New to group

[Guest guest]

Thank-you Marci for the nice welcome... wears a DOC band!!

> Hello Dianne and welcome! Boy are you having going to be in good

company! We have soooo many parents of twins in this group! What kind

of band is our son wearing - DOC or STAR? Sounds like you have

already seen some good improvement - Yippee!! Seeing that improvement

makes it all worth it.

>

> I look forward to getting to know you better and hear of our story!

>

> Marci (Mom to )

> Oklahoma

[Guest guest]

Dianne!!! Hugs! It's me with la!! Did you get my reply to

the IM?? I Hope I am doing it right but you didn't get my last one! I

was asking about your friend but you don't have to answer here! So

happy to see you here!!!!!!!!!

& Gabby---

In Plagiocephaly@y..., " dmwc1017 " <dmwc1017@y...> wrote:

> Hello all,

>

> Just happened to stumble across this group. My name is Dianne and I

> have almost 7 month old twins. My son currently wears a band, he

> started at 17mm and is now down to 7mm. He started wearing the band

> on March 1, 2002. I look forward to getting to know all of you!

>

> Dianne

[Guest guest]

Hello there,

Just wanted to let you know that I too went the alternative route until I

couldn't stand it any more. Only after I had tried everything under the sun

or so I thought, did I seek the treatment of a rheumatologist. That was the

day I started on my way to a more comfortable life.

I was very apprehensive about taking the methotrexate, (I read the side

effects) scared me to death. Now I have a very good rheumy that I really

trust. and I feel confident about my treatment.

My thoughts are that you have to settle down and do a real soul and mental

search of yourself and then meet this thing headon. WOW, deep, huh?

Judy in Indy

[Guest guest]

I¹ve taken grape seed but I can¹t say if it does any good. Over the years

I¹ve tried many different vitamin mineral and herbal combinations. Right

now I am eliminating most of the supplements and concentrating on getting a

balanced diet that consists of the foods high in the things I¹ve read that

should help RA. I take caltrate plus, Carlson¹s cod liver oil (yuck!)

glucosamine sulfate and cat¹s claw. I used to take up to 30 different

vitamins, minerals and herbs a day. Now I plan my food around nutrition and

skip all the supplements except the ones for my bones since I have OP.

I¹m glad you aren¹t opposed to traditional meds. I was completely

alternative for several years and I sometimes believe I did more harm to

myself by not taking meds. I¹m looking forward to getting to know you.

a

On 5/21/02 12:51 PM, " LilDoc4388 " <lildoc4388@...> wrote:

> hello, I am new to this group but have suffered with RA since 1985-

> it seems to be escalating and im trying to do the natural route with

> herbs and exercises- but now going to let the doc prescribe something

> to try that may even me a little out- Im curious as to if anyone else

> in the group takes Pygnogenols- which is a grape seed and pine bark

> combination- am looking forward to sharing ideas

>

>

>

>

[Guest guest]

thank you for the warm welcome- I actually started on a drug called Bextra

today so we shall see- Im going to start a good exercies program- water type and

treadmill- Ive been going through the acceptance stage even after all these

years- I guess I just now realize that this is not going away and that I need

to control it rather then IT control me I am going to do everything I can to

keep doing the things I love- looking forward to the support of this group

a <paula54@...> wrote: I¹ve taken grape seed but I can¹t say if it

does any good. Over the years

I¹ve tried many different vitamin mineral and herbal combinations. Right

now I am eliminating most of the supplements and concentrating on getting a

balanced diet that consists of the foods high in the things I¹ve read that

should help RA. I take caltrate plus, Carlson¹s cod liver oil (yuck!)

glucosamine sulfate and cat¹s claw. I used to take up to 30 different

vitamins, minerals and herbs a day. Now I plan my food around nutrition and

skip all the supplements except the ones for my bones since I have OP.

