newbie

[Guest guest]

Hi , You sure belong to a lot of groups. How do you find the time to

read them all? You say you are an R/A newbie. Pleased to meet you. I am

Dolores R/A & S/D from NYC, diagnosed a year ago, but spent years in agony w/o

clue. Am into my 7th month of Minocin and it has made my world so much easier.

Hope you have a good success story to tell. Dolores

jeniffer anston <finart_2020@...> wrote: Hi Friends!

Sometimes u just cant predict what ur gonna find in ur mail! Just

opened my mail n guess what? voip !

Check it out

Have fun Guys, i think am gonna love it here, i just hope somebody

sends me a mail soon!

Join the largest Artificial Life Group on the Internet today

voipip

__________________________________________________

[Guest guest]

> PS. I would also like travel tips for the flight, travel within

> india.

Ideas for flying

http://www.danasview.net/plane.htm

Dana

[Guest guest]

Dottie...Kathy is right on it. I don't have heel issues but did 17

years ago so I know the pain. My doctor at the time could not figure

it out and I did not see a Rheumy and get a diagnosis until 4 years

ago. Last year I began having more difficulty getting up stairs but

hid it from my Rheumy because I'm a bone head. Finally, when I could

barely walk this past spring, I could no longer hide it from anyone

because it hit with a vengence. I got on Enbrel and had great relief

but had to stop due to some side effects. It's a great drug for most

who try it and I still recommend any of the biologics. They can

greatly improve your quality of life. As far as the moto carts and

the cane...I can strongly recommend them. I'm a young 45 and was

just not willing to use a cane or moto cart. Again....the bone

headedness. But I finally realized that it was just nuts to creep

around the supermarket clinging to the cart for support and then

barely making it home before collapsing from exhaustion. Now I park

in the handicap place (got my paperwork from the town clerk, gave it

to my Dr. to fill out his part, he mailed it back to me, took it

back to the town clerk and was given my hanging tag THAT

day...easier than I thought it would be), use my cane to get to the

cart and hop in. I get what I need and smile at all I pass (except

for the one's I'm appologizing to for running over

them.........kidding) and I get home relaxed and feeling that I've

accomplished something. Last week I ran into someone I had not seen

since my pre-gimpy days as I was riding up to my car. Her 12 year

old daughter was more than happy to ride the moto cart back to the

store for me so I left feeling that I had made someone's day. One

thing about the cane...I was not using it properly. I found this out

when I had PT in my home recently. You have to stand up straight as

you can and still attempt to walk in a forward motion, picking up

your feet slightly (I was dragging mine and destroying shoes), and

bending your knees slightly. Keeping things stiff gives you problems

in other areas of your body. The joints need to MOVE. The cane is a

support but not a crutch. Leaning on it too much is not as helpful

as you think. I have heard that if you purchase your cane at a place

that sells walkers, canes, and other medical supplies exclusively,

someone there will be more likely to give you a bit of coaching

before you leave with your product than if you pick it up at the RX

in wal-mart....not that wal-mart is a bad place...I love wal-mart.

But you get my drift. All that said...welcome to the group. You'll

find lots of answers and plenty of support here. -Betz

[Guest guest]

thank you Betz! Great idea of going to a store that sells canes. I did buy a

collapsible one at CVS. My husband has a Harley and it will fit in the saddle

bag! LOL I'm also tired of walking around the office holding to the wall but

like you, too bone headed to admit I need help. Are you a Taurus also??

I'll check into getting the " hanging tag " also.

thanks again

Dotti

Betsy Jack <itsbetsy@...> wrote:

Dottie...Kathy is right on it. I don't have heel issues but did 17

years ago so I know the pain. My doctor at the time could not figure

it out and I did not see a Rheumy and get a diagnosis until 4 years

ago. Last year I began having more difficulty getting up stairs but

hid it from my Rheumy because I'm a bone head. Finally, when I could

barely walk this past spring, I could no longer hide it from anyone

because it hit with a vengence. I got on Enbrel and had great relief

but had to stop due to some side effects. It's a great drug for most

who try it and I still recommend any of the biologics. They can

greatly improve your quality of life. As far as the moto carts and

the cane...I can strongly recommend them. I'm a young 45 and was

just not willing to use a cane or moto cart. Again....the bone

headedness. But I finally realized that it was just nuts to creep

around the supermarket clinging to the cart for support and then

barely making it home before collapsing from exhaustion. Now I park

in the handicap place (got my paperwork from the town clerk, gave it

to my Dr. to fill out his part, he mailed it back to me, took it

back to the town clerk and was given my hanging tag THAT

day...easier than I thought it would be), use my cane to get to the

cart and hop in. I get what I need and smile at all I pass (except

for the one's I'm appologizing to for running over

them.........kidding) and I get home relaxed and feeling that I've

accomplished something. Last week I ran into someone I had not seen

since my pre-gimpy days as I was riding up to my car. Her 12 year

old daughter was more than happy to ride the moto cart back to the

store for me so I left feeling that I had made someone's day. One

thing about the cane...I was not using it properly. I found this out

when I had PT in my home recently. You have to stand up straight as

you can and still attempt to walk in a forward motion, picking up

your feet slightly (I was dragging mine and destroying shoes), and

bending your knees slightly. Keeping things stiff gives you problems

in other areas of your body. The joints need to MOVE. The cane is a

support but not a crutch. Leaning on it too much is not as helpful

as you think. I have heard that if you purchase your cane at a place

that sells walkers, canes, and other medical supplies exclusively,

someone there will be more likely to give you a bit of coaching

before you leave with your product than if you pick it up at the RX

in wal-mart....not that wal-mart is a bad place...I love wal-mart.

But you get my drift. All that said...welcome to the group. You'll

find lots of answers and plenty of support here. -Betz

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Are you a Taurus also??

Betz wrote: No...wacky Gemini

[Guest guest]

Oh I should have known!!! My husband is Gemini! LOL

Betsy Jack <itsbetsy@...> wrote:

Are you a Taurus also??

Betz wrote: No...wacky Gemini

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Betz - no wonder I like you so much - me too - the 15th!

Two heads are better than one, until you try to get a sweater on (LOL)...

Glad to see you are back, sorry to hear about the financial

shenanigans. Your resilience is inspiring Betz. Love ya lady! Best of

luck, I know you will get things sorted out... -

No...wacky Gemini

>

[Guest guest]

Thanks for the encouragement Dave....I needed it this week. I know

things will work out too because I've made it through dire straights

this year already but it sure stinks just before the dawn. -Betz

[Guest guest]

betz .

I don't know if this is true in your state . but in massachusetts it used

to be that if you applied for medicaid that the bill could be paid up to 3

months retroactive. I dont know if you can still do that but it used to be true

in massachusetts. . you need to ask for 'free care " if you have to go to the

hospital at the present ime. .Then even if you dont have in surance you

should be able to get free care . But if you just say I have no insurance

they

will bill you personally . Check into the retroactive thing and go to the

new york medicaid wesbite and ask about it . cathy from ma

[Guest guest]

No...wacky Gemini

> >

>

Raises hand...

I am guilty (and innocent) of being a Gemini too! (June 15th)

How can someone be guilty and innocent at the same time you

ask? Only Gemini's know. LOL

Sandi

[Guest guest]

Hi and welcome to the site, Al. I'm in a bit of a hurry, but I wanted

to let you know that this is an extremely cool group, that will be

happy to help you and to listen to (read) you. I have never run

across a more helpful and caring bunch of people. One good thing

about the pain, at least we know we're alive! LOL Best Wishes ...

Brent

[Guest guest]

In a message dated 10/23/2006 2:08:46 P.M. Eastern Standard Time,

itsbetsy@... writes:

if you purchase your cane at a place

that sells walkers, canes, and other medical supplies exclusively,

someone there will be more likely to give you a bit of coaching

before you leave with your product than if you pick it up at the RX

in wal-mart....in wal-mart....<WBR>not that wal-mart is a bad place...I

But you get my drift. All that said...welcome to the group. You'll

find lots of answers and plenty of support here. -Betz

Personal Experience,

I take all my Rxs for medical equipment to a medical equipment store. They

automatically file with my insurance company, who has been more than willing

to split the cost with me. And as Betz said, they there to " train " you on

how to properly use the equipment.

BTW, if any of you are told to get pressure stockings, get an RX and take

they to the same type of place.

