new to the group

[Guest guest]

Hi Brad,

I have been looking at it the same way you have. There is another

group named RED - rheumatoid-exercise-diet that focuses on food and

exercise and RA.

Also here is a link to a doc that does food allergy testing. He has

done some

work with RA patients. I started to see him but I couldn't afford to

go through the whole process. But did find

out through him I'm extremely allergic to eggs which I ate all the

time, and had allergies to

poultry as well. So in the last 6 weeks I became a vegetartian and

have stopped

w/ processed foods.

http://www.doctorbannock.com/

-Maggie

--- In , Brad Berg <blueworld_of_fire@...>

wrote:

>

> ,

>

> I wouldn't say that our immune systems are broken -- rather they are

overly tuned to the environment. Though there's more to it obviously,

I've been thinking of my RA in terms of a food allergy. Sounds pretty

foolish, and I laughed when a coworker first suggested it, but after a

while and seeing how the immune system responds, I began to agree it

almost reacts the same way as an allergy. I have a number of

allergies, and there seems to be a lot of correlation. When I eat

tomatoes, potatoes or green peppers, my RA kicks it up a notch within

several hours. I try to stay away from those foods but there are

forms of concentrated tomato and potato ingredients within most

processed food (which I fall to when veggies aren't always in the

house) and I wonder if my RA factor isn't high right now because I've

been eating those foods a bit more lately.

>

> Brad

>

[Guest guest]

Brad,

The rheumy would keep a close check to see if the DMARD is causing any

adverse side effects. Blood work is done often for this purpose. Joint

damage is irreversible. When my RA first started, my pain was so bad

that I was willing to try just about anything. When methotrexate and

then Arava caused my white blood cell count to get too low, I was

switched to Enbrel. I've been on it for over five years, and have had

no adverse side effects. Just because a medication causes certain side

effects in some people, it doesn't mean that it will do the same thing

in you.

What is this alternative therapy, and by whom was it proven to work? It

sounds to me more dangerous than the DMARDs.

Sue

On Wednesday, September 17, 2008, at 09:50 PM, Brad Berg wrote:

> The rheumy now

> is saying I should really start DMARDs. I understand the benefits of

> taking them and what they do, but it is because they also can cause

> organ damage and suppress the immune system that I do not wish to

> take them. I do not want to trade one problem for a host of others.

> I am currently seeking a proven method of alternative therapy that

> can mask the synovial fluid in my joints so that my immune system

> doesn't think of it as foreign. Has anyone ever heard of anything

> that could do that? I just don't want to screw my body up with all

> these toxic DMARDs.

[Guest guest]

I do, too, Kate. It's worked for me for over five years. I hope my good

luck continues.

Sue

On Thursday, September 18, 2008, at 12:20 PM, Fair wrote:

>  

> That said, I *love* and believe in Enbrel. 

[Guest guest]

Brad,

I wanted to welcome you to the group.

I have not tried the homopathic route. When I first saw the rheummy

I was in such pain and so tired of hurting, I was ready for whatever

gave quick results. However, it did take many months to get the

results that I wanted. I doubt anything works quick enough when we

start treatment.

I do hope that it works for you and that you have fantastic results.

I know that it takes a lot of discipline and I am not very good in

that area.

Shirley

>

> Hi everyone,

> My name is Brad from Wisconsin, I'm 35 years old, and I was

diagnosed

> with RA in November of 2007, so I'm a newbie to this cranky old

> malaise we share. I decided to join this group at this point

because

> I am at a pivotal moment in my treatment. I am a treehugging,

nature-

> loving, organic locavore type who is strongly against taking

anything

> worse than ibuprofen. Though I accept the validity of it, I

distrust

> the medical community and tend to desire alternative therapies for

> the managing of my own treatment. My first bloodtest in November

had

> an RA factor of 1:120. I began taking glucosamine/chondroitin/MSM

> supplements along with added calcium and salmon oil supplements.

I

> also took ibuprofen on an as-needed basis. I still take all of

these

> though my ibuprofen intake has increased a bit (about 1200mg a day

> now). Last week, my RA factor was tested at 1:320. The rheumy

now

> is saying I should really start DMARDs. I understand the benefits

of

> taking them and what they do, but it is because they also can

cause

> organ damage and suppress the immune system that I do not wish to

> take them. I do not want to trade one problem for a host of

others.

> I am currently seeking a proven method of alternative therapy that

> can mask the synovial fluid in my joints so that my immune system

> doesn't think of it as foreign. Has anyone ever heard of anything

> that could do that? I just don't want to screw my body up with

all

> these toxic DMARDs.

>

> Thanks,

> Brad

>

[Guest guest]

Hi Brad,

 

I do take Plaquenil because I don't want the disease to progress.  But I find

especially wheat and sugar cause me to feel worse.  I can't always stick to it,

but if I go off wheat I feel better within a couple days.  Especially my hips

and knees. 

 

[ ] RE: New to the group

,

I wouldn't say that our immune systems are broken -- rather they are overly

tuned to the environment.  Though there's more to it obviously, I've been

thinking of my RA in terms of a food allergy.  Sounds pretty foolish, and I

laughed when a coworker first suggested it, but after a while and seeing how the

immune system responds, I began to agree it almost reacts the same way as an

allergy.  I have a number of allergies, and there seems to be a lot of

correlation.  When I eat tomatoes, potatoes or green peppers, my RA kicks it up

a notch within several hours.  I try to stay away from those foods but there are

forms of concentrated tomato and potato ingredients within most processed food

(which I fall to when veggies aren't always in the house) and I wonder if my RA

factor isn't high right now because I've been eating those foods a bit more

lately.

 

Brad

[Guest guest]

well welcome brad...i can see what u r talking about...what's

different for me is that i have all the meds and infusions going on

already....and i am worried that my body is not handling it well. i

have extremely dry skin, bruises, and even some white blotches on my

skin. so i was wanting to switch down to something less....like

natural remedies....know any??