I¹m glad you aren¹t opposed to traditional meds. I was completely

alternative for several years and I sometimes believe I did more harm to

myself by not taking meds. I¹m looking forward to getting to know you.

a

On 5/21/02 12:51 PM, " LilDoc4388 " <lildoc4388@...> wrote:

> hello, I am new to this group but have suffered with RA since 1985-

> it seems to be escalating and im trying to do the natural route with

> herbs and exercises- but now going to let the doc prescribe something

> to try that may even me a little out- Im curious as to if anyone else

> in the group takes Pygnogenols- which is a grape seed and pine bark

> combination- am looking forward to sharing ideas

>

>

>

>

[Guest guest]

,

So glad to hear that your little one is showing improvement with the band!!!

Hindsight is always 20/20 and I wish too that Doctors would be more

informative with parents about the potential for plagio and ways to ensure

that it will not progress by effective repositioning- hopefully things will

start to change soon so that other parents will not have to go through this

with their children. Good luck with the band and please post updates-

graduation date anytime soon?!

' Mom

[Guest guest]

Hi ,

I'm sorry to hear that your dr. prescribed to the " it will round out

on it's own " therory. Unfortunately, this is a common story here on

the board.

I'm glad you caught it early with your new baby though and was aware

of the treatment options :-).

One of my concerns is that plagio will happen again with our second

baby. (No I'm not pregnant yet..LOL) Would you be able to tell us

if your baby's plagio was present at birth or due to external

pressure.

I always wonder if my children will be more prone to developping a

flat head because my first son had it. That might sound crazy but

since this whole thing started...I've had the weirdest things cross

my mind.

Thanks...

Dana (mom2)

Ont.

>

> I have two chldren with plagiocephaly. One is 3 1/2 and the

other is 7 months. When my older son was a baby the side of his head

was very flat. I asked our Doctor's at every visit about it. They

all told me it would fix it's self. Well it never did. When we

finally had a doctor tell us about the band's and give us a referral

he was two and it was too late. My younger son has been wearing a

cranial band for three months and is doing great. You know the old

saying " I wish I new then what I know now. "

> We are still fighting with Bluecross & Blueshield to cover the

band.

>

[Guest guest]

Hi & welcome to our group:

I'm soooo sorry to hear how uninformed you were with your older son's

plagio. It's such a shame hearing stories similar to yours over &

over again . Drs. just don't seem to take this seriously & give us

parents the good old " it will round out on it's own " story. By the

time you know if it really will round on it's own or not, it's too

late to do any type of band/helmet therapy. Have you noticed ANY

improvement of your older son's plagio over time? Or has it

basically remained unchanged?

I am happy to hear though that you were able to get your younger son

into a band. What type of band is it? DOCband, STARband? That's

great that you've already seen such good improvement!

On what grounds is your ins. denying coverage? There are a lot of

helpful ins. battle tips in our " bookmarks " section of our group.

Also check out www.plagiocephaly.org/support for other good Insurance

Issue tips.

Welcome again to our group.

Debbie Abby's mom DOCGrad

MI

>

> I have two chldren with plagiocephaly. One is 3 1/2 and the other

is 7 months. When my older son was a baby the side of his head was

very flat. I asked our Doctor's at every visit about it. They all

told me it would fix it's self. Well it never did. When we finally

had a doctor tell us about the band's and give us a referral he was

two and it was too late. My younger son has been wearing a cranial

band for three months and is doing great. You know the old saying " I

wish I new then what I know now. "

> We are still fighting with Bluecross & Blueshield to cover the

band.

>

[Guest guest]

<<. I was completely

alternative for several years and I sometimes believe I did more harm to

myself by not taking meds. >>

I did the same thing. For four years I tried every imaginable dietary

intervention as well as many herbal remedies. I am currently on a wheat

free-dairy free diet, but I'm not sure how much good it is doing. I only

broke down and talked to the doctor about my symptoms late last year, after

the pain got too severe, and after trying NSAIDS for awhile, he did the

blood work and I was diagnosed.

