Newbie

[Guest guest]

Hi ,

I think, as 's mom, that you did the right thing in pushing to see a specialist. If he is only 6 months old, It sounds to me like a band could help his eyes and ears. My son is being banded soon and he is 6.5 months old. His Plagio is mild and his ears are slightly misaligned. Unfortunately, because Ian is not banded yet, I can't answer most of your questions. I did want to ask though, other than rolling over, is he slow in any other area? My understanding, now that babies are placed on their backs and have no reason to roll over, that it takes some babies up to 8 months to roll over so might not be slow at all. The doctor I saw on Monday, said Plagio did not affect a babies development.

Anyway, wish I could've answered more but I know you'll get a ton of responses. Good luck!!!

Melisa

Anaheim, CA

Ian & Isabelle 6.5 months old

Newbie

Hi,I am new to the group. It was a blessing to find such an active, informative bunch of people. My son, , has plagio and had torts as well. PT seems to have handled the torts and repo has really helped with the plagio. So much so, that he has gone from moderate/severe to mild. The PT does not think I should be reffered to a specialist, as she thinks he will not be banded. I still wanted that professional opinion and pushed my doctor for a referral (it did not take much pushing, she understood, as a mom I needed to make sure I exhausted all avenues). 's left eye still remains smaller than the right and his ears are slightly misaligned (nothing like before). The hospital called with an appointment for Jan. 23. I am now worried they are going to be mad that I am wasting their time and brush me off. I still have so many questions........how long do I continue repositioning............can agressive repo affect the other side..............if he is not banded will his eye ever correct itself...........he is slow developmentally i.e. rolling over, is this anyway related to the plagio........... I guess I just want to talk to someone that deals in this area and get some answers. If any of you have any suggestion PLEASE let me know. was 6 months old on Jan. 2. He is the light of my life and I just want to make sure I am doing everything possible. Thanks, For more plagio info

[Guest guest]

,

Welcome to the group! I was so excited to read your post --

congratulations on such good progress with your repo efforts with

! I am especially interested in the fact that you were able to

resolve some ear misalignment with repo. So far, I have only read

from a couple of people who have used repo and seen some ear

misalignment correction. Their babies were quite young when they

started repo. At what age did you start repoing ? If you have

any photos which show his rounding progress, we would love to see them

in the photos section!

I think you are doing the exact right thing by persuing your

consultation, even though 's plagio is judged mild. In our case,

we ended up treating our daughter Remy with aggressive repo only, but

we certainly kept our options open! We set a repo deadline of 8

months, and before that deadline, started working the issues of

slogging through the appts. and referrals to get a helmet. That way,

we would move Remy right into a helmet when we reached our repo

deadline without a gap in treatment. We ended up cancelling the day

before helmet casting after we took another set of progress photos; my

husband and I were so pleased with Remy's rounding, that we decided to

forego the helmet. Remy's progress photos are in the PHOTOS section,

BEFORE AND AFTER folder, REPOSITIONING folder (she had no facial,

forehead, or ear asymmetries, though.)

In your case, since there are slight, lingering ear and facial

asymmetries, you should definitely go ahead to your consultation, etc,

and advance through the steps to pursue the band. You can always

change your mind if you realize additional benefits from aggressive

repo between now and then. I would also keep on repo'ing until you

get into a band or quit repo altogether. Although extremely rare, I

have heard of one parent who felt that aggressive repo had started to

flatten the non-flat side, so be vigilant in varying where you rest

's head on the non-flat side.

There is one study that shows some developmental issues tenuously

connected to plagiocephaly. That study and more can be found in the

LINKS section of the group, PLAGIOCEPHALY STUDIES AND RESEARCH folder.

Regarding milestones, I think repo affected Remy's comfort level with

some physical achievements since we had her in her walker and dangling

in her front carrier so much of the time... she stood very early,

walked at nine months, but HATED sitting. She refused to sit well

until she was 9 months old!

Please keep us posted on how repo is going, and how 's appt. goes

as well!