Lizzy

> >

> > Hi everyone,

> > My name is Brad from Wisconsin, I'm 35 years old, and I was

> diagnosed

> > with RA in November of 2007, so I'm a newbie to this cranky old

> > malaise we share. I decided to join this group at this point

> because

> > I am at a pivotal moment in my treatment. I am a treehugging,

> nature-

> > loving, organic locavore type who is strongly against taking

> anything

> > worse than ibuprofen. Though I accept the validity of it, I

> distrust

> > the medical community and tend to desire alternative therapies

for

> > the managing of my own treatment. My first bloodtest in November

> had

> > an RA factor of 1:120. I began taking

glucosamine/chondroitin/MSM

> > supplements along with added calcium and salmon oil supplements.

> I

> > also took ibuprofen on an as-needed basis. I still take all of

> these

> > though my ibuprofen intake has increased a bit (about 1200mg a

day

> > now). Last week, my RA factor was tested at 1:320. The rheumy

> now

> > is saying I should really start DMARDs. I understand the

benefits

> of

> > taking them and what they do, but it is because they also can

> cause

> > organ damage and suppress the immune system that I do not wish to

> > take them. I do not want to trade one problem for a host of

> others.

> > I am currently seeking a proven method of alternative therapy

that

> > can mask the synovial fluid in my joints so that my immune system

> > doesn't think of it as foreign. Has anyone ever heard of

anything

> > that could do that? I just don't want to screw my body up with

> all

> > these toxic DMARDs.

> >

> > Thanks,

> > Brad

> >

>

[Guest guest]

hi lizzy i to live in corpus christi. yes i do have dry skin,major bruising, &

white blotches if that's what u want to call them. i have

noticed it more whenever they draw blood or i have an i.v. put in me for testing

or what not. omg i can't believe there's actually someone chatting fom c.c.tx.

likme me god bless,melyndagamez 9/19/08 11:36p.m.cdt

[ ] Re: New to the group

well welcome brad...i can see what u r talking about...what's

different for me is that i have all the meds and infusions going on

already....and i am worried that my body is not handling it well.  i

have extremely dry skin, bruises, and even some white blotches on my

skin.  so i was wanting to switch down to something less.....like

natural remedies....know any??

Lizzy

> >

> > Hi everyone,

> > My name is Brad from Wisconsin, I'm 35 years old, and I was

> diagnosed

> > with RA in November of 2007, so I'm a newbie to this cranky old

> > malaise we share.  I decided to join this group at this point

> because

> > I am at a pivotal moment in my treatment.  I am a treehugging,

> nature-

> > loving, organic locavore type who is strongly against taking

> anything

> > worse than ibuprofen.  Though I accept the validity of it, I

> distrust

> > the medical community and tend to desire alternative therapies

for

> > the managing of my own treatment.  My first bloodtest in November

> had

> > an RA factor of 1:120.  I began taking

glucosamine/chondroitin/MSM

> > supplements along with added calcium and salmon oil supplements.. 

> I

> > also took ibuprofen on an as-needed basis.  I still take all of

> these

> > though my ibuprofen intake has increased a bit (about 1200mg a

day

> > now).  Last week, my RA factor was tested at 1:320.  The rheumy

> now

> > is saying I should really start DMARDs.  I understand the

benefits

> of

> > taking them and what they do, but it is because they also can

> cause

> > organ damage and suppress the immune system that I do not wish to

> > take them.  I do not want to trade one problem for a host of

> others. 

> > I am currently seeking a proven method of alternative therapy

that

> > can mask the synovial fluid in my joints so that my immune system

> > doesn't think of it as foreign.  Has anyone ever heard of

anything

> > that could do that?  I just don't want to screw my body up with

> all

> > these toxic DMARDs.

> >

> > Thanks,

> > Brad

> >

>

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

[Guest guest]

Debbie,

Hello and welcome to this wonderful and caring group. It is quite

diverse, so you will find it interesting if nothing else.

I hate winter pain also. It is so much harder for me to get up and get

going. I hope this will be my last one working. If all goes well, my

plan is to retire in March.

Hope you have a good day.

Shirley

>

> Hello Everyone I am new to this group and thought it would be nice

to

> introduce myself. My name is Debbie, I'm 54 years old. I was

diagnosed

> with RA and fibromyalgia 10 years ago, PLUS I have clinical

> depression. I started taking HUMIRA about 3 years ago and so far so

> good as far as disfigurement. But I still have the pain, not

> constantly. We are going into winter and that is my hardest season

> with this disease. Well, I guess thats all I have to say for now.

> I'm excited to be in this group as I think we can all get new ideas,

> pros and cons.

>

[Guest guest]

Debbie and group;

Welcome to our humble group Debbie.. I am 54 years old also.. I also

have RA and fibro.. I am taking lyrcia for my fibro and it works

wonders for the pain.. I know some people can't take it.. I am so

glad I can.. As far as any side effects I been pretty lucky none

complain of..

I am on plaqunil and sulfazaline and they havent helped me at all.. I

know a lot of people it helps them... I started Humira about a month

agon and I felt the difference in about 24 hours,,, omg what a

relief.. The pain is all but gone.. I feel it now and than..

I know winter is on the way... I just try to stay out of the cold or

dress with layers.. And keep the heat up.. The group has a great

bunch here.. THey have been so comforting for me.. I hope we can for

you also.. I pray for a cure and pain free days for everyone.. God

bless and take care.

gentle hugs

Clora

> Hello Everyone I am new to this group and thought it would be nice

to

> introduce myself. My name is Debbie, I'm 54 years old. I was

diagnosed

> with RA and fibromyalgia 10 years ago, PLUS I have clinical

> depression. I started taking HUMIRA about 3 years ago and so far so

> good as far as disfigurement. But I still have the pain, not

> constantly. We are going into winter and that is my hardest season

> with this disease. Well, I guess thats all I have to say for now.

> I'm excited to be in this group as I think we can all get new ideas,

> pros and cons.

