Hello

[Guest guest]

you'd think so anyways. atleast he still attends class. not sure if he will

return next semister though. kathy in il

[Guest guest]

-Hello Michele,

Welcome to a great informative group. Good for you, your

pediatrician initiated treatment early, you'll have great results.

There are alot of repo tips in files, check them out.

Good luck & hope to hear about good results.

Colleen

-- In Plagiocephaly , " Mahone "

<mahonefamily@e...> wrote:

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

,

Thank you for introducing yourself and telling us about . I'm

very impressed that diagnosis of plagio and tort was made at such a

young age; it is such an advantage to be treating plagio and should

translate into great correction. I'm sure you have read that many of

us went months before our pediatrician addressed our concerns. That

is fantastic that you are starting PT for the tort. Our daughter,

Remy, did not have tort, but it is very common and a lot of parents

here can give you great support on dealing with it. Tort can really

undermine repo success, so as you resolve the tort issue, repo results

should really ramp up.

You sound like you have done your research and have a great game plan.

If you need any additional help or support with repo, please check

out the LINKS section of the group in the REPOSITIONING folder - I

recently added a bunch of products and info. Also, you can check out

the progress photos of and two Lukes, who are younger babies

currently being repo'd. We were able to use repo only to treat Remy's

plagio, and she also has progress photos in the PHOTOS section, if you

would like to take a look. There are also some photos of using

repo techniques/products in the FILES/REPOSITIONING HEADQUARTERS

folder that are really informative and cute, if you haven't already

looked there.

I'd love to see a picture of . Please let me know if I can be of

any help.

Take care,

Christie (Mom to Repo'd Remy)

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came home

and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or continue

repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

Hi ,

Welcome to the group. You're really lucky that your ped took this

seriously. Your baby is at a great younger age. Repsitioning is a

24/7 job, you must be diligent even when is sleeping. But it

does work. I see that Christie has already replied to you, she'll be

more than happy to answer any questions you may have about repo.

Check out this web site, it'll help you with your repo efforts:

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

Please keep us posted on 's progress.

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

, hi and welcome to the group. I'm glad you finally

introduced yourself. What a great ped. Sounds like my daughters!

Great job Doc! Where in Texas are you? I am just South of Dallas

and my daughters cranial specialist was at Childrens, Dr. Hobar. I

see that Christie has already given you some wonderful tips for

repoing and I will wish you luck. Keep us posted on how and

yourself are doing.

Dustie, mom to ,DOCGrad'03

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

Hi ,

Welcome! I hope that we can help you with your repo efforts.

Please feel free to ask questions.

Natasha

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We

went today. Will start PT for the tort and will be trying repo for

the next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting

to know each of you better.

>

> , & in Texas

[Guest guest]

Hi ,

I see that you have received a number of replies already, but I just

wanted to say hello and welcome. Feel free to ask any questions that

you may have. Good luck with your repoing- it is harder with a tort

baby (I was in the same position!) but not impossible.

- mom to Aidan

STARband 8/26/03

GR MI

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

Welcome to the group! Sounds like your ped was right on top of

things from the beginning. You should get good results no matter

what path you end up taking since your little guy is so young. Good

luck w/ the repo and PT!

Kim--Gus' mom

DOC Band 8/21/03

> I just wanted to introduce myself and say hello to everyone. Two

weeks ago at his two month check up, our Pediatrician said that our

son, , had torticollis and plagiocephaly. I immediately came

home and did an internet search to learn all I could about the two

diagnosis and stumbled upon this group. For the last two weeks, I

have been hiding in the shadows and reading all of your posts with

great interest.

>

> Our ped. referred us to a plagio specialist at Children's. We went

today. Will start PT for the tort and will be trying repo for the

next two months. Based on the results we will either band or

continue repo.

>

> Anyway, I just wanted to say hello and I look forward to getting to

know each of you better.

>

> , & in Texas

[Guest guest]

Welcome to the group. Thank you for sharing your story. Yeah for your pediatrician for referring at such a young age! please keep us posted on .

Angie and Jenna(STAR grad 1/21/03)

Hello

I just wanted to introduce myself and say hello to everyone. Two weeks ago at his two month check up, our Pediatrician said that our son, , had torticollis and plagiocephaly. I immediately came home and did an internet search to learn all I could about the two diagnosis and stumbled upon this group. For the last two weeks, I have been hiding in the shadows and reading all of your posts with great interest.