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " luvs2laf38 " <luvs2laf38@y...>

wrote:

> Hi,

> I am new to the group. It was a blessing to find such an active,

> informative bunch of people. My son, , has plagio and had

> torts as well. PT seems to have handled the torts and repo has

> really helped with the plagio. So much so, that he has gone from

> moderate/severe to mild. The PT does not think I should be reffered

> to a specialist, as she thinks he will not be banded. I still

> wanted that professional opinion and pushed my doctor for a referral

> (it did not take much pushing, she understood, as a mom I needed to

> make sure I exhausted all avenues). 's left eye still remains

> smaller than the right and his ears are slightly misaligned (nothing

> like before). The hospital called with an appointment for Jan. 23.

> I am now worried they are going to be mad that I am wasting their

> time and brush me off. I still have so many questions........how

> long do I continue repositioning............can agressive repo

> affect the other side..............if he is not banded will his eye

> ever correct itself...........he is slow developmentally i.e.

> rolling over, is this anyway related to the plagio........... I

> guess I just want to talk to someone that deals in this area and get

> some answers. If any of you have any suggestion PLEASE let me know.

> was 6 months old on Jan. 2. He is the light of my life and I

> just want to make sure I am doing everything possible.

> Thanks,

>

[Guest guest]

Hi and welcome to the group.

Congrats on the repo success, especially with the tort. We had such

a hard time with our son - the tort interferred too much with the

repo. He was banded, with good results. His eye did correct with

banding(the left one was also smaller). His eye was smaller because

his forehead bossed over his left eye. I'm not sure if repo will

correct this. Hopefully some can answer that for you.

As far as the slow development - all kids develop at their own pace

so it's hard to tell. My son was a little on the slow side with

rolling over and crawling, but our PT said it had more to do with

muscle strength. Because of the tort our son hated tummy time, so he

wasn't strengthening his muscles. PT helped with this, but he didn't

start until 7months of age, so you still have time.

Don't feel bad about wanting your son seen by a specialist. They can

answer all you questions, that's what they're there for.

Good luck and let us know how your appointment goes.

mom to Jake 18mo(doc band grad 2003)

and Tyler 4yrs.

--- In Plagiocephaly , " luvs2laf38 " <luvs2laf38@y...>

wrote:

> Hi,

> I am new to the group. It was a blessing to find such an active,

> informative bunch of people. My son, , has plagio and had

> torts as well. PT seems to have handled the torts and repo has

> really helped with the plagio. So much so, that he has gone from

> moderate/severe to mild. The PT does not think I should be

reffered

> to a specialist, as she thinks he will not be banded. I still

> wanted that professional opinion and pushed my doctor for a

referral

> (it did not take much pushing, she understood, as a mom I needed to

> make sure I exhausted all avenues). 's left eye still remains

> smaller than the right and his ears are slightly misaligned

(nothing

> like before). The hospital called with an appointment for Jan.

23.

> I am now worried they are going to be mad that I am wasting their

> time and brush me off. I still have so many questions........how

> long do I continue repositioning............can agressive repo

> affect the other side..............if he is not banded will his eye

> ever correct itself...........he is slow developmentally i.e.

> rolling over, is this anyway related to the plagio........... I

> guess I just want to talk to someone that deals in this area and

get

> some answers. If any of you have any suggestion PLEASE let me know.

> was 6 months old on Jan. 2. He is the light of my life and I

> just want to make sure I am doing everything possible.

> Thanks,

>

[Guest guest]

I took my dd to see a ped. neurosurgeon today for what I thought may

be mild plagio. I have an older child that needed a helmet yrs ago

and he was REALLY flat so I am a bit jumpy about the deal. I made

the appt weeks ago when she was really flat and its seems to be

getting better. I fretted all last week thinking I was going to go

into this appt and totally waste this docs time. I was afraid he

would think I was an over reacting wack job. Well, I saw the doc

and she has moderate plagio with her ears being out of alignment and

her forehead bulging. My dd is only 16 wks old so we are going to

try to reshape with more tummy time. I guess what I am trying to say

is listen to that little voice inside that is urging you to see the

doc. Dont back down and dont feel like you are wasting anyones time!

Good luck!

S.

--- In Plagiocephaly , " luvs2laf38 " <luvs2laf38@y...>

wrote:

> Hi,

> I am new to the group. It was a blessing to find such an active,

> informative bunch of people. My son, , has plagio and had

> torts as well. PT seems to have handled the torts and repo has

> really helped with the plagio. So much so, that he has gone from

> moderate/severe to mild. The PT does not think I should be

reffered

> to a specialist, as she thinks he will not be banded. I still

> wanted that professional opinion and pushed my doctor for a

referral

> (it did not take much pushing, she understood, as a mom I needed

to

> make sure I exhausted all avenues). 's left eye still remains

> smaller than the right and his ears are slightly misaligned

(nothing

> like before). The hospital called with an appointment for Jan.