>

[Guest guest]

My ped also sent us directly to an orthotist and not a specialist - I have

complete confidence

in my ped and my orthotist so I felt there was no need to go see a specialist as

well. As long

as your ped has assessed the head and has ruled out craniocynostosis (where the

cranial

sutures close to early) through a thorough physical exam , I think it is fine to

skip the

specialist. That being said, if you feel like you would benefit from a referral

to one, just ask.

The last thing you want to do is have regrets. Good luck!

Meg, mom to Lucy 7m, STARband grad 1/12/09

Milwaukee, WI

>

> My 5 month old daughter has positional plagio. My ped sent us to

> Cranial Tech who said we need a band. I'd feel more comfortable with

> a specialist's opinion. Any one else bothered by the fact that some

> peds don't send you to an expert but straight to an orthotist instead?

>

[Guest guest]

Missy,My daughter, Maysa, got her DOC band when she was 9.5 months and although I was depressed around that time, I was also happy for her to be getting in a band that was actually going to work for her. She is 13 months old now and in a second DOC band, but I can tell you already that her head shape looks great as it is.The stares never bothered me. I decorate the band and have so much fun with it. Also, when people ask about it, I take the time to educate them about plagio and brachy. I only got one comment that didn't sit well with me and that still bother me a little bit. It went something like this: "So we were not happy with her head shape, huh? Is that why she is wearing a helmet?" It came out as if they were telling me that I was altering my daughter's "natural" look while in fact I am only

trying to get her back to the way her head looked like at birth, round and proportionate.Other than that, people have been really nice and believe me, Maysa has been wearing her helmet/band for a long time. If you want to read a little more about her story, check out her blog. I have an entry there about our visit to the neurosurgeon. I am not surprised by what they told you...Anyway, good luck to you and to your little guy. You are doing the right thing by doing something about it. I am sure that other people who have gone to your facility will reply to your post and help out even more.LeilaMaysa, 13 months old, week 2 in DOC band 2http://mymaysa.wordpress.com/ From: missylevin7

<missylevin7@...>Subject: New to the groupPlagiocephaly Date: Thursday, February 19, 2009, 7:57 AM

Hi,

My name is Missy. My son is Zev. He is almost 9 months old. He was

born with a lot of bruising on his head and was very coned. He also

had torticollis. My pediatrician told me to do stretches but Zev was

colicy for about a month and I did not want to hurt him....and I

thought I would do it wrong.....anyway,

around 3 months I noticed his head was flattening. The pediatrician

told me that it would round out so I waited. I was still not

satisfied so I took him to a neurosurgeon who said if it were his kid,

he would not helmet him. We tried repositional therapy for about 3-4

months although at that time he was already sleeping on his belly.

About a month ago I made another appointment with another nuerosurgeon

who also felt that he did not need it. He said it was not that bad.

I said that was not good enough. My husband was really against it.

Finally my father, who is a doctor consulted with someone out of state

who looked at pictures and said he was not going to get better on his

own and that he would benefit from a helmet...... .

We are getting the boston band through NOPCO. We were fitted on

Monday and will get it this coming monday. I am a mess. Can't stop

talking about it. I know it will be worse for than Zev but I am so

anxious. I would love to hear stories of others who have gone through

this. How did you handle difficult nights? what if he just cries

with it on? What do you do if people stare? Do you ever get to a

point where your out with your child and you just don't think of it.

I know I am doing the best thing for him but I can't help feeling this

way and am very embarrassed. ....

missy

[Guest guest]

Leila,Thank you for your response. I am so happy that I found this group. It is really helpful to talk to others about everything. I just hope he adjusts well and does not have any problems. I will keep everyone update.Thanks again,MissyFrom: missylevin7

<missylevin7>Subject: New to the groupPlagiocephalyDate: Thursday, February 19, 2009, 7:57 AM

Hi,

My name is Missy. My son is Zev. He is almost 9 months old. He was

born with a lot of bruising on his head and was very coned. He also

had torticollis. My pediatrician told me to do stretches but Zev was

colicy for about a month and I did not want to hurt him....and I

thought I would do it wrong.....anyway,

around 3 months I noticed his head was flattening. The pediatrician

told me that it would round out so I waited. I was still not

satisfied so I took him to a neurosurgeon who said if it were his kid,

he would not helmet him. We tried repositional therapy for about 3-4

months although at that time he was already sleeping on his belly.

About a month ago I made another appointment with another nuerosurgeon

who also felt that he did not need it. He said it was not that bad.

I said that was not good enough. My husband was really against it.

Finally my father, who is a doctor consulted with someone out of state

who looked at pictures and said he was not going to get better on his

own and that he would benefit from a helmet...... .

We are getting the boston band through NOPCO. We were fitted on

Monday and will get it this coming monday. I am a mess. Can't stop

talking about it. I know it will be worse for than Zev but I am so

anxious. I would love to hear stories of others who have gone through

this. How did you handle difficult nights? what if he just cries

with it on? What do you do if people stare? Do you ever get to a

point where your out with your child and you just don't think of it.

I know I am doing the best thing for him but I can't help feeling this

way and am very embarrassed. ....

missy

[Guest guest]

WELCOME!!! If you can't stop talking about it then you have come to the right place!

you will find alot of helpful tips to adjusting to the band.

Also, Post pics if you can... We love to see the babies before, during and after the band!

Oh, and you can search thru old messages to find out about where you are going and what otheres experiences were there.

HTH!!!

Jen and Luli - 3 years old

Left tort - Right Plagio - Hanger Band Grad - CA

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

New to the group

Hi,

My name is Missy. My son is Zev. He is almost 9 months old. He was

born with a lot of bruising on his head and was very coned. He also

had torticollis. My pediatrician told me to do stretches but Zev was

colicy for about a month and I did not want to hurt him....and I

thought I would do it wrong.....anyway,

around 3 months I noticed his head was flattening. The pediatrician

told me that it would round out so I waited. I was still not

satisfied so I took him to a neurosurgeon who said if it were his kid,

he would not helmet him. We tried repositional therapy for about 3-4

months although at that time he was already sleeping on his belly.

