NEW

[Guest guest]

Hi Boopsie,

Welcome to our group. I'm sorry to hear that you are having such a hard

time. I hope that you can find some comfort and the answers that you are

looking for here.

Love and Hugs

Stacey in PA

[Guest guest]

Welcome to our group. Sorry you¹ve had such a bad reaction to the mtx. I

can understand why you¹re apprehensive to try other drugs. If you¹re not

happy with your current rheumatologist, maybe a new one would be better.

I¹ve been on Enbrel since it¹s been approved with no side effects, but there

is always a potential of side effects with all the meds, even common

aspirin.

Pity parties are welcome here, but sorry you need one.

a

> HI

> I'm new tot he group I have been diaqgnosed for three years or so/ In

> Feb of 2001 I was diagnodsed with Pulmonary Fibrosis caused from

> Methotresate so I am very didsabled although I still work full time

> then come home and colaspe I have tio use supplemental oxygen and

> sleep with it at night I still have troublre breathing and some dayds

> my O2 level is 88%. I also take plaquenol. prendisone sand was taking

> Arava until I read about bad side effects on liver and kidneys. I was

> finally approvred for Enbrel but now am dshy of that becaudse of

> negative reports, I can't afford to damagr any more organs so I guess

> I will just suffer in pain and maybre gret dome pain meds. I sam also

> a diabetic on insulin so this along with all my meds has made me gain

> a ton of weight dso this doedsn't help anything. I guess I am just

> having a pity party for myself tonight I don.t usually do thids but I

> am fed up. My rheumatologist although has a great reputation he

> doesn't give em any ansewers or talk about RA and what to expect, I

> sam considering changing DXoctors. please give me info and

> encouargment.

> Boopsie2003

>

>

>

>

[Guest guest]

Thanks for the support, I saw my primary today and had a little cry, she

increased my antideprresssants she thinks I am depressed from dealing with all

this health stuff. What do you know about the arava?

Re: [ ] new

Welcome to our group. Sorry you¹ve had such a bad reaction to the mtx. I

can understand why you¹re apprehensive to try other drugs. If you¹re not

happy with your current rheumatologist, maybe a new one would be better.

I¹ve been on Enbrel since it¹s been approved with no side effects, but there

is always a potential of side effects with all the meds, even common

aspirin.

Pity parties are welcome here, but sorry you need one.

a

> HI

> I'm new tot he group I have been diaqgnosed for three years or so/ In

> Feb of 2001 I was diagnodsed with Pulmonary Fibrosis caused from

> Methotresate so I am very didsabled although I still work full time

> then come home and colaspe I have tio use supplemental oxygen and

> sleep with it at night I still have troublre breathing and some dayds

> my O2 level is 88%. I also take plaquenol. prendisone sand was taking

> Arava until I read about bad side effects on liver and kidneys. I was

> finally approvred for Enbrel but now am dshy of that becaudse of

> negative reports, I can't afford to damagr any more organs so I guess

> I will just suffer in pain and maybre gret dome pain meds. I sam also

> a diabetic on insulin so this along with all my meds has made me gain

> a ton of weight dso this doedsn't help anything. I guess I am just

> having a pity party for myself tonight I don.t usually do thids but I

> am fed up. My rheumatologist although has a great reputation he

> doesn't give em any ansewers or talk about RA and what to expect, I

> sam considering changing DXoctors. please give me info and

> encouargment.

> Boopsie2003

>

>

>

>

[Guest guest]

Boopsie,

We all have pity parties at one time or another (maybe it's prerequisite for

RA). You will find this group to be very caring. Sometimes it just helps to

read everyone's input and realize we aren't alone in our daily struggles. There

are others who know exactly how we feel and exactly what we are going through.

You are in our thoughts and prayers.

