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  • 3 weeks later...
Guest guest

Hi and welcome to the group I am sure you will

find this group one of the most warm and caring....

questions are usually answered post haste by

the moderators and the group usually has answers

also...they let me stick around and I dont even have

RA

I have scleroderma and liked it here so much I stayed

and they let me....welcome again...Kathi in OK

--- nightangel_507 <nightangel_507@...> wrote:

> Hi....I just joined and I wanted to introduce

> myself. My name is

> and I have RA. I am looking forward to meeting

> everyone

> here.....

>

>

>

__________________________________________________

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Guest guest

Hi , and welcome to the group. You'll find a lot of great RA info from

our moderators, and a. You'll also find warm and caring friends.

Hugs,

Carol

[ ] New to the group

Hi....I just joined and I wanted to introduce myself. My name is

and I have RA. I am looking forward to meeting everyone

here.....

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Hi ...I'm Tess. I'm glad to meet you. This is a warm & caring

group of lovely folks. I'm sorry you have RA, but glad you found us.

With Hope...

Tess in NW Oregon

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Guest guest

Hi ,

Welcome to the group, I'm fairly new here myself but my health issues

are not. I have Systemic Lupus Erathematosis, (which is currently in

remission) I also have Raynoids (Which is not in remission). I am

sure you will like it here, It seems like a really wonderful group.

Huggs

Lena

> Hi....I just joined and I wanted to introduce myself. My name is

> and I have RA. I am looking forward to meeting everyone

> here.....

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> Hi....I just joined and I wanted to introduce myself. My name is

> and I have RA. I am looking forward to meeting everyone

> here.....

Welcome to the group , I am a 52 yr. old gramma of 6, just

recently moved from Oregon to Washington, I have had RA for 15 years

and luckily I have not had a lot of damage to my joints although that

doesn't seem to slow down the pain and swelling. I have tried all

the new meds (Remicade, Enbrel and Kineret) besides the ones that

have been around for a while. Nothing has worked but methotrexate, I

am now on 27mg injectable, it is backing off some so hoping they will

find something new.

You will find a lot of information from this group, also some

touching stories and a lot of laughs. Hope you enjoy the group as

much as I have.

in WA

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Hi :

Welcome! I am 48 years old, have two teenagers, and a

husband who thinks he's one too! I have had Raynaud's

for many years, and I have had RA for 3 years and am

currently taking Methotrexate, Arava and Bextra in

addition to meds for asthma and allergies.

Are you on any medications? How long have you been

diagnosed? Hope to be hearing more about you - the

knowledge shared amoung this group is very helpful.

Kathe in CA

__________________________________________________

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Hi ,

Welcome to our group. You will find a bunch of great, compassionate

people here who are both knowlegdable and supportive.

Hope you are having a great Sunday.

Al in IL

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Guest guest

Hi , welcome to the group..sorry for the delay in welcoming you...been

away awhile...I'm new to this group; but sure have found a lot of great

information, and some neat people to visit with...hope you are having a pain

free day....marge

[ ] New to the group

> Hi....I just joined and I wanted to introduce myself. My name is

> and I have RA. I am looking forward to meeting everyone

> here.....

>

>

>

>

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Guest guest

Hi , by your signon name of " nightangel " I assume your one of those

sleepless RA folks...I'll be looking for you on my sleepless in Michigan

nights. Look forward to sharing and visiting through the posts. I'm pretty

new to this group too; but have found a lot of good info and fun stuff too.

Hope you are resting well tonight....let me know if I assumed wrongly about

your name...my fingers are pretty swollen right now, so I will be signing

off and find some other things to do as I roam the night hours...maybe I'll

sleep tomorrow night....there is always the hope....best wishes for a pain

free day...marge

[ ] New to the group

> Hi....I just joined and I wanted to introduce myself. My name is

> and I have RA. I am looking forward to meeting everyone

> here.....

>

>

>

>

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  • 5 months later...

Dear Mich: Welcome to our group that we think of as family. Sorry that it took

the pain and the RA to find us but half the relief you will get will not be from

just the medicines or the Dr. but from this wonderful group that is always here

to walk you through your bad times and laugh with you in your good times.