About a month ago I made another appointment with another nuerosurgeon

who also felt that he did not need it. He said it was not that bad.

I said that was not good enough. My husband was really against it.

Finally my father, who is a doctor consulted with someone out of state

who looked at pictures and said he was not going to get better on his

own and that he would benefit from a helmet.......

We are getting the boston band through NOPCO. We were fitted on

Monday and will get it this coming monday. I am a mess. Can't stop

talking about it. I know it will be worse for than Zev but I am so

anxious. I would love to hear stories of others who have gone through

this. How did you handle difficult nights? what if he just cries

with it on? What do you do if people stare? Do you ever get to a

point where your out with your child and you just don't think of it.

I know I am doing the best thing for him but I can't help feeling this

way and am very embarrassed.....

missy

Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

The fear and anticipation of what is to come is soooo much worse than when it actually happens. Most kids don't mind the helmet from day one. Some are fussy for the first little bit but adjust no problem within the first week or so.. Very few hate it. A lot has to do with how the parents feel. Be excited about the " silly hat " as we call it and you kid will be positive too. It's pretty much nothing more than a bit of a pain on our end for a few months.

Going out in public I have yet to have a negative experience. Some people question though most that comment have gone through similar experiences or know someone who did and just want to offer encouragement. Some stare, but it's out of curiosity more than anything else. The only odd conversations I've gotten into is with people that have plagio, know someone with it or decided against treating their child and are not happy about it. They offer encouragement, but in a very different and sometimes uncomfortable way.

Elaine (twin A), plagio & tort, 2nd helmet since 1/5/09

On Thu, Feb 19, 2009 at 9:25 PM, Jen <JenandLuli@...> wrote:

WELCOME!!! If you can't stop talking about it then you have come to the right place!you will find alot of helpful tips to adjusting to the band.Also, Post pics if you can... We love to see the babies before, during and after the band!

Oh, and you can search thru old messages to find out about where you are going and what otheres experiences were there.HTH!!!

Jen and Luli - 3 years oldLeft tort - Right Plagio - Hanger Band Grad - CAhttp://www.babiesonline.com/babies/j/jens5th/

New to the group

Hi,My name is Missy. My son is Zev. He is almost 9 months old. He wasborn with a lot of bruising on his head and was very coned. He alsohad torticollis. My pediatrician told me to do stretches but Zev was

colicy for about a month and I did not want to hurt him....and Ithought I would do it wrong.....anyway,around 3 months I noticed his head was flattening. The pediatriciantold me that it would round out so I waited. I was still not

satisfied so I took him to a neurosurgeon who said if it were his kid,he would not helmet him. We tried repositional therapy for about 3-4months although at that time he was already sleeping on his belly. About a month ago I made another appointment with another nuerosurgeon

who also felt that he did not need it. He said it was not that bad. I said that was not good enough. My husband was really against it. Finally my father, who is a doctor consulted with someone out of statewho looked at pictures and said he was not going to get better on his

own and that he would benefit from a helmet.......We are getting the boston band through NOPCO. We were fitted onMonday and will get it this coming monday. I am a mess. Can't stoptalking about it. I know it will be worse for than Zev but I am so

anxious. I would love to hear stories of others who have gone throughthis. How did you handle difficult nights? what if he just crieswith it on? What do you do if people stare? Do you ever get to apoint where your out with your child and you just don't think of it.

I know I am doing the best thing for him but I can't help feeling thisway and am very embarrassed.....missy

Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

Ok. I just wanted to clarify what I said about waiting. My ped was against it as is pretty much my husband and mother. I don't care. But I did some research and I called childrens when Octavian was 4 months and was told to wait till 6. We then had the fitting and waited 2 more weeks for the helmet. Now we have it. I mean you definitely have to go with your instinct and I didn't want to suggest that you wait if its driving you crazy. From: Lina Gabriev Date: Fri, 20 Feb 2009 08:35:34 -0500<Plagiocephaly >Subject: Re: New to the group The fear and anticipation of what is to come is soooo much worse than when it actually happens. Most kids don't mind the helmet from day one. Some are fussy for the first little bit but adjust no problem within the first week or so.. Very few hate it. A lot has to do with how the parents feel. Be excited about the " silly hat " as we call it and you kid will be positive too. It's pretty much nothing more than a bit of a pain on our end for a few months. Going out in public I have yet to have a negative experience. Some people question though most that comment have gone through similar experiences or know someone who did and just want to offer encouragement. Some stare, but it's out of curiosity more than anything else. The only odd conversations I've gotten into is with people that have plagio, know someone with it or decided against treating their child and are not happy about it. They offer encouragement, but in a very different and sometimes uncomfortable way. Elaine (twin A), plagio & tort, 2nd helmet since 1/5/09On Thu, Feb 19, 2009 at 9:25 PM, Jen <JenandLuliaol> wrote:WELCOME!!! If you can't stop talking about it then you have come to the right place!you will find alot of helpful tips to adjusting to the band.Also, Post pics if you can... We love to see the babies before, during and after the band! Oh, and you can search thru old messages to find out about where you are going and what otheres experiences were there.HTH!!! Jen and Luli - 3 years oldLeft tort - Right Plagio - Hanger Band Grad - CAhttp://www.babiesonline.com/babies/j/jens5th/ New to the groupHi,My name is Missy. My son is Zev. He is almost 9 months old. He wasborn with a lot of bruising on his head and was very coned. He alsohad torticollis. My pediatrician told me to do stretches but Zev was colicy for about a month and I did not want to hurt him....and Ithought I would do it wrong.....anyway,around 3 months I noticed his head was flattening. The pediatriciantold me that it would round out so I waited. I was still not satisfied so I took him to a neurosurgeon who said if it were his kid,he would not helmet him. We tried repositional therapy for about 3-4months although at that time he was already sleeping on his belly. About a month ago I made another appointment with another nuerosurgeon who also felt that he did not need it. He said it was not that bad. I said that was not good enough. My husband was really against it. Finally my father, who is a doctor consulted with someone out of statewho looked at pictures and said he was not going to get better on his own and that he would benefit from a helmet.......We are getting the boston band through NOPCO. We were fitted onMonday and will get it this coming monday. I am a mess. Can't stoptalking about it. I know it will be worse for than Zev but I am so anxious. I would love to hear stories of others who have gone throughthis. How did you handle difficult nights? what if he just crieswith it on? What do you do if people stare? Do you ever get to apoint where your out with your child and you just don't think of it. I know I am doing the best thing for him but I can't help feeling thisway and am very embarrassed.....missy Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