23.

> I am now worried they are going to be mad that I am wasting their

> time and brush me off. I still have so many questions........how

> long do I continue repositioning............can agressive repo

> affect the other side..............if he is not banded will his

eye

> ever correct itself...........he is slow developmentally i.e.

> rolling over, is this anyway related to the plagio........... I

> guess I just want to talk to someone that deals in this area and

get

> some answers. If any of you have any suggestion PLEASE let me

know.

> was 6 months old on Jan. 2. He is the light of my life and

I

> just want to make sure I am doing everything possible.

> Thanks,

>

[Guest guest]

Hi ,

Welcome to the group! I see you've gotten some really good replies

already so I won't repeat them. Please let us know how the appt goes

on the 23rd.

--- In Plagiocephaly , " luvs2laf38 " <luvs2laf38@y...>

wrote:

> Hi,

> I am new to the group. It was a blessing to find such an active,

> informative bunch of people. My son, , has plagio and had

> torts as well. PT seems to have handled the torts and repo has

> really helped with the plagio. So much so, that he has gone from

> moderate/severe to mild. The PT does not think I should be

reffered

> to a specialist, as she thinks he will not be banded. I still

> wanted that professional opinion and pushed my doctor for a

referral

> (it did not take much pushing, she understood, as a mom I needed to

> make sure I exhausted all avenues). 's left eye still remains

> smaller than the right and his ears are slightly misaligned

(nothing

> like before). The hospital called with an appointment for Jan.

23.

> I am now worried they are going to be mad that I am wasting their

> time and brush me off. I still have so many questions........how

> long do I continue repositioning............can agressive repo

> affect the other side..............if he is not banded will his eye

> ever correct itself...........he is slow developmentally i.e.

> rolling over, is this anyway related to the plagio........... I

> guess I just want to talk to someone that deals in this area and

get

> some answers. If any of you have any suggestion PLEASE let me know.

> was 6 months old on Jan. 2. He is the light of my life and I

> just want to make sure I am doing everything possible.

> Thanks,

>

[Guest guest]

Hi -

I totally understand your feelings. My DS is scheduled for an

appointment with a specialist the first week of February. I am using

Repo w/some success. I do think his case may be mild but he does

have very slight ear mis-alignment. However, I have noticed some

correction since I started repo. I did start him at 3.5 months and

he just turned 5 months this week.

You notice how I say " I " started repo. My husband thinks I am over

reacting. He takes care of DS during the day while Im at work. He

says he does try to keep him off his head but Im not sure he is

really convinced its necessary and not sure he is very diligent

during the day. The good news is there has been some rounding, his

ears are practically even at this point. I can still feel some

forehead bossing but you can not see it with your naked eye. He also

has slight bossing on his non-flat side that can be noticed if you

are really looking for it. Im hopeful that I started repo early

enough to prevent any further flatness and it appears we are starting

to round.

Even though things appear to be working, I am still going to keep his

appointment next month. My DH may not even come with me and if not

my Mom has agreed to go. She is very supportive and keeps telling me

Im doing the right thing. She also was the person who originally

pointed it out to me at 2.5 months. She noticed his cheek was a bit

fuller than the other. She said she was keeping an eye on his head

and didn't want to panic me but she thinks we need to be careful with

how its beginning to shape (THANKS MOM).

Good luck with your appointment. You may be told that your child

will be fine and it will round out without helmet/band treatment and

wouldnt' this be a great relief!!

Kat

[Guest guest]

Hi Alinia, Welcome to the group, I hope you enjoy the group. I'm

sorry to hear about your dx, but glad that you have found the group.