Our ped. referred us to a plagio specialist at Children's. We went today. Will start PT for the tort and will be trying repo for the next two months. Based on the results we will either band or continue repo.

Anyway, I just wanted to say hello and I look forward to getting to know each of you better.

, & in TexasFor more plagio info

[Guest guest]

Welcome ! Good luck repoing! You've come to the right place for advice and support! You're son is at a good age to get a lot of benefit from repo.

/DOC/10-7-03 @10mos/PA Mahone <mahonefamily@...> wrote:

I just wanted to introduce myself and say hello to everyone. Two weeks ago at his two month check up, our Pediatrician said that our son, , had torticollis and plagiocephaly. I immediately came home and did an internet search to learn all I could about the two diagnosis and stumbled upon this group. For the last two weeks, I have been hiding in the shadows and reading all of your posts with great interest.

Our ped. referred us to a plagio specialist at Children's. We went today. Will start PT for the tort and will be trying repo for the next two months. Based on the results we will either band or continue repo.

Anyway, I just wanted to say hello and I look forward to getting to know each of you better.

, & in TexasFor more plagio info

[Guest guest]

Hi !

Welcome to our group! Definitely count yourself fortunate that your Dr. was even familiar with tort & plagio. Sadly, most of ours were not.

Luckily, you have caught this early enough to try repo. We tried with Trentyn, but his tort prevented us from being successful with it. Keep us updated on how is doing.

We are also in Texas and go to the Dallas CT. Where are you located?

Jen- TXTrentyn- 17 mo. DocBand 06/12/03 & 09/17/03

Hello

I just wanted to introduce myself and say hello to everyone. Two weeks ago at his two month check up, our Pediatrician said that our son, , had torticollis and plagiocephaly. I immediately came home and did an internet search to learn all I could about the two diagnosis and stumbled upon this group. For the last two weeks, I have been hiding in the shadows and reading all of your posts with great interest.

Our ped. referred us to a plagio specialist at Children's. We went today. Will start PT for the tort and will be trying repo for the next two months. Based on the results we will either band or continue repo.

Anyway, I just wanted to say hello and I look forward to getting to know each of you better.

, & in TexasFor more plagio info

[Guest guest]

Iris, that's devastating news. Your granddaughter, you, and your family

have my prayers.

I've missed you.

[ ] Hello

> Hello Everyone,

>

> I hope that you are all doing well. You have all been in thoughts. I

have been dealing with a very

> serious, heart-breaking issue. It appears as though my precious,

little granddaughter has been

> molested by her other grandmother's husband. We are in the middle of

play therapy and the

> investigation is moving forward.

>

> All of this tragedy has brought along a immense flare-up in pain and

exhaustion. I have been

> trying to conserve my energy and today is the first day that I have

been on the computer for a

> month. Once again, I will slowly catch up with you all. Hugs to you

all. Iris

[Guest guest]

i am sorry to hear of your family's suffering. i truly as a mother understand

how upsetting it can be. please know that my thoughts and prayers are with

you. kathy in il

[Guest guest]

Iris,

My thoughts and prayers are with you and your granddaughter. I hope the guy

gets put away.

Noreen

[Guest guest]

Hi Kat, Welcome to the group, sorry the reason why your here. You

have came to the right place for support and caring people. It

sometimes takes awhile for the meds to start to work, just don't give

up yet. Are you on the MTX pills or injections? Don't give up on

the social security it does take time.

I am 41, live in OKC, and I am on social security. I have RA, OP,

lupus, and other autoimmune disorders. I am on Humira weekly

injections, which don't seem to be working for me. I am on

Prednisone 5 mg daily(low dose)and a Zoloft now for my depression. I

take Darvocet and Tramadol for pain, and vitamins of course.

I will enjoy getting to know you, hugs Tawny

> Hello,

> I am not new to the support group but am new to posting. I have

been

> reading all the e-mails and thought that I would go ahead send out

an

> e-mail and say hello and tell a little about myself.