Sandy swOhio

[Guest guest]

I have not recieved posts for a few days....something about

being " bounced " ...lol. My eyes have been a mess anyway and tomorrow I'm

calling my opthalmologist and begging him to see me and bill me after

Medicaid is reinstated. I finally spoke to someone in Social Services

and they ARE sending someone to my house.....no later than Weds or

Thurs of this week. And my birthday is the 14th!! Born on Flag Day and

related to Betsy Ross (who according to the History Channel did not sew

the first flag after all. My sewing abilities are sad so it does not

surprise me at all). Yes... I have a full understanding of innocent

guilt. And I often feel more like I do now than I did awhile ago. Brain

fog that one Baby! -Betz

[Guest guest]

me too jason !!!. my last name is bollen but it had been changed [sp] after

many generations . actually its my married name . But my husbands family

traced it back on his side . . i imagine that they changed the spelling because

it

wasn't prestigious to be related to poor old Anne. small world cathy from

ma

[Guest guest]

Betz,

You are priceless. I'm supposedly related to Anne Boleyn. Hopefully she and I

have nothing in common either. My birthday was today (29th). Good luck with

social services.

hugs,

Jayson

[ ] Re: newbie

I have not recieved posts for a few days....something about

being " bounced " ...lol. My eyes have been a mess anyway and tomorrow I'm

calling my opthalmologist and begging him to see me and bill me after

Medicaid is reinstated. I finally spoke to someone in Social Services

and they ARE sending someone to my house.....no later than Weds or

Thurs of this week. And my birthday is the 14th!! Born on Flag Day and

related to Betsy Ross (who according to the History Channel did not sew

the first flag after all. My sewing abilities are sad so it does not

surprise me at all). Yes... I have a full understanding of innocent

guilt. And I often feel more like I do now than I did awhile ago. Brain

fog that one Baby! -Betz

[Guest guest]

In a message dated 23/10/2006 17:05:28 GMT Standard Time,

dottijones2005@... writes:

I have just been diagnosed with PA. I'm 56 yrs old and this is the

first time I have had anything like this. The most problem and pain is

in my right foot (plantar facia).

Hi Dotti,

Welcome to the group. I'm glad you found us but sorry that you have been hit

with this disease. It is devastating at first and difficult to get your head

around but with the right meds and being in contact with people who know where

you are coming from, you can get your spirits back up again. For example, you

now have 2900 more friends than you had a month ago. Is that something or

what? lol I see Kathy has already given you good advice and probably several

others (although I have yet to reach those posts) so hopefully you will already

be

feeling slightly better about things.

Keep in touch (That's good coming from me! lol)

[Guest guest]

Hi , Nice to meet you and my other 2900 new friends! LOL Yes,

this site has been extremely helpful to me. It's comforting to know I'm

not alone and what I'm feeling is real not in my head.

Dotti

[Guest guest]

Hi Jayson,

I hope you had a very happy birthday. I'm sorry I missed it but you won't be too

surprised about that. lol

I just read that you have found someone Jayson. That is absolutely brilliant to

hear.

I hope everything works out well for you.

Take care,

[Guest guest]

Welcome !!!

You are not a bad mommy!!! You will find that there are ALOT of us going thru or having been thru what you are!

This is a great place for support and answers from wonderful parents who've been there!

The DOCband is a helmet. It actively redirects the growth of the skull bones as the skull grows larger.

There are other brands out there too.

1st you need to get a diagnosis - go to the ped and see what they have to say - If the ped isn't helpful. (some are, some aren't) - get a referral to a cranio-facial dr or neuro to get a diagnosis and prescription for the band. From there you go to the helmet provider (DOC, Starband, Hanger, etc.)

But 1st is to see the dr - the window for correction is over when the skull bones are fused so the earlier the better.

HTH!!!

JEN

Mommy to 4...and 1 more!!!!

Luli - Tort/Plagio - Hanger Band - CA

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

Bounced means your emails are not going to your email box, maybe you have not

registered a new email name?

Love And Peace

Always, Shaun And Barb

[Guest guest]

Hi ,

welcome to the group. It is great that you found out about plagio

while your son is so young. you can try repositioning (repo) and

investigate helmets if needed. look in the files section for tips on

repo-ing your little one. he's young enough that you could still have

a lot of success in a short time (his head should still be growing

quickly). my daughter loved the bouncy seat and I had no idea it was

bad for her.

have you heard of the bumbo seat? you can find it at babies-r-us or

target. it supports your baby and allows him to sit before he can do

it on his own. if his not ready for it yet, he should be soon. that,

tummy time, exersaucer etc are good ways to keep him off his head

(exersaucer might be better around 4 mo old).