I hope to get to know you soon, Tawny

> Hi Everyone. I've just joined the group and would like to introduce

myself. My name is Alinia and I live in Derby, England. I have

suffered from arthritis since aged 28 (I'm now 52). Have been told

for a number of years that it is osteoarthritis but now my doctor is

telling me that I have Rheumetoid. I also have hyperthyroidism, need

to take warfarin because of an inheritary blood disorder, experience

atrial fibrillations on a regular basis and in the past week have

been informed that a antibody screening recently taken suggests that

I have Primary Biliary Cirrhosis. Apart from the above I'm just fine

LOL. I work as a nurse therapist at an acute day hospital but have

been off work for the past 6 weeks following a flare up of my joints -

have pain in both knees and hips as well as shoulder wrists, hands

and heel.There is a possibility that I may now be retired from work

on health grounds - will be seeing the occupational health department

next week. Meanwhile I intend to start developing some new hobbies as

I may very soon have plenty of time on my hands. Trouble is that they

will mostly have to be non-ambulatory since I am in constant pain

when walking and have less energy than a gnat.

> I look forward to being a member of this group and receiving as

well as giving support to all you fine people out there.

> Alinia

>

> -----------------------------------------

> Email provided by http://www.ntlhome.com/

[Guest guest]

Welcome to the group Alinia - I live in Bristol, England!

All the best - Carole

~~~

> Hi Everyone. I've just joined the group and would like to

introduce myself. My name is Alinia and I live in Derby, England. I

have suffered from arthritis since aged 28 (I'm now 52). Have been

told for a number of years that it is osteoarthritis but now my

doctor is telling me that I have Rheumetoid. I also have

hyperthyroidism, need to take warfarin because of an inheritary

blood disorder, experience atrial fibrillations on a regular basis

and in the past week have been informed that a antibody screening

recently taken suggests that I have Primary Biliary Cirrhosis. Apart

from the above I'm just fine LOL. I work as a nurse therapist at an

acute day hospital but have been off work for the past 6 weeks

following a flare up of my joints - have pain in both knees and hips

as well as shoulder wrists, hands and heel.There is a possibility

that I may now be retired from work on health grounds - will be

seeing the occupational health department next week. Meanwhile I

intend to start developing some new hobbies as I may very soon have

plenty of time on my hands. Trouble is that they will mostly have to

be non-ambulatory since I am in constant pain when walking and have

less energy than a gnat.

> I look forward to being a member of this group and receiving as

well as giving support to all you fine people out there.

> Alinia

>

> -----------------------------------------

> Email provided by http://www.ntlhome.com/

[Guest guest]

Thanks For the welcome Tawny.

Alinia

>

> From: " Tawny " <tawnyokc@...>

> Date: 2004/06/12 Sat PM 10:46:26 GMT

>

> Subject: [ ] Re: Newbie

>

>

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

Email provided by http://www.ntlhome.com/

[Guest guest]

> Hi there Carole. Nice to meet you. How many more English people are out there

and where does everyone else come from?

Alinia

> From: " carolegwyther " <gwythermystq@...>

> Date: 2004/06/13 Sun AM 09:23:42 GMT

>

> Subject: [ ] Re: Newbie

>

>

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

Email provided by http://www.ntlhome.com/

[Guest guest]

> Thanks For the welcome Tawny.

> Alinia

>> >

>> > From: " Tawny " <tawnyokc@...>

>> > Date: 2004/06/12 Sat PM 10:46:26 GMT

>> >

>> > Subject: [ ] Re: Newbie

>> >

>> >

>

> -----------------------------------------

> Email provided by http://www.ntlhome.com/

>

>

>

>

[Guest guest]

Welcome, Alinia! Very sorry about all of your diagnoses and that you

aren't feeling well.

Why isn't anyone treating your pain?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Newbie

> Hi Everyone. I've just joined the group and would like to introduce

myself. My name is Alinia and I live in Derby, England. I have suffered

from arthritis since aged 28 (I'm now 52). Have been told for a number

of years that it is osteoarthritis but now my doctor is telling me that

I have Rheumetoid. I also have hyperthyroidism, need to take warfarin

because of an inheritary blood disorder, experience atrial fibrillations

on a regular basis and in the past week have been informed that a

antibody screening recently taken suggests that I have Primary Biliary

Cirrhosis. Apart from the above I'm just fine LOL. I work as a nurse

therapist at an acute day hospital but have been off work for the past 6

weeks following a flare up of my joints - have pain in both knees and

hips as well as shoulder wrists, hands and heel.There is a possibility

that I may now be retired from work on health grounds - will be seeing

the occupational health department next week. Meanwhile I intend to

start developing some new hobbies as I may very soon have plenty of time

on my hands. Trouble is that they will mostly have to be non-ambulatory

since I am in constant pain when walking and have less energy than a

gnat.

> I look forward to being a member of this group and receiving as well

as giving support to all you fine people out there.

> Alinia

[Guest guest]

>

> > Hi there Carole. Nice to meet you. How many more English people

are out there and where does everyone else come from?

************

Nice to meet you too Alinia, I don't really know how many more

English are here to but there must be others!??

I agree, that it's great to have found this site. Personally, I

find it best not to burden my family, with all my woes. To be

honest, I get fed up with my 'illnesses' and myself anyway, so I can

just imagine how others would feel, if I kept on to them about

them.

Mind you, there are some days I feel, as though I should be awarded

a medal, for what I have gone through, (climbed Everest top to

bottom). It is these days, I feel like screaming at people, " you

haven't a clue what its just took out of me, to get through this

day " !!

Hope you enjoy the group, and look forward to your postings:)

Carole