> My name is and I live in Greensboro,NC. I am 44 years old and

> was dx with OA in August of 2002 and RA in November 2002.I also

have

> diabetes, high blood pressure, chol.is a little high,I am

overweight

> and take about 12 to 14 different pills a day. I wasn't able to

see

> a Rheumy until Feb. of this year. Before that my regular doctor put

> me on low dose of Predisone,Vioxx and Vicodin for the pain. My

Rheumy

> started me on MTX four weeks ago and Folic Acid. I cannot tell any

> difference as of yet. Does it take a while before you might see any

> change? I go back to him May 18 and we will see what he says. I am

> having a real bad flare up now and hurt like crazy. I think the

good

> Lord that my general doctor is willing to prescribe me pain meds.

> I was turned down twice by Social Security and had to get a lawyer.

> The lawyer put in for a hearing with the judge in December and said

> it usually takes 8 to 10 months to get a date. All this mess is so

> hard to understand sometimes. Well, I will not keep any of you any

> longer with my woes. I do want to send out my thanks for all the

> posts I have read. They have been a big help and have giving

> encouragement. I pray all of you have a great day.

> By, the way I noticed that there is another in the group so I

> can be called Kat if that helps. My godson gave me that name when

he

> was about 1 1/2 yrs old. He couldn't say .

> God Bless To All,

> (Kat)

[Guest guest]

So glad you decided to post, Kat. I hope the increase in MTX helps you

and that you get to try Humira. Your physician sounds like a gem.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Hello

> Hello,

> I am not new to the support group but am new to posting. I have been

> reading all the e-mails and thought that I would go ahead send out an

> e-mail and say hello and tell a little about myself.

> My name is and I live in Greensboro,NC. I am 44 years old and

> was dx with OA in August of 2002 and RA in November 2002.I also have

> diabetes, high blood pressure, chol.is a little high,I am overweight

> and take about 12 to 14 different pills a day. I wasn't able to see

> a Rheumy until Feb. of this year. Before that my regular doctor put

> me on low dose of Predisone,Vioxx and Vicodin for the pain. My Rheumy

> started me on MTX four weeks ago and Folic Acid. I cannot tell any

> difference as of yet. Does it take a while before you might see any

> change? I go back to him May 18 and we will see what he says. I am

> having a real bad flare up now and hurt like crazy. I think the good

> Lord that my general doctor is willing to prescribe me pain meds.

> I was turned down twice by Social Security and had to get a lawyer.

> The lawyer put in for a hearing with the judge in December and said

> it usually takes 8 to 10 months to get a date. All this mess is so

> hard to understand sometimes. Well, I will not keep any of you any

> longer with my woes. I do want to send out my thanks for all the

> posts I have read. They have been a big help and have giving

> encouragement. I pray all of you have a great day.

> By, the way I noticed that there is another in the group so I

> can be called Kat if that helps. My godson gave me that name when he

> was about 1 1/2 yrs old. He couldn't say .

> God Bless To All,

> (Kat)

[Guest guest]

My Rheumy

> > started me on MTX four weeks ago and Folic Acid. I cannot tell

any

> > difference as of yet. Does it take a while before you might see

any

> > change? I go back to him May 18 and we will see what he says.

When Dr Carson started me on MTX and Folic Acid - he told me it

could take as long as 3 to 4 months to start getting any relief. I

gave it the time and it did start working. It was the 1st drug that

they gave me that I remember helping. I don't like the fact though

that it seems you have to continually increase the dosage to get

relief.

It may just be me though...and that I was flaring bad this winter

and they kept increasing my dosage. Hopefully, it will recede this

summer.

God bless,

Althea

[Guest guest]

I hate needles, always have and have always fainted before even getting a shot!

I now get Humira injections and they hurt, sometimes worse than other times but

they really hurt. I just have gotten used to the thought that it will be over

in a matter of minutes and it's worth a few minutes of pain to ease years of

pain. My husband gives them to me, I still can't do it. He's going out of town

in two weeks so my friend is going to give it to me. I'm trying to talk her

husband into taking Humira so we can't have him around when he sees me get mine.

I put a pillow over my head and grit my teeth but I don't scream and cry

anymore. I just kind of try to go " out of my body " for a short time, as crazy

as that sounds. I keep trying to think of something else but it's not easy to

do. I think that is something like survival instinct or whatever it's called.

The pain of that shot is worth it to me if there is any possibility of it

working. Last night I saw my little inspiration at Wal-Mart, a little girl in

my children's school (I think she's now going into 5th grade) that is diabetic.