[ ] new

HI

I'm new tot he group I have been diaqgnosed for three years or so/ In

Feb of 2001 I was diagnodsed with Pulmonary Fibrosis caused from

Methotresate so I am very didsabled although I still work full time

then come home and colaspe I have tio use supplemental oxygen and

sleep with it at night I still have troublre breathing and some dayds

my O2 level is 88%. I also take plaquenol. prendisone sand was taking

Arava until I read about bad side effects on liver and kidneys. I was

finally approvred for Enbrel but now am dshy of that becaudse of

negative reports, I can't afford to damagr any more organs so I guess

I will just suffer in pain and maybre gret dome pain meds. I sam also

a diabetic on insulin so this along with all my meds has made me gain

a ton of weight dso this doedsn't help anything. I guess I am just

having a pity party for myself tonight I don.t usually do thids but I

am fed up. My rheumatologist although has a great reputation he

doesn't give em any ansewers or talk about RA and what to expect, I

sam considering changing DXoctors. please give me info and

encouargment.

Boopsie2003

[Guest guest]

Thaniks for your support, I really need it today a bit depressed hope the new

med works soon, my doctor put me in antidepressants because I have so many

illnesses she thinks I am depressed from dealing with them I agree.

[ ] new

HI

I'm new tot he group I have been diaqgnosed for three years or so/ In

Feb of 2001 I was diagnodsed with Pulmonary Fibrosis caused from

Methotresate so I am very didsabled although I still work full time

then come home and colaspe I have tio use supplemental oxygen and

sleep with it at night I still have troublre breathing and some dayds

my O2 level is 88%. I also take plaquenol. prendisone sand was taking

Arava until I read about bad side effects on liver and kidneys. I was

finally approvred for Enbrel but now am dshy of that becaudse of

negative reports, I can't afford to damagr any more organs so I guess

I will just suffer in pain and maybre gret dome pain meds. I sam also

a diabetic on insulin so this along with all my meds has made me gain

a ton of weight dso this doedsn't help anything. I guess I am just

having a pity party for myself tonight I don.t usually do thids but I

am fed up. My rheumatologist although has a great reputation he

doesn't give em any ansewers or talk about RA and what to expect, I

sam considering changing DXoctors. please give me info and

encouargment.

Boopsie2003

[Guest guest]

Dear ...Welcome to our family. I am so sorry you have so much to

deal with. I struggle with depression, and the meds I'm on make a world

of difference. I hope things look brighter for you very soon.

Love & Hugs...

Tess in NW Oregon

[Guest guest]

Dear Boopsie2003:

Hi, my name is . I have RA about 7 years now, also I have several

other illnesses.

I know how you feel, I think. I get down in the dumps sometimes too. I have

a kidney transplant, and asthma and another breathing problem called

atelectasis. I have had it for about 7 years took and none of my Doctors

knew what it was. Finally I found a Doctor that did. I was always so short

of breath and couldn't walk more than 10 feet without getting winded and then

I had to sit down. I am now on Advair and although I still have the

condition, I am a little better. I also have a back problem from an accident

and OA, DDD, sciatica, osteoarthritis, and osteoporosis. I still can't walk

very far, but I am not giving up on myself yet.

After reading your email I felt I had to write a few words to you. Hang in

there. Try to get a new Doctor if you feel your Doctor doesn't do what you

think he should. By the way, where do you live? Maybe, myself or one of the

other members of RA can tell you of a Doctor they know that might help you.

God Bless,

Sincerely, Colletti

Anjillah@...

[Guest guest]

In a message dated 11/20/02 12:04:05 PM Eastern Standard Time, asarvis@... writes:

Hello,

I am new to this group. My son Will was diagnosed with plagiocephaly secondary to torticollis a little less than a week ago. He has a slight soft spot behind his left ear. My physical therapist said to position him where he allows turns to the left to help resove his tort. I am worried this will increase his plagiocephaly. Does anyone have any suggestions???

thank you,

ashley (sc)

, You're in South Carolina? Where at in South Carolina? We're in ton and there's a wonderful craniofacial clinic here... they really answered our questions and seem to be wanting to help our son....

mommy to Tiernan

ton, SC

[Guest guest]

,

Welcome to the group. My son also developed secondary plagio as a result of the tort. I would guess that your son has left tort, if the pt is wanting you to have him turn his head left? As you probably already know, the torticollis usually affects one side, and the plagio develops on the other as a result of the constant preference or lack of ability to use the tort side. Please share a little more of your story to get an idea of what you are dealing with, tort can be very different for different reasons, severity, some kids have great range of motion, others don't, tilt, no tilt, etc. Dealing with tort makes it very hard to reposition, the child's neck muscle is usually so tight that it acts as a spring or rubberband, pulling it back to that position simply because the muscle is too short or tight to allow the slack to let that head go in that tort direction. You should arrange things of interest (tv, toys) to the side of the tort, encouraging the child to rotate in that direction- while at the same time, keeping the child off that non-tort back of the head which is flattening due to the constant turning in that one direction. Encourage tummy time. Encourage using the tort side of the body, grasping for toys, etc. Also check out www.torticolliskids for great tort advice as well. Again, welcome to the group, and I look forward to hearing more about your little one.