Carol in FL

Re: [ ] new to group

I¹ve taken grape seed but I can¹t say if it does any good. Over the years

I¹ve tried many different vitamin mineral and herbal combinations. Right

now I am eliminating most of the supplements and concentrating on getting

a

balanced diet that consists of the foods high in the things I¹ve read that

should help RA. I take caltrate plus, Carlson¹s cod liver oil (yuck!)

glucosamine sulfate and cat¹s claw. I used to take up to 30 different

vitamins, minerals and herbs a day. Now I plan my food around nutrition

and

skip all the supplements except the ones for my bones since I have OP.

I¹m glad you aren¹t opposed to traditional meds. I was completely

alternative for several years and I sometimes believe I did more harm to

myself by not taking meds. I¹m looking forward to getting to know you.

a

On 5/21/02 12:51 PM, " LilDoc4388 " <lildoc4388@...> wrote:

> hello, I am new to this group but have suffered with RA since 1985-

> it seems to be escalating and im trying to do the natural route with

> herbs and exercises- but now going to let the doc prescribe something

> to try that may even me a little out- Im curious as to if anyone else

> in the group takes Pygnogenols- which is a grape seed and pine bark

> combination- am looking forward to sharing ideas

>

>

>

>

[Guest guest]

,

Welcome to the group and thanks for the intro. I'm sorry to hear that your dr

would not listen until it was too late for your first sweet baby. I'm glad

that you were able to get the band for younger son. I hope it is working well

for him and that you are seeing some good correction.

Welcome to the group!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Karissa,

Welcome to the group! We have a few repositioning Moms on board. I'm

sure they'll chime in with some really good tips! I tried

repositioning with my daughter with no success due to her having

torticollis. got her DOCband at 11 months and one week old.

I'm hoping for at least some correction, due to her being an " older "

baby.

Your son is at a great age to get great correction! I know that

repositioning works if your diligent with it. It takes longer to see

improvement with repositioning, but you will see improvement. You

have to be totally dedicated to it. Where are you located? Maybe we

have someone on board that lives near you that has used a locally

made helmet. They're cheaper and work just as well. If that is the

route your going to take.

Check out this link it is a repositioning success story and she has a

lot of tips!

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

Again welcome to the group and please keep us posted about Ozzy.

> hello everyone, my name is karissa and i have a 5 1/2 month old boy

> named ozzy. ozzy has plagio and has been seen by a neurosurgeon. we

> have been trying positional therapy for about 6 weeks now. i have

> noticed some change, but his head is still flat. the doctor says if

> i do nothing i can expect a 50% improvement. i am torn between doc

> band therapy or taking the wait and see aproach. i suppose that my

> health insurance will make that decision for me though, i can't

> afford $4k. has anyone had dramatic improvment with positional

> therapy?

[Guest guest]

thanks stacy,

after looking at the link you gave me i'm already exhausted!

hopefully i can get the doc band. we live in california so doc band

is closest to us, although star band is about a 6 hour drive (for

the scanner). by the way, was the casting process horrible? i got

all wiggy looking at casting pictures!

karissa

> > hello everyone, my name is karissa and i have a 5 1/2 month old

boy

> > named ozzy. ozzy has plagio and has been seen by a neurosurgeon.

we

> > have been trying positional therapy for about 6 weeks now. i

have

> > noticed some change, but his head is still flat. the doctor says

if

> > i do nothing i can expect a 50% improvement. i am torn between

doc

> > band therapy or taking the wait and see aproach. i suppose that

my

> > health insurance will make that decision for me though, i can't

> > afford $4k. has anyone had dramatic improvment with positional

> > therapy?

[Guest guest]

Karissa,

I too found repositioning exhausting, I think b/c I have 4 other kids.

's casting was not that great. I think her age had a lot to do

with it. It's really not that bad and it doesn't hurt them at all.

They just don't like to be held down. It's over very fast, like 10

minutes. As soon as you pick them up, they're happy as can be!

Cranial Tech. has a payment plan. Who told you the DOCband costs

$4000.00? I live in NY and they cost $3000.00 here. $600.00 at

casting and $600.00 a month for 4 months. Are you sure your insurance

won't cover it? Who is your insurance compamy? Maybe someone here has

them too and can let you know if they paid or not.