Hi Missy,

My son just graduated from the Starband- he is 16 months. He was

banded at 10 months. To answer your questions- especially with an

older baby (meaning older than 4-6 months) - I think attitude is

everything. With my son- we always called it his " big boy hat " and

acted like it was no big deal. We were lucky in the fact that he

took to the helmet right away and had no problems sleeping. I think

older babies have a better time cause they can make themselves

comfortable with the band by moving around. As far as people

staring and making comments- yes people do-but if you decorate it

and put his name on the band with stickers- it kind of breaks the

ice if people want to ask questions.

" Wow Zach that is quite a helmet you got there " -or " is that a

football helmet? " I would just say Yes it sure has saved alot of

trips to the ER with him trying to walk..lol- and is helping his

head to shape properly. " If they wanted to talk further it made it

easier to conversate. And if people stared- Zach would just smile

really big at them- and then they smile back. The babies do not

know any difference- we are the ones who have to learn to cope

I was the one against the band to begin with- the dr, my husband,

and my family all said we should do it. I admit I felt like people

were overreacting- but now I am so glad we did it.

I think it took a couple of weeks for me to not really pay attention

to it- it became part of him- we made sure he wore it the 23/7

because as him being a little older we didn't want to take any

chances.

You can see his pics in the plagio babies V-Z.

I hope this helps...and you have come to the right place- there are

alot of wonderful knowlegable people here.

Kristy

Zach

Starband Grad

16 months old

http://www.rkzrogers.blogspot.com

>

> WELCOME!!!? If you can't stop talking about it then you have come

to the right place!

> you will find alot?of helpful tips to adjusting to the band.

> Also, Post pics if you can... We love to see the babies before,

during and after the band!

> Oh, and you can search thru old messages to find out about where

you are going and what otheres experiences were there.

> HTH!!!

>

>

>

> ?Jen and Luli - 3 years old

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

>

> New to the group

>

>

>

>

>

>

> Hi,

> My name is Missy. My son is Zev. He is almost 9 months old. He was

> born with a lot of bruising on his head and was very coned. He also

> had torticollis. My pediatrician told me to do stretches but Zev

was

> colicy for about a month and I did not want to hurt him....and I

> thought I would do it wrong.....anyway,

> around 3 months I noticed his head was flattening. The pediatrician

> told me that it would round out so I waited. I was still not

> satisfied so I took him to a neurosurgeon who said if it were his

kid,

> he would not helmet him. We tried repositional therapy for about 3-

4

> months although at that time he was already sleeping on his belly.

> About a month ago I made another appointment with another

nuerosurgeon

> who also felt that he did not need it. He said it was not that

bad.

> I said that was not good enough. My husband was really against it.

> Finally my father, who is a doctor consulted with someone out of

state

> who looked at pictures and said he was not going to get better on

his

> own and that he would benefit from a helmet.......

> We are getting the boston band through NOPCO. We were fitted on

> Monday and will get it this coming monday. I am a mess. Can't stop

> talking about it. I know it will be worse for than Zev but I am so

> anxious. I would love to hear stories of others who have gone

through

> this. How did you handle difficult nights? what if he just cries

> with it on? What do you do if people stare? Do you ever get to a

> point where your out with your child and you just don't think of

it.

> I know I am doing the best thing for him but I can't help feeling

this

> way and am very embarrassed.....

> missy

>

[Guest guest]

Beth,

The disease is much worse than the side effects of the drugs. The

recommendation these days is early, aggressive treatment, to prevent

joint erosions, which are permanent. If you do indeed have RA, DMARD's

(Disease Modifying Anti-Rheumatic Drugs) will be necessary. The drugs

used today are far superior to the ones that used to be available, so

you don't have to wind up crippled. Just follow your rheumatologist's

advice about what to take. The manufacturers have to list all adverse

side effects that anyone has ever had. You might not have any of the

side effects. And if you do, another med can be tried.

I am on Enbrel, which keeps my RA under control wonderfully well, with

no adverse side effects. It might take a while for your rheumy to find

the right cocktail for you.

Good luck, and keep us updated on your progress.

Sue

On Mar 6, 2009, at 7:39 PM, marybethvogt wrote:

>

> Hello All, I have recently been diagnosed with early-stage RA (no

> " bony

> erosions " yet, just inflammation, pain & loss of strength in my

> hands/wrists. ) I am currently taking a 3-week course of prednisone to

> reduce the inflammation. It is helping, but of course is not a

> long-term option. I have been reading about the drugs used to treat

> RA

> and am revolted by some of the side effects of these drugs which I

> probably will be expected to take for the rest of my life (I am

> 42). I

> have told my doctor that I am not at all keen on taking any drugs. I

> dislike taking ibuprofen! Have any of you found a way to manage

> without

> drugs? Of course, I am afraid that my bones/joints will deteriorate

> without drugs. I am between a rock and a hard place, as I'm sure

> all of

> you were and are. Thank you in advance for your advice.

>

> Beth Vogt (San Diego, CA)

>

[Guest guest]

Hi Beth,

Welcome to this group, it is full of wonderfull, informative people. I was 24

when I was diagnosed and I was put on remicaide and methtrexate...a pretty

aggressive way right off the bat. I have been fortunate to have had very little

side effects from medications. It is something that you will have to figure out

w/ your rheuumy. It may take a few trial and errors to get the right medication

reginme for you. What works for someone else, may not work for you. Discuss

your worries w/ your rheummy. Sometimes, the benefits outway the side effects.