DOCband, STARband and Hanger bands are the most common types of

" helmets " . they more or less look like helmets, but are open on top

and they have a side opening that allows you to pry them open when you

put them on/off the baby's head. there are other brands too. basically

they fit close to the head where it is already more prominent, and

leave a room where the head needs to grow so that it naturally fill in

the parts where there is space. my daughter had brachycephaly (flat in

back) and i didn't realize that her head had actually gotten much

wider than normal. after her starband her head looks great.

I'm sure you'll find lots of good info here and feel free to ask any

question.

-christine

mom to sydney/ 10 mo/ starband grad 10-06

>

> Hi!

> I was so excited to find this site! I have a 3 month old son and I

> swear, every day the back of his head looks flatter! When he was born

> he would only sleep if he was in his bouncy chair with the vibrator on

> and now his head is sloped at the same angle as the bouncy chair and

> I'm totally freaking out. I feel like a failure of a mom and it's so

> embarassing to take him out to church or wherever because it's pretty

> obvious that his head is flat. I don't know what to do! If I take him

> to the doctor I worry that I'll get in trouble for neglect or

> something because I don't hold him alllllll night long, too. What is

> this DOCband? It seems to work well from the pictures (thank you to

> all who posted them, it really opened my eyes!), is it different from

> a helmet? I have no idea what to do. Please help!

>

>

>

[Guest guest]

Oh, , you are not a failure as a mom! You are certainly not going to

get in trouble if you take your son to the doctor. did a good job

explaining the what a band/helmet is and how it works. Let us know where

you are located and perhaps someone can direct you to a nearby banding

company. In the meantime, make an appointment with your son's doctor to get

the ball rolling. You made need to get a referral to a specialist - plastic

surgeon, cranial facial specialist, neurosurgeon - in order to get a

prescription for a band.

Molly

California

Nicolas, 13 months, tort & plagio, STARband 4/25/06-9/12/06, Graduate!

, 3.5

, 7

newbie

Hi!

I was so excited to find this site! I have a 3 month old son and I

swear, every day the back of his head looks flatter! When he was born

he would only sleep if he was in his bouncy chair with the vibrator on

and now his head is sloped at the same angle as the bouncy chair and

I'm totally freaking out. I feel like a failure of a mom and it's so

embarassing to take him out to church or wherever because it's pretty

obvious that his head is flat. I don't know what to do! If I take him

to the doctor I worry that I'll get in trouble for neglect or

something because I don't hold him alllllll night long, too. What is

this DOCband? It seems to work well from the pictures (thank you to

all who posted them, it really opened my eyes!), is it different from

a helmet? I have no idea what to do. Please help!

For more plagio info

[Guest guest]

Hello!

I welcome to this group! It is loaded with all types of wonderful info to help you get started with your son. YOUR NOT a failure!!! Your already on your way by researching info about your son's "misshape" head. That's GREAT!! I just joined the group too. We noticed Bradley's mishaped head early about the start of his 2nd month. I thought it was just from him being a premmie because the nurse said premmie babies have a swishy heads, but I have tried repostioning since then and he is 4m now. So I have an appt Monday with his Ped. And Iam going to show him al1 the info I have found.I was so exicted too when I found this group and a great site also is http://www.cranialtech.com/medicalinfo/identifyplagio.html it help me identified the problem Well, I hope you have a great day!!!

Ingrid/Bradley 4m( no band yet)Moncks Corner,SC

>> Hi! > I was so excited to find this site! I have a 3 month old son and I > swear, every day the back of his head looks flatter! When he was born > he would only sleep if he was in his bouncy chair with the vibrator on > and now his head is sloped at the same angle as the bouncy chair and > I'm totally freaking out. I feel like a failure of a mom and it's so > embarassing to take him out to church or wherever because it's pretty > obvious that his head is flat. I don't know what to do! If I take him > to the doctor I worry that I'll get in trouble for neglect or > something because I don't hold him alllllll night long, too. What is > this DOCband? It seems to work well from the pictures (thank you to > all who posted them, it really opened my eyes!), is it different from > a helmet? I have no idea what to do. Please help!> > >

[Guest guest]

Hi Welcome to the group!!