I have to ask.. how'd you pick your sons name?

> > > hello everyone, my name is karissa and i have a 5 1/2 month old

> boy

> > > named ozzy. ozzy has plagio and has been seen by a

neurosurgeon.

> we

> > > have been trying positional therapy for about 6 weeks now. i

> have

> > > noticed some change, but his head is still flat. the doctor

says

> if

> > > i do nothing i can expect a 50% improvement. i am torn between

> doc

> > > band therapy or taking the wait and see aproach. i suppose that

> my

> > > health insurance will make that decision for me though, i can't

> > > afford $4k. has anyone had dramatic improvment with positional

> > > therapy?

[Guest guest]

HI Karissa & welcome to our group!

We've had/have several members who have repositioned their baby with

good success and others who haven't had much success. It all depends

on the baby. It is great though that you have noticed some

improvement in the 6 wks you have been repositioning Ozzy!

What health insurance do you have? What Cranial Tech. location are

you near?

Deciding whether or not to band is a very difficult decision to

make. Whatever yuo decide, we'll support you. Good luck with

everything, please keep us posted on Ozzy's progress & your decision.

Welcome again.

Debbie Abby's mom DOCGrad

MI

> hello everyone, my name is karissa and i have a 5 1/2 month old boy

> named ozzy. ozzy has plagio and has been seen by a neurosurgeon. we

> have been trying positional therapy for about 6 weeks now. i have

> noticed some change, but his head is still flat. the doctor says if

> i do nothing i can expect a 50% improvement. i am torn between doc

> band therapy or taking the wait and see aproach. i suppose that my

> health insurance will make that decision for me though, i can't

> afford $4k. has anyone had dramatic improvment with positional

> therapy?

[Guest guest]

Thanks Debbieandabby. I live in land. I don't know of a center

near me. I will check on the internet. Yes, i have a ultrasaucer

and the sitter has a walker that we keep him in..alot. I have also

been giving him more tummy time. And he is starting to sit up on his

own. I hope that there is a center near by that give free checkups.

I spoke with another new mother at my job. Her son is 8months and

he had a flat spot on the right side of his head because he enjoyed

sleeping on the right side. Now that he is rolling over and

crawling, the right side is starting to take shape. I'm hoping the

same will happen to Mikey, but I guess it's better to be safe than

sorry. Thanks

[Guest guest]

I just checked cranialtech.com They are in ndale, VA. How

close is that to you? Most of their centers offer free evaluations

and they are very honest.

It is so difficult making this decision when support and knowledge

in the medical community is so difficult to find.

We banded our son at 5 months. Our ped said that it

would " probably " round out on it's on. We repositioned him from 2-4

months with decent results and then it stagnated. It is such a hard

decision. On one hand you hear of repositioning success stories,

but then in the back of your mind you know that the younger you

band, the better the success. You don't want to lose that time! I

didn't sleep well from the time he was 2 months until the night we

decided to band. It was nice to have my mind made up - one way or

the other- because it was eating away at me. The good news is that

he now has a rounder head than I think most other infants!

You might want to compare noggins in the photos section.

Dane's mom DOC Grad

> Thanks Debbieandabby. I live in land. I don't know of a

center

> near me. I will check on the internet. Yes, i have a ultrasaucer

> and the sitter has a walker that we keep him in..alot. I have

also

> been giving him more tummy time. And he is starting to sit up on

his

> own. I hope that there is a center near by that give free

checkups.

> I spoke with another new mother at my job. Her son is 8months

and

> he had a flat spot on the right side of his head because he

enjoyed

> sleeping on the right side. Now that he is rolling over and

> crawling, the right side is starting to take shape. I'm hoping

the

> same will happen to Mikey, but I guess it's better to be safe than

> sorry. Thanks

[Guest guest]

Thanks ,

I have no idea where that is, but I will look it up. I will take a

look at the photos...but I still don't know what i'm going to do. My

husband will be home from his business trip this weekend. I will

discuss my concerns with him and see what he says. Thanks for your

help!!