Don't be afraid to ask questions. Best of luck to you.

>

>

> Hello All, I have recently been diagnosed with early-stage RA (no " bony

> erosions " yet, just inflammation, pain & loss of strength in my

> hands/wrists. ) I am currently taking a 3-week course of prednisone to

> reduce the inflammation. It is helping, but of course is not a

> long-term option. I have been reading about the drugs used to treat RA

> and am revolted by some of the side effects of these drugs which I

> probably will be expected to take for the rest of my life (I am 42). I

> have told my doctor that I am not at all keen on taking any drugs. I

> dislike taking ibuprofen! Have any of you found a way to manage without

> drugs? Of course, I am afraid that my bones/joints will deteriorate

> without drugs. I am between a rock and a hard place, as I'm sure all of

> you were and are. Thank you in advance for your advice.

>

> Beth Vogt (San Diego, CA)

>

[Guest guest]

Good morning Beth,

      My name is and I live in Virginia. I'm 31 and have had RA for

almost 10 years now. (diagnosed at age 22 while I was in college) Due to the

severe onset of my RA, I was put on methotrexate 3 weeks after I was diagnosed.

I also took a high dose of prednisone to get my symptoms under control in the

beginning. Remember, the side effects are pretty rare -- they should still be

taken seriously, but remember that they are rare. When I was diagnosed, the only

biologics that were available were Enbrel (a shot) and Remicade (an IV). No one

knew the long term benefits or side effects (this was 1999) of these drugs. It

was a gamble to try them, but I was out of other options. I have been taking

Remicade (500mg every 6 weeks) for 9.5 years without a single side effect. I

also take ibuprofen, methotrexate, folic acid and flexerill. Before RA, I had

never had even a minor health problem. I didn't want to take prescriptions for

the rest of my life

either (who would) but I have grown to accept it. Some people have found

symptomatic release through natural methods, but those attempts do not stop the

progression of RA. Give yourself some time to learn to accept your diagnosis.

You'll find a great group of people here. They have helped me immensely.

Take care,

Steph in Virginia

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hello All, I have

recently been diagnosed with early-stage RA (no " bony erosions " yet, just

inflammation, pain & loss of strength in my hands/wrists. ) I am currently

taking a 3-week course of prednisone to reduce the inflammation. It is helping,

but of course is not a long-term option. I have been reading about the drugs

used to treat RA and am revolted by some of the side effects of these drugs

which I probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I dislike

taking ibuprofen! Have any of you found a way to manage without drugs? Of

course, I am afraid that my bones/joints will deteriorate without drugs. I am

between a rock and a hard place, as I'm sure all of you were and are. Thank you

in advance for your advice.

Beth Vogt (San Diego, CA)

[Guest guest]

Welcome, Beth.

The effects of RA itself are far more likely to be harmful than

possible side effects of the drugs used to treat it.

Early and aggressive treatment can prevent permanent damage from

occurring. Not only can delay in treatment result in damage, it can

allow the disease to become more aggressive in nature and harder to

manage.

Not an MD

On Fri, Mar 6, 2009 at 6:39 PM, marybethvogt <mbvogt1@...> wrote:

>

> Hello All, I have recently been diagnosed with early-stage RA (no " bony

> erosions " yet, just inflammation, pain & loss of strength in my

> hands/wrists. ) I am currently taking a 3-week course of prednisone to

> reduce the inflammation. It is helping, but of course is not a

> long-term option. I have been reading about the drugs used to treat RA

> and am revolted by some of the side effects of these drugs which I

> probably will be expected to take for the rest of my life (I am 42). I

> have told my doctor that I am not at all keen on taking any drugs. I

> dislike taking ibuprofen! Have any of you found a way to manage without

> drugs? Of course, I am afraid that my bones/joints will deteriorate

> without drugs. I am between a rock and a hard place, as I'm sure all of

> you were and are. Thank you in advance for your advice.

>

> Beth Vogt (San Diego, CA)

[Guest guest]

Hi Beth,

I was the same as you.  I did not have bony erosions just pain and inflammation

when first diagnosed, which was about two years ago.  I am 45 now.  I went on an

elimination diet when I was first diagnosed which took away all the pain in

about a week!  I was very happy.  But I went to see a rheumatologist who put me

on plaquenil, ran a lot of tests and said come back in 3 months.  I really

struggled with the thought of being on meds forever too.  After three months of

being on plaquenil I was ready to tell the rheumatologist I wanted to go off

from it.  Especially since my symptoms had not returned.  But everything I've

read says the DMARDS stop the progression.  And since then I've had a few flares

which make me want to stay on the meds or any other med to stop this

from getting any worse or interfering with what I want to do any more.  I am a

massage therapist and a physical therapist assistant, I'm a single mom of two

wonderful teenagers, 

I need to keep working! 

So anyway, I think diet and other alternatives (I get acupuncture regularly) are

wonderful, but I also opt to take the meds because I don't want it to get

worse. 

Hope this helps,

(in Upstate New York)

________________________________

From: marybethvogt <mbvogt1@...>

@...

Sent: Friday, March 6, 2009 7:39:14 PM

Subject: [ ] New to the group

Hello All, I have recently been diagnosed with early-stage RA (no " bony

erosions " yet, just inflammation, pain & loss of strength in my

hands/wrists. ) I am currently taking a 3-week course of prednisone to

reduce the inflammation. It is helping, but of course is not a

long-term option. I have been reading about the drugs used to treat RA

and am revolted by some of the side effects of these drugs which I

probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I

dislike taking ibuprofen! Have any of you found a way to manage without

drugs? Of course, I am afraid that my bones/joints will deteriorate

without drugs. I am between a rock and a hard place, as I'm sure all of

you were and are.. Thank you in advance for your advice.