' Mom (severe tort resolved, DOC grad)

[Guest guest]

HI & welcome to our group!

Oooh, that sounds pretty confusing what your therapist suggested.

I'll let some of the other tort parents in our group help you with

that question. Obviously, the more Will lays on his flat side, the

worse his plagio may become. But with tort., repositioning can be

VERY difficult.

How old is Will? How long has he been receiving pt? Is his tort

improving?

For repositioning tips you can check out

www.plagiocephaly.org/support then " repositioning tips " .......best of

luck. Welcome again!

Debbie Abby's mom DOCGrad

MI

> Hello,

>

> I am new to this group. My son Will was diagnosed with

> plagiocephaly secondary to torticollis a little less than a week

> ago. He has a slight soft spot behind his left ear. My physical

> therapist said to position him where he allows turns to the left to

> help resove his tort. I am worried this will increase his

> plagiocephaly. Does anyone have any suggestions???

>

> thank you,

> ashley (sc)

[Guest guest]

Hi ,

Welcome to the group! Have you joined torticolliskids yet? If not,

you really should. It's a great group and I'm sure they will be able

to answer any question you have.

Torticolliskids/

I found it near impossible to reposition my daughter off her flat

spot. She too had tort. That's not to say that repositioning a baby

with tort can't work. It just didn't work for us.

Here is a web site that is all about repositioning, it's a

repositioning success story and very informative!

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

How old is your son?

Once again welcome to the group.

> Hello,

>

> I am new to this group. My son Will was diagnosed with

> plagiocephaly secondary to torticollis a little less than a week

> ago. He has a slight soft spot behind his left ear. My physical

> therapist said to position him where he allows turns to the left to

> help resove his tort. I am worried this will increase his

> plagiocephaly. Does anyone have any suggestions???

>

> thank you,

> ashley (sc)

[Guest guest]

,

Thank you for the info. I will tell you a little more about my son

so you have a better understanding of his condition. Looking back I

now realize my son had a left tilt since birth. I attributed it to

weak neck muscles and just tried to center align his head with

towels or receiving blankets. Around 2 weeks of age he developed

colic and would only sleep in his bouncer. The tilt became much

more pronounced and the flattening behind his left ear became

noticeable to my mother only. Around 5-6 weeks we moved him back to

his bassinet and tried to reposition him. The tilt and the

flattening improved. At his 8 week check-up he was dx. with tort

and plagiocephaly. We began PT yesterday. He bends his left ear to

his left shoulder and turns his head to the right. The PT said he

had mild plagiocephaly and it would most likely resolve on its own.

We began the exercising and stretching yesterday. He will go twice

a week for now (30 min. each).There is little resistance when doing

the exercises. He turns his head to the left himself (actually

prefers) when he is on his tummy. The PT did say she felt a small

knot in his left side but felt it was only minor. I have found it

difficult to keep him turning to the left without being on his flat

spot. Does this paint a better picture??? Any ideas would be

grately appreciated. Tell me a little more about you child.

(SC)

> ,

> Welcome to the group. My son also developed secondary plagio as a

result of

> the tort. I would guess that your son has left tort, if the pt is

wanting

> you to have him turn his head left? As you probably already know,

the

> torticollis usually affects one side, and the plagio develops on

the other as

> a result of the constant preference or lack of ability to use the

tort side.

> Please share a little more of your story to get an idea of what

you are

> dealing with, tort can be very different for different reasons,

severity,

> some kids have great range of motion, others don't, tilt, no tilt,

etc.