She does 3-4 shots a day plus finger sticks all on her own and has for many

years. If that little baby doll can handle it, I can't complain. And, with my

aunt getting her leg amputated, I keep thinking I'm glad I have a leg to get it

in.

Becky

[ ] Hello

Hi all...

Am wondering, isn't there anything med-wise for RA available that

doesn't involve needles?!

** cheryl **

[Guest guest]

Hi Becky (and everyone)...

Well, I'm pretty sure my husband couldn't be giving me shots, for

one thing, his hands shake pretty badly. For another, I don't know

that either one of us would have the courage or the stomach for it.

Yes, it's great to see the little ones carrying on so bravely, but

then if they've always dealt with something like that, then it

doesn't seem 'abnormal' to them. They can take it more in stride

because it's what they've always known. Wish I could bottle that!

I also have GERD, so I am unable to take most of the pain meds via

pill form, but I am so not into getting shots all the time, so I

guess I will be stuck with increased disability and pain. About all

I can manage is Tylenol Arthritis.

Not sure about ANY of it! too many side effects, seems like.

** cheryl **

> I now get Humira injections and they hurt, sometimes worse than

other times but they really hurt. I just have gotten used to the

thought that it will be over in a matter of minutes and it's worth a

few minutes of pain to ease years of pain. My husband gives them to

me, I still can't do it. He's going out of town in two weeks so my

friend is going to give it to me. I'm trying to talk her husband

into taking Humira so we can't have him around when he sees me get

mine. I put a pillow over my head and grit my teeth but I don't

scream and cry anymore. I just kind of try to go " out of my body "

for a short time, as crazy as that sounds. I keep trying to think

of something else but it's not easy to do. I think that is

something like survival instinct or whatever it's called. The pain

of that shot is worth it to me if there is any possibility of it

working. Last night I saw my little inspiration at Wal-Mart, a

little girl in my children's school (I think she's now going into

5th grade) that is diabetic. She does 3-4 shots a day plus finger

sticks all on her own and has for many years. If that little baby

doll can handle it, I can't complain. And, with my aunt getting her

leg amputated, I keep thinking I'm glad I have a leg to get it in.

>

> Becky

[Guest guest]

> Hi Becky (and everyone)...

>

> Well, I'm pretty sure my husband couldn't be giving me shots, for

> one thing, his hands shake pretty badly. For another, I don't know

> that either one of us would have the courage or the stomach for it.

>

> Yes, it's great to see the little ones carrying on so bravely, but

> then if they've always dealt with something like that, then it

> doesn't seem 'abnormal' to them. They can take it more in stride

> because it's what they've always known. Wish I could bottle that!

>

> I also have GERD, so I am unable to take most of the pain meds via

> pill form, but I am so not into getting shots all the time, so I

> guess I will be stuck with increased disability and pain. About all

> I can manage is Tylenol Arthritis.

>

> Not sure about ANY of it! too many side effects, seems like.

>

> ** cheryl **

>

>

>> > I now get Humira injections and they hurt, sometimes worse than

> other times but they really hurt. I just have gotten used to the

> thought that it will be over in a matter of minutes and it's worth a

> few minutes of pain to ease years of pain. My husband gives them to

> me, I still can't do it. He's going out of town in two weeks so my

> friend is going to give it to me. I'm trying to talk her husband

> into taking Humira so we can't have him around when he sees me get

> mine. I put a pillow over my head and grit my teeth but I don't

> scream and cry anymore. I just kind of try to go " out of my body "

> for a short time, as crazy as that sounds. I keep trying to think

> of something else but it's not easy to do. I think that is

> something like survival instinct or whatever it's called. The pain

> of that shot is worth it to me if there is any possibility of it

> working. Last night I saw my little inspiration at Wal-Mart, a

> little girl in my children's school (I think she's now going into

> 5th grade) that is diabetic. She does 3-4 shots a day plus finger

> sticks all on her own and has for many years. If that little baby

> doll can handle it, I can't complain. And, with my aunt getting her

> leg amputated, I keep thinking I'm glad I have a leg to get it in.