Beth Vogt (San Diego, CA)

[Guest guest]

Hi shelly iim in upstate new york too. May i ask what diet you went on

Jolene

In a message dated 3/8/2009 9:26:40 A.M. Eastern Daylight Time,

skaye81@... writes:

Hi Beth,

I was the same as you. I did not have bony erosions just pain and

inflammation when first diagnosed, which was about two years ago. I am 45 now.

I

went on an elimination diet when I was first diagnosed which took away all the

pain in about a week! I was very happy. But I went to see a rheumatologist

who put me on plaquenil, ran a lot of tests and said come back in 3 months. I

really struggled with the thought of being on meds forever too. After three

months of being on plaquenil I was ready to tell the rheumatologist I wanted

to go off from it. Especially since my symptoms had not returned. But

everything I've read says the DMARDS stop the progression. And since then I've

had a few flares which make me want to stay on the meds or any other med to

stop this from getting any worse or interfering with what I want to do any

more. I am a massage therapist and a physical therapist assistant, I'm a

single

mom of two wonderful teenagers,

I need to keep working!

So anyway, I think diet and other alternatives (I get acupuncture regularly)

are wonderful, but I also opt to take the meds because I don't want it to

get worse.

Hope this helps,

(in Upstate New York)

________________________________

From: marybethvogt <_mbvogt1@..._ (mailto:mbvogt1@...) >

_ @groRA-SUPPO_ (mailto: @...)

Sent: Friday, March 6, 2009 7:39:14 PM

Subject: [ ] New to the group

Hello All, I have recently been diagnosed with early-stage RA (no " bony

erosions " yet, just inflammation, pain & loss of strength in my

hands/wrists. ) I am currently taking a 3-week course of prednisone to

reduce the inflammation. It is helping, but of course is not a

long-term option. I have been reading about the drugs used to treat RA

and am revolted by some of the side effects of these drugs which I

probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I

dislike taking ibuprofen! Have any of you found a way to manage without

drugs? Of course, I am afraid that my bones/joints will deteriorate

without drugs. I am between a rock and a hard place, as I'm sure all of

you were and are.. Thank you in advance for your advice.

Beth Vogt (San Diego, CA)

[Non-text portions of this message have been removed]

**************Check all of your email inboxes from anywhere on the web. Try

the new Email Toolbar now!

(http://toolbar.aol.com/mail/download.html?ncid=txtlnkusdown00000027)

[Guest guest]

Hi ,

I found in July of last year that I had arthritis. In December my doctor

put me on Diclofenac sod. The pain will never be completely gone. But

without the medication my pain would much worst. It was right before I

turned 45 years old that I started having sharp pains in my right arm. Then

I started having pains in my left arm. When I went to a specialist he ran an

ex-ray and found that I had arthritis. Sometimes I will have bad flares

areas. It is not just in my arms anymore. Sometimes my knee will make a

cracking sound. It is nothing to have pains in my arms, knees, legs and

feet. But I know that without having something for the pain it would be much

worst.

From: [mailto: ] On

Behalf Of Bloomquist

Sent: Sunday, March 08, 2009 9:26 AM

Subject: Re: [ ] New to the group

Hi Beth,

I was the same as you. I did not have bony erosions just pain and

inflammation when first diagnosed, which was about two years ago. I am 45

now. I went on an elimination diet when I was first diagnosed which took

away all the pain in about a week! I was very happy. But I went to see a

rheumatologist who put me on plaquenil, ran a lot of tests and said come

back in 3 months. I really struggled with the thought of being on meds

forever too. After three months of being on plaquenil I was ready to tell

the rheumatologist I wanted to go off from it. Especially since my symptoms

had not returned. But everything I've read says the DMARDS stop the

progression. And since then I've had a few flares which make me want to

stay on the meds or any other med to stop this from getting any worse or

interfering with what I want to do any more. I am a massage therapist and a

physical therapist assistant, I'm a single mom of two wonderful teenagers,

I need to keep working!

So anyway, I think diet and other alternatives (I get acupuncture regularly)

are wonderful, but I also opt to take the meds because I don't want it to

get worse.

Hope this helps,

(in Upstate New York)

________________________________

From: marybethvogt <mbvogt1@... <mailto:mbvogt1%40san.rr.com> >

@... <mailto: %40groups..com>

Sent: Friday, March 6, 2009 7:39:14 PM

Subject: [ ] New to the group

Hello All, I have recently been diagnosed with early-stage RA (no " bony

erosions " yet, just inflammation, pain & loss of strength in my

hands/wrists. ) I am currently taking a 3-week course of prednisone to

reduce the inflammation. It is helping, but of course is not a

long-term option. I have been reading about the drugs used to treat RA

and am revolted by some of the side effects of these drugs which I

probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I

dislike taking ibuprofen! Have any of you found a way to manage without

drugs? Of course, I am afraid that my bones/joints will deteriorate

without drugs. I am between a rock and a hard place, as I'm sure all of

you were and are.. Thank you in advance for your advice.

Beth Vogt (San Diego, CA)

[Guest guest]

Hi Jolene,

The diet was an elimination diet that i read about in " Healing with Whole Foods "

by Pitchford.  I also went to a naturopath shortly after that who suggested

the same one.  Basically it was no meat (fish is okay), no dairy, no wheat, no

sugar, no alcohol, no chocolate, and no nightshade vegetables (potatoes,

tomatoes, eggplants or peppers - that was tough).  The naturopath said I should

really try to eat this way the rest of my life but I have not been able to stick

to it really.  But if I do get inflammed I try to go back on it for a few days. 

Especially cutting out wheat and sugar seem to make a big difference at times.