(beautiful run on sentence - don't you think?) I, too have the severe

anemia(Pernicious) but have yet to find a good dr or Rheumy to take care of me

and there are days, I can barely walk. I am 62 years old and was diagnosed with

Fibromyalgia last July(but had probably been there at least 14 years)and am only

taking Tylenol for pain(wish I could get something else). My blood work in

August showed my sed rate at 51 and my internal medicine Dr did another one in

the past week or so that showed the sed rate to be 34(or was it 39, this is

where the Fibro Fog takes over sometimes)and my doctor pronounced me normal and

in effect dismissed me. I manage to work full time as one of the best things

for me to keep going is to deny to the world that there is that much wrong with

me. The world can be hard on you at times if you don't fit in their mold. But,

in this " family " , there is no mold - just love, compassion, and " being there "

with a shoulder to cry on or a hand to help you up when you are down. In other

words, they are here to to share everything, good or bad. And don't forget our

great moderators, they work tirelessly to find info for us when there seems none

to be found. Hope to see more of you in the future. JAN in CA +/:=)

C <michcd@...> wrote:Hi!

My name is Mich, and I wanted to introduce myself. I was diagnosed with RA

last Aug and put on methotrexate and prednizone. I started at 15 mg of P,

and am now down to 2.5.I am taking 17.5 mg of M, with no side effects except

for groginess, which I kind of like. When I first had a blood workup, I had

malnutrition, (I had severe weight loss), a sed rate of 60, and my rheumy

said he was surprised I could walk.

I take lots of B's, iron, regular vitamins, glu/chon and I have found

boswellin to help, also ashwaghanda, both indian herbs. I'm a SAHM, and live

in Minnesota.

I've found lots of good info, and it sounds like tthere is lots of love to

go around.

--

Mich C <michcd@...>

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Welcome to the group, Mich! Hoping to learn more about you.

[ ] new to the group

> Hi!

> My name is Mich, and I wanted to introduce myself. I was diagnosed

with RA

> last Aug and put on methotrexate and prednizone. I started at 15 mg of

P,

> and am now down to 2.5.I am taking 17.5 mg of M, with no side effects

except

> for groginess, which I kind of like. When I first had a blood workup,

I had

> malnutrition, (I had severe weight loss), a sed rate of 60, and my

rheumy

> said he was surprised I could walk.

> I take lots of B's, iron, regular vitamins, glu/chon and I have

found

> boswellin to help, also ashwaghanda, both indian herbs. I'm a SAHM,

and live

> in Minnesota.

> I've found lots of good info, and it sounds like tthere is lots of

love to

> go around.

> --

> Mich C <michcd@...>

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Welcome Mich. I¹m a from NJ and have had RA for 20+ years. I¹m

currently on

Enbrel & Mtx. I¹m glad to hear that the MTX is helping you and you have no

side

effects. You¹ve come to the right place to find support and enough love

for

everyone!

a

> Hi!

> My name is Mich, and I wanted to introduce myself. I was diagnosed with RA

> last Aug and put on methotrexate and prednizone. I started at 15 mg of P,

> and am now down to 2.5.I am taking 17.5 mg of M, with no side effects except

> for groginess, which I kind of like. When I first had a blood workup, I had

> malnutrition, (I had severe weight loss), a sed rate of 60, and my rheumy

> said he was surprised I could walk.

> I take lots of B's, iron, regular vitamins, glu/chon and I have found

> boswellin to help, also ashwaghanda, both indian herbs. I'm a SAHM, and live

> in Minnesota.

> I've found lots of good info, and it sounds like tthere is lots of love to

> go around.

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  • 1 month later...

,

Hi and welcome to the group! It sure is nice to hear that your Doctor is going for the band at this point, some would still argue that with time, it will round out (imo, some do, some don't depending on severity and circumstances)- still a great age to see good correction for Nick. Good luck with the casting process, try to bring anything of comfort for Nick (lollipop, paci, musical toy, bottle, etc.), they may not work, but you never know! It's over soon and then Nick will be onto rounder shapes ;) Good luck and keep us posted on the big day!

' Mom

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Hi ~

I am also new to the group, but I wanted to say HI to you because I am from the Chicago area. (born & raised there but left to get married) I used to live in Naperville when I worked in Lisle at AT & T/NCR.

I was so thrilled to see someone from my "neck of the woods" I just had to say "hi"!

Mimi ~ transplanted to West Virginia and mom to 5 children and wife to Jon

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Hi & welcome to our group!

You & Nick will be in great hands at the Oakbrook CT. I drove my

daughter 4 hrs one way bi weekly to that clinic and her results were

very good!

Do you have a casting appt schedule yet for the DOCband? Have you

checked into insurance coverage? Hopefully it won't be a problem.

Sorry repositioning did not work for Nick, it can be very difficult,

I know!

welcome again, we look forward to hearing more from you & hearing of

Nick's rounding head soon!!!