>> >

>> > Becky

>

>

>

>

>

>

[Guest guest]

Hi e.. Welcome to the group.. would love to email you.. you can contact me at leahs_male@.... I have 4 boys.. my last one affected with BPES.. He is 5 now and had the brow suspension op at about 2.. which was also an awesome success.. Until then i had never heard of such a thing.. But it is really neat to be a part of this group where we all have something in common and can find awesome support through some of the harder times, especially as our children face the surgeries etc. I look forward to hearing from you soon..

Leah

blepharophimosis Hello

Hello,I come from a family of bpes from scotland and am very grateful to have found this website. After 32 years, three operations and two children (one with bpes) I have finally found out the name of my syndrome, what it is and how it is passed down. Although I knew the condition is unusual I didnt reaslise how unusual!My daughter Mia at the age of four has had her first surgery (brow suspension) which has been a great success. With regards to the infertility aspect we do not seem to be affected as my Father who has BPES has three daughters two of which have BPES and who both have children.I would be happy to hear from anyone who wants to chat.e

[Guest guest]

e,

Welcome to the group. I too am 32 and come from a family of BPES. I live

in Ohio. My father had it as does my grandfather. I have it and have passed

it on to 2 of my sons. My oldest son, who will be 11, is finished with his

surgeries, unless the surgereon feels he needs to have the bridge of his

nose raised. His results were fantastic. My youngest son, who will be 6 on

the 22nd, has had 3 surgeries so far and is going in this Friday for his

brow suspension. The surgeon has already told me that he will need at least

one more surgery when he is a teenager. He too has a very flat bridge, but

nothing has been said about that yet. It's so flat his glasses won't even

stay up.

Again, welcome to the group.

[Guest guest]

>three daughters two of which have BPES and who both

have children.

Hi e,

that´s interesting. At what age did you two daughters have their children?

Anja

> Hello,

> I come from a family of bpes from scotland and am very grateful to

> have found this website. After 32 years, three operations and two

> children (one with bpes) I have finally found out the name of my

> syndrome, what it is and how it is passed down. Although I knew the

> condition is unusual I didnt reaslise how unusual!

>

> My daughter Mia at the age of four has had her first surgery (brow

> suspension) which has been a great success. With regards to the

> infertility aspect we do not seem to be affected as my Father who

> has BPES has three daughters two of which have BPES and who both

> have children.

>

> I would be happy to hear from anyone who wants to chat.

>

> e

>

>

>

>

>

>

[Guest guest]

, I find that metal rimmed glasses don't fit well for me. The plastic rimmed type sit far more comfortably on my nose. I know that they are a lot less trendy. But funnily enough, in 80's they were all the rage!

Shireen

-----Original Message-----From: Feichtner [mailto:mfeichtner@...]Sent: 12 July 2004 13:03blepharophimosis Subject: Re: blepharophimosis Helloe,Welcome to the group. I too am 32 and come from a family of BPES. I livein Ohio. My father had it as does my grandfather. I have it and have passedit on to 2 of my sons. My oldest son, who will be 11, is finished with hissurgeries, unless the surgereon feels he needs to have the bridge of hisnose raised. His results were fantastic. My youngest son, who will be 6 onthe 22nd, has had 3 surgeries so far and is going in this Friday for hisbrow suspension. The surgeon has already told me that he will need at leastone more surgery when he is a teenager. He too has a very flat bridge, butnothing has been said about that yet. It's so flat his glasses won't evenstay up.Again, welcome to the group.

[Guest guest]

Hi Anja,

It is my father who has the two daughters with BPES (my sister and myself). I had my children at the ages of 27 and 29. had her children at the age of 23 and 28.

I have a four year old daughter (Mia) with bpes and denise has Sam (6 months old) with bpes.

Thanks

e

Re: blepharophimosis Hello

>three daughters two of which have BPES and who bothhave children.Hi e,that´s interesting. At what age did you two daughters have their children?Anja> Hello,> I come from a family of bpes from scotland and am very grateful to> have found this website. After 32 years, three operations and two> children (one with bpes) I have finally found out the name of my> syndrome, what it is and how it is passed down. Although I knew the> condition is unusual I didnt reaslise how unusual!>> My daughter Mia at the age of four has had her first surgery (brow> suspension) which has been a great success. With regards to the> infertility aspect we do not seem to be affected as my Father who> has BPES has three daughters two of which have BPES and who both> have children.>> I would be happy to hear from anyone who wants to chat.>> e>>>>>>