> Dealing with tort makes it very hard to reposition, the child's

neck muscle

> is usually so tight that it acts as a spring or rubberband,

pulling it back

> to that position simply because the muscle is too short or tight

to allow the

> slack to let that head go in that tort direction. You should

arrange things

> of interest (tv, toys) to the side of the tort, encouraging the

child to

> rotate in that direction- while at the same time, keeping the

child off that

> non-tort back of the head which is flattening due to the constant

turning in

> that one direction. Encourage tummy time. Encourage using the

tort side of

> the body, grasping for toys, etc. Also check out <A

HREF= " www.torticolliskids@y... " >

> www.torticolliskids@y...</A> for great tort advice as well.

Again,

> welcome to the group, and I look forward to hearing more about

your little

> one.

>

> ' Mom (severe tort resolved, DOC grad)

[Guest guest]

Hi Ashely,

Hmm, I'm trying to figure out the details of the tort and plagio that

Will has from your post. I'm not sure I totally understand, but any

kind of positioning that would put Will on his flat spot is going to

aggravate the plagio and possibly cause additional problems

such as ear misalignment and/or facial assymetry. I'm hoping

one of our tort " experts " will step in here and speak to this issue.

(, ?) Have you seen a specialist about the plagio

and if so, does that person have any suggestions regarding

positioning. I wish I could be more helpful.

Welcome to the group and all my best to you and Will.

Marci (Mom to )

Oklahoma

> Hello,

>

> I am new to this group. My son Will was diagnosed with

> plagiocephaly secondary to torticollis a little less than a week

> ago. He has a slight soft spot behind his left ear. My physical

> therapist said to position him where he allows turns to the left

to

> help resove his tort. I am worried this will increase his

> plagiocephaly. Does anyone have any suggestions???

>

> thank you,

> ashley (sc)

[Guest guest]

tortstretches

babymassage

files

head shapes

whats tort

Repositioning Techniques

Baby Slings, Baby rs from Maya Wrap

Snuglbuds Inc., Innovative Infant and Toddler Products

Baby Pillow, Baby Gift, Prevent Flat head, Baby Gear, Infant Pillow

Boppy Nursing and Infant Support Pillows, Play Mats and Activity Gyms

welcome beck

[Guest guest]

Hey welcome glad you re here if you haven't seen my links yet I will forward themon to you. They should be helpful in getting to understand the whole process. What part ofTexas are you from? I used to be in Dallas we have lots of doc babies there and lots of moms. We would love to hear more about you. You've come to the right place for info and support. Welcome again.

beck

memphis tn

Questions for the Doctor

commonplagioquestions

files

head shapes

DOC

Orthomerica

COMPAREHELMET

Find a Preferred Physician: Search by Location

[Guest guest]

Welcome to the group! The people in this group are very helpful and supportive. I am in Missouri but I know there are many members from Texas. I am sure they will reply.

How wonderful for your pediatrician to suggest seeing another doctor. It sounds like you have a great pediatrician.

My daughter wore a STARband. We had a wonderful and very experienced orthotist. I can't think of any downs except my insurance didn't pay for it. She never minded wearing the band. She wore it 12 weeks and she received 80% correction. Her head has continued to round since she graduated from her band. She was 9 months when she was banded.

Please keep us posted on your son. How old is he?

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

New

I am new here. My son has not even been to the doctor yet. My ped said he wanted him to go see someone about his head and I was doing research about it on the internet and founds this group. I was just woundering if yall could give me some do's and don'ts about this whole process. The ups and owns also please. I live in Texas and I could use some help finding a doctor. ThanksFor more plagio info

[Guest guest]

Hi,

Welcome to the group! We have a few memebers from Texas. I'm sure as

soon as they see your post they'll respond.

The only thing I can tell you is if ANY of these doctors tell you

that your son's head will round out on its own, ask them if they can

put that in writing! Some babies heads do round out, most don't!

How old is your son? Are you near a Cranial Tech office? They make

the DOCband. There is one in Dallas and one in Houston. Here is their

web address.

www.cranialtech.com

Cranial Technologies, Inc.