Debbie Abby's mom DOCGrad

MI

> Hi! I'm and my husband, son and I live in the South Subs of

> Chicago. We just started the process for getting Nick's DOC Band

> yesterday. We will be going to Cranial Technologies in Oak Brook,

IL

> hopefully.

>

> Nick's Dr. noticed that his head was lopsided at his 4 month

> appointment. At the 6 month appointment she thought it looked

worse.

> Repositional therapy wasn't helping. Now at his 9 month appointment

> she wants to go ahead with a band. Even though it was brought to my

> attention 5 months ago it is just now that I'm obtaining the

> terminology and information to begin researching it. I've learned

so

> much in the last few days.

>

> I'd love to get to know all of you and your kids!

>

>

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Welcome to the group! This is a great group! My Jenna started her STARband at 9 months. She wore it for 3 months and had 80% correction. We are thrilled. Her plagio was present at birth.

I am glad your doctor would give you the referral! Let us know when he gets his appointment!

Everyone here is so supportive and helpful. Whenever I had a question someone always replied. Good luck!

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

New to the group

Hi! I'm and my husband, son and I live in the South Subs of Chicago. We just started the process for getting Nick's DOC Band yesterday. We will be going to Cranial Technologies in Oak Brook, IL hopefully.Nick's Dr. noticed that his head was lopsided at his 4 month appointment. At the 6 month appointment she thought it looked worse. Repositional therapy wasn't helping. Now at his 9 month appointment she wants to go ahead with a band. Even though it was brought to my attention 5 months ago it is just now that I'm obtaining the terminology and information to begin researching it. I've learned so much in the last few days.I'd love to get to know all of you and your kids!For more plagio info

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-

Welcome to the group!

We've heard great things about the Oak Brook office.

We'd love to see pictures! Let us know when the casting is! Good

luck with that and insurance!

Dane's mom DOC Grad

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Hi , and welcome to the group!

We have had quite a few members here who have used the same CT clinic

as you, and all have been very happy with their results! Wishing the

same outcome for you and Nick!!!

Niki

Kaylie & Danny (STAR grads)

Phila.,PA

> Hi! I'm and my husband, son and I live in the South Subs of

> Chicago. We just started the process for getting Nick's DOC Band

> yesterday. We will be going to Cranial Technologies in Oak Brook,

IL

> hopefully.

>

> Nick's Dr. noticed that his head was lopsided at his 4 month

> appointment. At the 6 month appointment she thought it looked

worse.

> Repositional therapy wasn't helping. Now at his 9 month appointment

> she wants to go ahead with a band. Even though it was brought to my

> attention 5 months ago it is just now that I'm obtaining the

> terminology and information to begin researching it. I've learned

so

> much in the last few days.

>

> I'd love to get to know all of you and your kids!

>

>

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Hi ,

Welcome to the group! A lot of ppl here will tell you that the Oak

Brook CT is a great place! You will be in GREAT hands!

Once again welcome to the group.

> Hi! I'm and my husband, son and I live in the South Subs of

> Chicago. We just started the process for getting Nick's DOC Band

> yesterday. We will be going to Cranial Technologies in Oak Brook,

IL

> hopefully.

>

> Nick's Dr. noticed that his head was lopsided at his 4 month

> appointment. At the 6 month appointment she thought it looked

worse.

> Repositional therapy wasn't helping. Now at his 9 month appointment

> she wants to go ahead with a band. Even though it was brought to my

> attention 5 months ago it is just now that I'm obtaining the

> terminology and information to begin researching it. I've learned

so

> much in the last few days.

>

> I'd love to get to know all of you and your kids!

>

>

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  • 1 month later...
Guest guest

Hi Nikki - welcome to our group!

Ohhh, I can imagine how stressed you are by this. I'll simply 2nd

everything Marci has replied to you.

Keep us posted on how she tolerates it. best of luck!

Hang in there, and please don't feel guilty.