Here is a link, don't know if you have it yet but its filled with lots of infohttp://www.cranialtech.com/medicalinfo/identifyplagio.html I have tried repostioning since he was 2m but, it is not helping ,its getting worse. So I need to start looking at other options. Let me know if I can help you with anything. We are all here to help. Best of Luck!

Ingrid/Bradley 4m/ Moncks Corner,SC>> Hi, I just wanted to introduce myself and tell you about my son. Were > from australia. My son Blake is a plagio baby. He has flattening on > the side on head (right side). Right left side of the back of his > head and bossing on the front right side of his forehead.> > I have taken him to 2 family drs and a ped here in Australia. (I'm > orginally from the US. So a bit confused on how things work here) > They have all told me not to worry about his head shape it will > straigthen out on it's own. I have made a appointment for a cranio > specailist for the 6th of march. So hopefully I will get the > ansewers I want from there. All the drs I have spoken to told me to > let him sleep any way he wants and not do ANYTHING. I have kept him > off that side of his head. It hasn't gotten worse. I actually think > it looks a little better. > > I find that drs here don't want to use a helment, and I have a friend > in New Zealand, her sons head was quite bad and they told her the > same. His turned out great without any treatment. Just confused on > why in the US everyone seems to get a helment to straighten out even > of the most minor cases and here they tell you not to worry. That's > why I'm worried. I'm confused on whos right and wrong. Just want to > do the right thing.> > Sorry it's so long, just hoping maybe someone can help me with what > to do?> I have looked at some of your pictures in the (photos) find some look > like Blakes and some don't look quite so bad. No one tends to look > bad to me, does that make sense? like you don't pay too much > attention to someone elses, but you worry about your own childs head > shape? Being a mom is hard. lol to say the least.> > Ok, thanks for reading and any help.> mommy to nathan Tyler 8/2/00 and Blake 9/20/02>

[Guest guest]

hi--i had a similar situation--we took our dtr to 2 different

pediatricians (in New York) and both told us that the plagio was

minor, that it still could resolve itself, and that they did not

think the helmet was necessary. i still wasn't sure, so i took her

to a plastic surgeon who was very pro-helmet. he felt that her

condition was a 3 out of 10 in terms of severity, but said he saw no

down-side to getting the helmet. so now we have had the helmet for a

week and i am still wondering all the time if we are doing the right

thing. we have had to go back 3 times to have it fitted, and it is

still shifting more than it should. but if it weren't shifting, i

think i would be happier with our decision. i didn't want to regret

not doing something to help. the whole process does take a little

getting used to, but it will be worth it if it helps her. the

specialist definitely helped us with our decision--i hope that will

help you too. they can give you a good idea of how much the helmet

can help your child (depending on severity and age), which was a big

factor for us. he thought it could go from a 3 to a 1 so we thought

it was worth it. good luck!!!

>

> Hi, I just wanted to introduce myself and tell you about my son.

Were

> from australia. My son Blake is a plagio baby. He has flattening

on

> the side on head (right side). Right left side of the back of his

> head and bossing on the front right side of his forehead.

>

> I have taken him to 2 family drs and a ped here in Australia. (I'm

> orginally from the US. So a bit confused on how things work here)

> They have all told me not to worry about his head shape it will

> straigthen out on it's own. I have made a appointment for a cranio

> specailist for the 6th of march. So hopefully I will get the

> ansewers I want from there. All the drs I have spoken to told me

to

> let him sleep any way he wants and not do ANYTHING. I have kept

him

> off that side of his head. It hasn't gotten worse. I actually

think

> it looks a little better.

>

> I find that drs here don't want to use a helment, and I have a

friend

> in New Zealand, her sons head was quite bad and they told her the

> same. His turned out great without any treatment. Just confused

on

> why in the US everyone seems to get a helment to straighten out

even

> of the most minor cases and here they tell you not to worry.

That's

> why I'm worried. I'm confused on whos right and wrong. Just want

to

> do the right thing.

>

> Sorry it's so long, just hoping maybe someone can help me with

what

> to do?

> I have looked at some of your pictures in the (photos) find some

look

> like Blakes and some don't look quite so bad. No one tends to look

> bad to me, does that make sense? like you don't pay too much

> attention to someone elses, but you worry about your own childs

head

> shape? Being a mom is hard. lol to say the least.

>

> Ok, thanks for reading and any help.

> mommy to nathan Tyler 8/2/00 and Blake 9/20/02

>