Concorde on the Creek

6750 Hillcrest Plaza Dr. #200A

Dallas, TX 75230

Phone: 972-239-3555

Toll Free: 866-239-0626

Fax: 972-239-4011

Clinician: Todd, OTR

Clinician: Amy Gallagher, OTR

Clinician: Shobhna Patel, OTR

Clinician: Dee Spearman, OTR

Houston, Texas

Orthotic & Prosthetic Associates

25325 Borough Park Dr., #210

The Woodlands, TX 77380 (Houston)

Phone: 281-296-8448

Fax: 281-296-8858

Clinician: Bob Cook, LO, BOC

Clinician: Barbara Farley, LO, BOC

They give free honest evaluations. You can also look into the

STARband their web address is www.orthomerica.com

Please keep us posted on your son.

> I am new here. My son has not even been to the doctor yet. My ped

> said he wanted him to go see someone about his head and I was doing

> research about it on the internet and founds this group. I was just

> woundering if yall could give me some do's and don'ts about this

> whole process. The ups and owns also please. I live in Texas and I

> could use some help finding a doctor. Thanks

[Guest guest]

He is 10 months old now.

> Welcome to the group! The people in this group are very helpful

and supportive. I am in Missouri but I know there are many members

from Texas. I am sure they will reply.

>

> How wonderful for your pediatrician to suggest seeing another

doctor. It sounds like you have a great pediatrician.

>

> My daughter wore a STARband. We had a wonderful and very

experienced orthotist. I can't think of any downs except my

insurance didn't pay for it. She never minded wearing the band.

She wore it 12 weeks and she received 80% correction. Her head has

continued to round since she graduated from her band. She was 9

months when she was banded.

>

> Please keep us posted on your son. How old is he?

>

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

> New

>

>

> I am new here. My son has not even been to the doctor yet. My

ped

> said he wanted him to go see someone about his head and I was

doing

> research about it on the internet and founds this group. I was

just

> woundering if yall could give me some do's and don'ts about this

> whole process. The ups and owns also please. I live in Texas and

I

> could use some help finding a doctor. Thanks

>

>

>

[Guest guest]

Hi there!

I'm pretty new to this group too, but I'm finding thwt everyone is

very nice and extermely knowledgeable about plagio. My 8 month old

daughter was casted for her band last week, but the back of her head

has been flat for months. I'm also in Texas (San ) and

andra's care is being done through the military, but I know that

there is a lot of stuff done for plagio in Houston. Good luck, and I

hope you find this group helpful!

, mom to andra

waiting for her STARband to come in!

> I am new here. My son has not even been to the doctor yet. My ped

> said he wanted him to go see someone about his head and I was doing

> research about it on the internet and founds this group. I was just

> woundering if yall could give me some do's and don'ts about this

> whole process. The ups and owns also please. I live in Texas and I

> could use some help finding a doctor. Thanks

[Guest guest]

Hello and welcome! Glad to have you with us.

Whereabouts are you in Texas? We have a bunch of members in Texas and

I see you have already heard from a couple of them.

How old is your son? The great thing about bands/helmets is that they

work and they are painless! Check out www.plagiocephaly.org/support

for some great information about plagio and a list of questions to

ask the doctor. You might want to print those questions and have them

handy when you go to the specialist.

Best wishes to you as you being your quest and we would love to hear

more about your son.

Marci (Mom to )

Oklahoma

> I am new here. My son has not even been to the doctor yet. My ped

> said he wanted him to go see someone about his head and I was doing

> research about it on the internet and founds this group. I was just

> woundering if yall could give me some do's and don'ts about this

> whole process. The ups and owns also please. I live in Texas and I

> could use some help finding a doctor. Thanks

[Guest guest]

Thanks! We live in Waco. I have been to that website and saw all the great info it had! I am thinking about taking the questions with me when i go. Ill keep in touch! Rhiannon, mom to Bryce 10 months

LoVe .... RhIaNnON

http://www.brycemarshall.com

>From: "Marci Corey"

>Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New >Date: Tue, 06 May 2003 02:53:48 -0000 > >Hello and welcome! Glad to have you with us. > >Whereabouts are you in Texas? We have a bunch of members in Texas and >I see you have already heard from a couple of them. > >How old is your son? The great thing about bands/helmets is that they >work and they are painless! Check out www.plagiocephaly.org/support >for some great information about plagio and a list of questions to >ask the doctor. You might want to print those questions and have them >handy when you go to the specialist. > >Best wishes to you as you being your quest and we would love to hear >more about your son. > >Marci (Mom to ) >Oklahoma > > > > I am new here. My son has not even been to the doctor yet. My ped > > said he wanted him to go see someone about his head and I was doing > > research about it on the internet and founds this group. I was just > > woundering if yall could give me some do's and don'ts about this > > whole process. The ups and owns also please. I live in Texas and I > > could use some help finding a doctor. Thanks > MSN 8 with e-mail virus protection service: 2 months FREE*

[Guest guest]

Hi there and glad you could find the group.

I too am in Texas about 50 miles South of Dallas. Actually closer to

Waco than Dallas. If you will go to the database part of the group

there is, I think 2 Band friendly specialist's in the Dallas area to

go and visit. You can also go to Cranial Tech in Dallas for a free

Eval. From what I understand, there is NOTHING in Waco as far as

Banding is concerned. As a matter of fact, I met a lady from Waco at

the Specialist in Dallas, she said the experience level of the

doctors were not enough for her.

If I can be of more help, just let me know. I have a 13 month old

daughter, . Ok, I have 3 girls and she was my plagio baby! Hey,

if you go to Dallas for a dr visit, you will drive right by me!! lol

Dustie, mom to , DOC Grad

> I am new here. My son has not even been to the doctor yet. My ped

> said he wanted him to go see someone about his head and I was doing

> research about it on the internet and founds this group. I was just

> woundering if yall could give me some do's and don'ts about this

> whole process. The ups and owns also please. I live in Texas and I

> could use some help finding a doctor. Thanks

[Guest guest]

thanks for all your help.

LoVe .... RhIaNnON

http://www.brycemarshall.com

>From: "dustiejo2002"

>Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New >Date: Tue, 06 May 2003 14:05:45 -0000 > >Hi there and glad you could find the group. > >I too am in Texas about 50 miles South of Dallas. Actually closer to >Waco than Dallas. If you will go to the database part of the group >there is, I think 2 Band friendly specialist's in the Dallas area to >go and visit. You can also go to Cranial Tech in Dallas for a free >Eval. From what I understand, there is NOTHING in Waco as far as >Banding is concerned. As a matter of fact, I met a lady from Waco at >the Specialist in Dallas, she said the experience level of the >doctors were not enough for her. > >If I can be of more help, just let me know. I have a 13 month old >daughter, . Ok, I have 3 girls and she was my plagio baby! Hey, >if you go to Dallas for a dr visit, you will drive right by me!! lol > >Dustie, mom to , DOC Grad > > > > I am new here. My son has not even been to the doctor yet. My ped > > said he wanted him to go see someone about his head and I was doing > > research about it on the internet and founds this group. I was just > > woundering if yall could give me some do's and don'ts about this > > whole process. The ups and owns also please. I live in Texas and I > > could use some help finding a doctor. Thanks > Protect your PC - Click here for McAfee.com VirusScan Online

[Guest guest]

Welcome Charlie,

I believe that the low reccommended dose is 1.75....and no, you

should stay on you first dose for at least a month.....and then I

would go up slowly (if at all). Let your system get used to the

dose....who knows it may be the dose you stay on. With LDN, more is

not always better. I think I found that out the hard way.

I am on 4.5mg and I was happier on 3mg, so I'm going back down, I

guess I expected a miracle and didnt get one, so I thought maybe the

4.5 would be better....wrong.

Some people are doing very well on 4.5, and others are doing well

on 3, and lower.

Best wishes and hope all goes well for you on LDN.

Sally

> hi,

> i am new to the list and have a question. is it wise to get 1.5

mg

> capsules to begin with and just take two or three if i decide to

up the

> dose to 3.0 or 4.5 ?

> i am going to use skips pharmacy and have e-mailed them for a 30

day price.

> i find your comments very helpful. i hope this stuff works for me.

>

> charlie siracuse

> cscob@n...

[Guest guest]

An excellent strategy. I wish I had known to do it that way. Remember it

has to be fast release and not be lactose based filler (many people had a

bad reaction to the lactose based filler LDN).

B.