Debbie Abby's mom dOCGrad

MI

> > hi everyone my name is nikki and my 7 month old daughter

> morgan just

> > got a helmet yesterday, im so frustrated by this, as she is, i

> cant

> > seem to get the helmet on right and when i do get it on she

> cries

> > she just hates anything on her head, for some reason when

> anything

> > goes on her head she acts like shes holding her breath. i can

> > distract her for awhile but she goes right back at pulling at it

> > pleases tell me this gets easier. morgan always favored her

> left

> > side and when she turned 3 months i noticed her head was

> getting

> > flat i asked her doctor he said to turn her head,i did that but she

> > would always put it right back, at six months the problem was

> worse

> > so now here we are with a helmet, her head began to correct

> itself

> > just a little but shes still stuck with the helmet. i feel so bad

> > for her and i blame myself if only i would've made her lay on

> her

> > right side all the time. im really happy there are people out

> there

> > who understand me and my situation. thank you all for

> listening to

> > me

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Guest guest

Hi Nikki: Welcome to the group! I know exactly how you feel, My

daughter for some reason didn't like the helmet, I was so frustrated

by it, and just to see her uncomfortable it really got me, no to

mention that she developed a very bad cold, a heat rash cause of the

helmet plus she is teething all this the same day she got the helmet,

talking about having a hard time, I'm telling you what a challenge!,

has been banden since 03/25/03 and I can tell you that it gets

easier, didn't like hats either, but little by little she is

getting used to, it takes some babies some time to get used to, but

from experience I can tell you that your baby will, just give her a

couple of weeks, does the same thing she tries to get the

helmet off, don't worry she will get used to. Hanging there, well,

let me say let's hanging there, I'm sure we will get through! and

Please don't blame yourself for it, It's not your fault or mine. You

are a great mommy.

and (8 months)

--- In Plagiocephaly , " le_snuggle " <le_snuggle@y...>

wrote:

> hi everyone my name is nikki and my 7 month old daughter morgan

just

> got a helmet yesterday, im so frustrated by this, as she is, i cant

> seem to get the helmet on right and when i do get it on she cries

> she just hates anything on her head, for some reason when anything

> goes on her head she acts like shes holding her breath. i can

> distract her for awhile but she goes right back at pulling at it

> pleases tell me this gets easier. morgan always favored her left

> side and when she turned 3 months i noticed her head was getting

> flat i asked her doctor he said to turn her head,i did that but she

> would always put it right back, at six months the problem was worse

> so now here we are with a helmet, her head began to correct itself

> just a little but shes still stuck with the helmet. i feel so bad

> for her and i blame myself if only i would've made her lay on her

> right side all the time. im really happy there are people out there

> who understand me and my situation. thank you all for listening to

> me

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Guest guest

Tricia,

I'll just join the crowd and agree with everything Debbie,

and have already said. My daughter was what

you might call a HIGH maintenance baby - I was absolutely

positive that she would not wear the helmet and that it would be

a total failure. How wrong I was. She never cared for one second!

It's amazing, but in the 2.5 + years that I have been with this

group we have never really had anyone whose baby did not

adjust to the band. Some babies took a little longer then others,

but for the most part it takes just a day or two if that!

Take care and let us know how things are going.

Marci (Mom to )

Oklahoma

?|?llagiocephaly , " tish8234 "

<tish8234@y...> wrote:

> Hello, My name is Tricia and I have a 4month old boy named

who

> is as stubborn as he is cute. He will not stay on his side and

hates

> tummy time. I need to keep him off of the left back side of his

head

> due to plagio. The peds Dr. recommened a neuro surgeon

consult but

> with our financial situation and insurance not covering a device

to

> help, we can't afford it. I know he would not tolerate a helmet or

> band. I would like to get advice from anyone who has corrected

this

> problem on their own without medical intervention. Thank you,

Tricia

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Guest guest

Hi Tricia

The people in this group are amazing and have supplied me with a

wealth of info....

My son will be getting his helmet in a couple of months. We did

very agressive repositioning and it helped somewhat, but it was very

difficult, as my son hated his tummy too. I put some pics of

Ethan's head at 3 months and then later (8, 9 and 10 months) in the

photos section under " Ethan's " .

One thing that I found helped during tummy time was putting a rolled

up towel under Ethan's chest. It proped him up a bit and made tummy

time a bit more bearable. Another thing that worked was putting him

in such a way that he was proped on his elbows (does that make

sense?).

I would do what the others have suggested. I dont' know much about

the insurance side of things (I am in Canada) but there is alot of

great info about appeals and such on these boards. I am sure that

you can find all the info and help you need.

Good luck!

, mom to Ethan.

--- In Plagiocephaly , " tish8234 " <tish8234@y...>

wrote:

> Hello, My name is Tricia and I have a 4month old boy named

who

> is as stubborn as he is cute. He will not stay on his side and

hates

> tummy time. I need to keep him off of the left back side of his

head

> due to plagio. The peds Dr. recommened a neuro surgeon consult but

> with our financial situation and insurance not covering a device

to

> help, we can't afford it. I know he would not tolerate a helmet or

> band. I would like to get advice from anyone who has corrected

this

> problem on their own without medical intervention. Thank you,

Tricia

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