Where in Upstate are you?  I am south of Rochester,

________________________________

From: " Jolenefive@... " <Jolenefive@...>

Sent: Sunday, March 8, 2009 1:43:13 PM

Subject: Re: [ ] New to the group

Hi shelly iim in upstate new york too. May i ask what diet you went on

Jolene

In a message dated 3/8/2009 9:26:40 A.M. Eastern Daylight Time,

skaye81 (DOT) com writes:

Hi Beth,

I was the same as you. I did not have bony erosions just pain and

inflammation when first diagnosed, which was about two years ago. I am 45 now. I

went on an elimination diet when I was first diagnosed which took away all the

pain in about a week! I was very happy. But I went to see a rheumatologist

who put me on plaquenil, ran a lot of tests and said come back in 3 months. I

really struggled with the thought of being on meds forever too. After three

months of being on plaquenil I was ready to tell the rheumatologist I wanted

to go off from it. Especially since my symptoms had not returned. But

everything I've read says the DMARDS stop the progression. And since then I've

had a few flares which make me want to stay on the meds or any other med to

stop this from getting any worse or interfering with what I want to do any

more. I am a massage therapist and a physical therapist assistant, I'm a single

mom of two wonderful teenagers,

I need to keep working!

So anyway, I think diet and other alternatives (I get acupuncture regularly)

are wonderful, but I also opt to take the meds because I don't want it to

get worse.

Hope this helps,

(in Upstate New York)

____________ _________ _________ __

From: marybethvogt <_mbvogt1san (DOT) mbvogt_ (mailto:mbvogt1san (DOT) rr.com) >

_ @ groRA- SUPPO_ (mailto: @gro ups..com)

Sent: Friday, March 6, 2009 7:39:14 PM

Subject: [ ] New to the group

Hello All, I have recently been diagnosed with early-stage RA (no " bony

erosions " yet, just inflammation, pain & loss of strength in my

hands/wrists. ) I am currently taking a 3-week course of prednisone to

reduce the inflammation. It is helping, but of course is not a

long-term option. I have been reading about the drugs used to treat RA

and am revolted by some of the side effects of these drugs which I

probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I

dislike taking ibuprofen! Have any of you found a way to manage without

drugs? Of course, I am afraid that my bones/joints will deteriorate

without drugs. I am between a rock and a hard place, as I'm sure all of

you were and are.. Thank you in advance for your advice.

Beth Vogt (San Diego, CA)

[Guest guest]

Thanks i have heard the same although i wonder why no wheat, Yes sugar is a

big one for me

i have to cut it out again. Im in buffalo ny.

Jolene

In a message dated 3/9/2009 9:32:51 P.M. Eastern Daylight Time,

skaye81@... writes:

Hi Jolene,

The diet was an elimination diet that i read about in " Healing with Whole

Foods " by Pitchford. I also went to a naturopath shortly after that who

suggested the same one. Basically it was no meat (fish is okay), no dairy, no

wheat, no sugar, no alcohol, no chocolate, and no nightshade vegetables

(potatoes, tomatoes, eggplants or peppers - that was tough). The naturopath

said

I should really try to eat this way the rest of my life but I have not been

able to stick to it really. But if I do get inflammed I try to go back on it

for a few days. Especially cutting out wheat and sugar seem to make a big

difference at times.

Where in Upstate are you? I am south of Rochester,

________________________________

From: " _Jolenefive@..._ (mailto:Jolenefive@...) "

<_Jolenefive@..._ (mailto:Jolenefive@...) >

_ @groRA-SUPP_ (mailto: )

Sent: Sunday, March 8, 2009 1:43:13 PM

Subject: Re: [ ] New to the group

Hi shelly iim in upstate new york too. May i ask what diet you went on

Jolene

In a message dated 3/8/2009 9:26:40 A.M. Eastern Daylight Time,

skaye81 (DOT) com writes:

Hi Beth,

I was the same as you. I did not have bony erosions just pain and

inflammation when first diagnosed, which was about two years ago. I am 45

now. I

went on an elimination diet when I was first diagnosed which took away all

the

pain in about a week! I was very happy. But I went to see a rheumatologist

who put me on plaquenil, ran a lot of tests and said come back in 3 months.

I

really struggled with the thought of being on meds forever too. After three

months of being on plaquenil I was ready to tell the rheumatologist I wanted

to go off from it. Especially since my symptoms had not returned. But

everything I've read says the DMARDS stop the progression. And since then

I've

had a few flares which make me want to stay on the meds or any other med to

stop this from getting any worse or interfering with what I want to do any

more. I am a massage therapist and a physical therapist assistant, I'm a

single

mom of two wonderful teenagers,

I need to keep working!

So anyway, I think diet and other alternatives (I get acupuncture regularly)

are wonderful, but I also opt to take the meds because I don't want it to

get worse.

Hope this helps,

(in Upstate New York)

____________ _________ _________ __

From: marybethvogt <_mbvogt1san (DOT) mbvogt_ (mailto:mbvogt1@_mbvogt1san (DOT) >

_ @ groRA- SUPPO_ (mailto: @_ @ ya

Sent: Friday, March 6, 2009 7:39:14 PM

Subject: [ ] New to the group

Hello All, I have recently been diagnosed with early-stage RA (no " bony

erosions " yet, just inflammation, pain & loss of strength in my

hands/wrists. ) I am currently taking a 3-week course of prednisone to

reduce the inflammation. It is helping, but of course is not a

long-term option. I have been reading about the drugs used to treat RA

and am revolted by some of the side effects of these drugs which I

probably will be expected to take for the rest of my life (I am 42). I

have told my doctor that I am not at all keen on taking any drugs. I

dislike taking ibuprofen! Have any of you found a way to manage without

drugs? Of course, I am afraid that my bones/joints will deteriorate

without drugs. I am between a rock and a hard place, as I'm sure all of

you were and are.. Thank you in advance for your advice.

Beth Vogt (San Diego, CA)

[Non-text portions of this message have been removed]

************ **Check all of your email inboxes from anywhere on the web. Try

the new Email Toolbar now!

(_http://toolbar._ (http://toolbar./) aol.com/mail/ download. html?ncid=

txtlnkusdown0000 0027)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100126575x1219671244x1201345076/aol?redir=http:%2\

F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID

%3D62%26bcd%3DfebemailfooterNO62)