[Guest guest]

BTW.. what's the deal with the cost? is it normally covered by

insurance?

[Guest guest]

Some companies seem to be very good at paying, others are

inconsistent and some others are down right lousy! We lost all of

our appeals, but I would say at least half had gotten it paid. you

can check out some of this info in the database section.

Dane's mom DOC Grad

> BTW.. what's the deal with the cost? is it normally covered by

> insurance?

[Guest guest]

Hello Karissa and welcome.

We have had members who received outstanding results from repositioning alone.

Some members have received good correction with repositioning, but wanted more

and ultimately decided to get the band. Some members babies have torticollis

which made the repositioning a nightmare so they got a band to help with the

head so they could focus on correcting the tort. Banding offers dramatic results

in a relatively short period of time. Repositioning is less dramatic right away

(although it can be over time) and usually requires a longer stretch of time to

see improvement. The decision to band or to reposition is totally yours, of

course, and I'm certain that you will make the right decision for Ozzy. I hope

your insurance agrees to pay so that issue won't hold you back if you wish to

get a band.

Best of wishes to you as you decide what to do. Keep us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

> organic beef and pork is another thing that has eluded me. If

anyone has

> any information where I might find resources for these things

I'd really

> appreciate it.

Pennie, Meadow Raised Meats is a cooperatiave of NY family

farms, shipping costs from them to NJ shouldn't be too

expensive, and they seem to have a good selection

http://www.meadowraisedmeats.com/

Aubin

[Guest guest]

>>>>>Last summer I began feeding my dogs a raw diet and needed to find fresh

chicken as I now live in Northern NJ and am just finding co-ops and such.

Bingo...found a great poultry farm and decided to buy some fresh chicken for

my family at the same time. As soon as I bit into that fresh chicken all

the memories of growing up came flooding back....store bought chicken can't

even compare the goodness of fresh.

----->hi pennie,

welcome to the group! i have no idea what diet you are feeding your dogs,

but i just want to throw out a word of caution on chicken-based diets, since

you mentioned chicken. chicken fat has about a 20:1 EFA ratio - very

unhealthy! (however, pastured chickens have a lower ratio). diets with such

high EFA ratios have been linked to many chronic and degenerative diseases

such as cancer, heart disease, arthitis, etc.

i feed a raw diet to my dogs too, but am careful to keep chicken to a

minimum. i know billinghurst emphasized chicken in his first book " give your

dog a bone " but has since tried to clear it up by letting folks know that he

really emphasizes *variety.* (chicken is also low in some other nutrients

that are abundant in red meat/organ/bone).

on another note, if you'd like to locate local grass-fed

meat/organs/bone/dairy, here's an online national database of local farms,

which might help:

http://www.localharvest.org

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

http://members.bellatlantic.net/~vze3shjg/

mailto:s.fisher22@...

[Guest guest]

Hi,

My name is Patty and I have a daughter and husband with BPES. My daughter, who is 3 1/2, just had the first of 2 surgeries on April 4, 2003 to correct the telecanthus and epicanthal folds. She did well with the surgery but developed an infection which required her to go back to surgery to be drained. However, she is doing well now and recovering well. Her incisions are healing very well and she appears to open her eyes more already. Her MD will correct the drooping eyelids in about 6 months to 1 year. I would be happy to email you if you'd like.

My husband and I were also wondering why the MD said he probably won't be able to play sports. My husband, who also had the corrective surgery done about 28 years ago, was an athlete throughout his whole life, playing baseball and football. It never held him back. He does have the sensitivity to sunlight also, as does my daughter.

