping to have a working

> database so that we can draw statistics from it, and really get some

> hard core figures going. If you cannot answer all the questions

> because your child is still in treatment or just beginning, that is

> fine send what you can. You can always e-mail me at a later date and

> I will update your information.

>

> Please now that I will NEVER share information with anyone that is

> not a CAPPS staff member unless I have your express permission.

>

> Please e-mail me directly at angandjaya@... . Also just so

> everyone knows, I now have an official title with CAPPS, I am now the

> Director of the Positional Plagiocephaly Division, as well as the co-

> founder of the new CAPPS. )

>

> Thank you SO much everyone!

>

> Sincerely,

> Jaya Dong

> Director of Positional Plagiocephaly Division of CAPPS

>

>

>

[Guest guest]

Becky:

I don't think there is an exact criteria for making this assessment.

There is no specific measurement that says "severe", or anything.

A doctor will give you an opinion based on his/her experience.

One guideline to use (for yourself) is to visit the Cranial Tech. site.

They have a baby's picture posted there, and rate him as severe.

You could probably make your own "rating" by comparing to this photo.

Sorry I couldn't be more helpful, and if any of you "official" Cranial

Tech folks have anything else to add, please do!!!

Kendra

Becky Keck wrote:

Okay, I've provided this info below, but I was a bit confused about

mild

vs. moderate vs. severe - we were never told anything about the

extent

of 's plagio. I've said that she's moderate, but does

anyone have

any guidelines on how they determine that?

Thanks!

Becky & (5/4/00, banded since 10/13/00)

Plano, TX

> Your name

Keck

>

> Your address

2404 Briarwood Drive

Plano, TX 75074

>

> Your e-mail address

>

becky@...

> Your phone number (optional)

>

972/423-4906

> Your Child's name

>

Aileene Elfriede Keck

> Your Child's Date of Birth

>

May 4, 2000

> What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

>

Plagiocephaly

> Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

> severe?

>

Moderate

> If Plagiocephaly, what side is the flatenning on?

>

Originally, the right side behind her ear. Due to respositioning,

another flat spot developed behind her left ear.

> Is Torticollis present?

>

Yes, although it hasn't been "officially" diagnosed - CT says her

muscles are "tighter" on the left than the right.

> To what degree? Mild, moderate, or severe?

>

Mild

> What side of the neck is the tort on?

>

Left

> Is facial asymmetry present?

>

Yes

> To what degree? Mild, moderate, or severe?

>

Moderate

> Was the child born with the Plagio, etc.?

>

No

> Did you opt for treatment?

>

Yes

> Was repositioning affective?

>

No

> What percent of correction was had?

>

None. Respositioning actually resulted in ANOTHER flat spot

on the

other side.

> What type of band/helmet was used? How long was it worn?

>

DOC band. She's been in it since October 13.

> What percent of correction was had?

>

Unclear at this time, since treatment is in progress. We've

seen good

correction in the shape of the back of her head, her flat spots

are

rounding out, but so far her facial asymmetry is not responding

as well

as we had hoped - we're hoping that's next.

> I know this is a lot of information. I am hoping to have

a working

> database so that we can draw statistics from it, and really get

some

> hard core figures going. If you cannot answer all the questions

> because your child is still in treatment or just beginning, that

is

> fine send what you can. You can always e-mail me at a later

date and

> I will update your information.

>

> Please now that I will NEVER share information with anyone that

is

> not a CAPPS staff member unless I have your express permission.

>

> Please e-mail me directly at angandjaya@... . Also

just so

> everyone knows, I now have an official title with CAPPS, I am

now the

> Director of the Positional Plagiocephaly Division, as well as

the co-

> founder of the new CAPPS. )

>

> Thank you SO much everyone!

>

> Sincerely,

> Jaya Dong

> Director of Positional Plagiocephaly Division of CAPPS

>

>

>

[Guest guest]

Jaya, thank you for hard work. I have put Sam's information below.

Take care,

> Your name

> Luetje

> Your address

> 415 E 71 Terrace, Kansas City, MO 64131

> Your e-mail address

> andrewlu@...

> Your phone number (optional)

> 816-333-5547

> Your Child's name

> Sam Henry Luetje

> Your Child's Date of Birth

> Jan 30, 2000

> What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

> Plagiocephaly

> Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

> severe?

> Severe

> If Plagiocephaly, what side is the flatenning on?

> Back right and front left

> Is Torticollis present?

> Yes

> To what degree? Mild, moderate, or severe?

> Severe

> What side of the neck is the tort on?

> Right

> Is facial asymmetry present?

> Yes

> To what degree? Mild, moderate, or severe?

> Moderate

> Was the child born with the Plagio, etc.?

> Possibly. My wife had complications during birth.

> Did you opt for treatment?

> Yes

> Was repositioning affective?

> No

> What percent of correction was had?

> 0%

> What type of band/helmet was used? How long was it worn?

> DOC band - it will be worn from 5-7 months

> What percent of correction was had?

To date, he has had a 50% correction.

> Hello Everyone,

>

> Wow, a lot has happened in the last day and half. i got her

> band! YAY! And she slept beautifully all night Thurs night and

last

> night. I was SO surprised that I actually woke up about 4 times each

> night and went in to check on her to make sure everything was

> okay. )

>

> I still have a lot of posts to catch up on, but I wanted to put this

> out for you folks to read. I talked at length with Pitchke

> about the direction that CAPPS is going to take in the new year, and

> I think we really have some great ideas.

>

> One of the things that I need to do to fulfill my end of the Plagio

> side is get a database going of Plagio families. I will not take

the

> existing database that is in the e-group, so I was hoping you could

> all send me your information. What I need is :

>

> Your name

>

> Your address

>

> Your e-mail address

>

> Your phone number (optional)

>

> Your Child's name

>

> Your Child's Date of Birth

>

> What type of head shape?Plagiocephaly,Brachycephaly,Scaphocephaly?

>

> Is the Plagiocephaly, Brachycephaly or Scaphocephaly mild moderate

or

> severe?

>

> If Plagiocephaly, what side is the flatenning on?

>

> Is Torticollis present?

>

> To what degree? Mild, moderate, or severe?

>

> What side of the neck is the tort on?

>

> Is facial asymmetry present?

>

> To what degree? Mild, moderate, or severe?

>

> Was the child born with the Plagio, etc.?

>

> Did you opt for treatment?

>

> Was repositioning affective?

>

> What percent of correction was had?

>

> What type of band/helmet was used? How long was it worn?

>

> What percent of correction was had?

>

> I know this is a lot of information. I am hoping to have a working

> database so that we can draw statistics from it, and really get some

> hard core figures going. If you cannot answer all the questions

> because your child is still in treatment or just beginning, that is

> fine send what you can. You can always e-mail me at a later date

and

> I will update your information.

>

> Please now that I will NEVER share information with anyone that is

> not a CAPPS staff member unless I have your express permission.

>

> Please e-mail me directly at angandjaya@e... . Also just so

> everyone knows, I now have an official title with CAPPS, I am now

the

> Director of the Positional Plagiocephaly Division, as well as the

co-

> founder of the new CAPPS. )

>

> Thank you SO much everyone!

>

> Sincerely,

> Jaya Dong

> Director of Positional Plagiocephaly Division of CAPPS