Patty

[Guest guest]

Hi,

My name is . My husband and I have a daughter with bpes, but like you, we are still in the discovery stages. Alyssa (our daughter) is only 5 months old but was diagnosed at birth. She has had a hearing test which we believe deafness is a possibility with bpes people , and her hearing is fine. We are of the understanding that people born with bpes have a tendency to have either allot of problems or little or no problems with of course the exception of their eyes which can be either severe of not. Our daughter appears not to have any problems other than her eyes which are moderate. We know that she will require 2 if not 3 surgeries when she is around 4 years of age. She is doing really well.

We have discovered also, that most people with bpes have a light sensitivity and need sunglasses and some extra caution with bright lights. This does appear to affect Alyssa.

I like you, posted a message some weeks ago, and discovered a great support network within the group. I know that someone with a great deal of experience will contact you and will be of tremendous help as they have been to us.

Although our experience is still very limited, I would be happy to email with you anytime.

Can you tell me, do you know why the Dr said he wouldn't ever be able to play sports?

Regards

blepharophimosis new to grouphi,My husband and I adopted a baby who is now 18m old. We knew he had a gentetic problem with his eyes, but since we live in a very rural small towm noone knew anything about it. After taking him to an eye Dr, at All Children's he told us he had Bleph. We don't know where to go from here. I have found this egroup very interesting and helpful so far. We would like to have his eyes corrected if they can be because he really has to tilt his neck back to see. I have neck problems and know that after so many years of him tilting it would probably strain his neck. Also the eye Dr. said he probably wouldn't be able to play sports. We have also noticed how ignorant people can be. We would love more info and would love to talk to another couple who has gone through this for advice.Thanks.

[Guest guest]

Hi,

Thanks for responding so quick. The Dr. said that he

wouldn't be able to play sports because there is no

perifial(sp?) vision. We were also wondering if this could

also affect driving? Our son like your daughter seems to

have no other problems other than a sinus problem which we

don't know if it is related or not. Our Dr.'s here have no

clue as to what Bleph is. He has always been ahead

developmentally and is very verbal. He just seems to run

into things and fall a lot because he doesn't always see

where he is going. Where do you live?

We're in Avon Park, Florida.

Hope

On Thu, 22 Apr 2094 14:45:50 +1200

" Rob & " <bobjnr@...> wrote:

> Hi,

> My name is . My husband and I have a daughter with

> bpes, but like you, we are still in the discovery stages.

> Alyssa (our daughter) is only 5 months old but was

> diagnosed at birth. She has had a hearing test which we

> believe deafness is a possibility with bpes people , and

> her hearing is fine. We are of the understanding that

> people born with bpes have a tendency to have either

> allot of problems or little or no problems with of course

> the exception of their eyes which can be either severe of

> not. Our daughter appears not to have any problems other

> than her eyes which are moderate. We know that she will

> require 2 if not 3 surgeries when she is around 4 years

> of age. She is doing really well.

> We have discovered also, that most people with bpes have

> a light sensitivity and need sunglasses and some extra

> caution with bright lights. This does appear to affect

> Alyssa.

> I like you, posted a message some weeks ago, and

> discovered a great support network within the group. I

> know that someone with a great deal of experience will

> contact you and will be of tremendous help as they have

> been to us.

> Although our experience is still very limited, I would be

> happy to email with you anytime.

> Can you tell me, do you know why the Dr said he wouldn't

> ever be able to play sports?

> Regards

>

> blepharophimosis new to group

>

>

> hi,

> My husband and I adopted a baby who is now 18m old. We

> knew he had

> a gentetic problem with his eyes, but since we live in

> a very rural

> small towm noone knew anything about it. After taking

> him to an eye

> Dr, at All Children's he told us he had Bleph. We

> don't know where

> to go from here. I have found this egroup very

> interesting and

> helpful so far. We would like to have his eyes

> corrected if they

> can be because he really has to tilt his neck back to

> see. I have

> neck problems and know that after so many years of him

> tilting it

> would probably strain his neck. Also the eye Dr. said

> he probably

> wouldn't be able to play sports. We have also noticed

> how ignorant

> people can be. We would love more info and would love

> to talk to

> another couple who has gone through this for advice.

> Thanks.

>

>

>