~~~~

]

[Guest guest]

Hi Carole. Your experiences sound very much like my own. Your comment about

climbing mount Everest made me smile because my son often will watch me inch my

way up the stairs and then casually comment that I should plant a flag!

Alinia

>

> From: " carolegwyther " <gwythermystq@...>

> Date: 2004/06/14 Mon AM 06:55:38 GMT

>

> Subject: [ ] Re: Newbie

>

>

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

Email provided by http://www.ntlhome.com/

[Guest guest]

>>>new here.thanks.<<<

You're welcome :-)

[Guest guest]

Welcome !

This is a great group, I for one have found a lot of wonderful people here and

have gotten some great information!

Semalee

[ ] Newbie

Hey, My name is . I was dxd with this thing they call RA. Im

not really sure what to expect I know it sure does hurt alot. Im 43

yrs old , soon to be 44, I live in North Carolina, have a son that is

almost 20yrs old, and have a significant other thats been with me for

25 yrs.I have 4 dogs and 1 cat and live in the country and love

it.Oh, one more thing I also have PD (parkinsons disease). I dont

know how I got so lucky, but I hope this group can help me out in

this trying time....boy am I trying ....lol...Thanks for listening.

[Guest guest]

Welcome ,....I'm sorry to hear your dx's, but glad you found our

awesome group. There are so many wonderful people here, and great

information. We all go through the same thing, and so we understand

what you go through, and your feelings.

I am 41 years old, live in Oklahoma. I hope to get to know you, T

> Hey, My name is . I was dxd with this thing they call RA.

Im

> not really sure what to expect I know it sure does hurt alot. Im 43

> yrs old , soon to be 44, I live in North Carolina, have a son that

is

> almost 20yrs old, and have a significant other thats been with me

for

> 25 yrs.I have 4 dogs and 1 cat and live in the country and love

> it.Oh, one more thing I also have PD (parkinsons disease). I dont

> know how I got so lucky, but I hope this group can help me out in

> this trying time....boy am I trying ....lol...Thanks for listening.

[Guest guest]

Hi ,

Welcome to the group. I am also in North Carolina and have had RA for

almost four years. That it certainly can hurt a lot is an

understatement, LOL. Mine is being controlled very well by Enbrel, so

that I have very little pain now, thank goodness. So there is hope for

a better day.

Do you have a rheumatologist? They are best equipped to deal with RA.

What medications are you on for it? Sometimes it takes a while for a

rheumy to find the right combination of meds that will keep the

inflammation under control.

Where are you in NC? I'm located in son County.

Sue

On Sunday, September 19, 2004, at 03:37 PM, wrote:

> Hey, My name is . I was dxd with this thing they call RA. Im

> not really sure what to expect I know it sure does hurt alot. Im 43

> yrs old , soon to be 44, I live in North Carolina, have a son that is

> almost 20yrs old, and have a significant other thats been with me for

> 25 yrs.I have 4 dogs and 1 cat and live in the country and love

> it.Oh, one more thing I also have PD (parkinsons disease). I dont

> know how I got so lucky, but I hope this group can help me out in

> this trying time....boy am I trying ....lol...Thanks for listening.

[Guest guest]

Welcome to the group! I am sorry about your diagnosis, but this is a

great place to learn and receive support. Are you on medications?

There is a current theory that early, agressive treatment of RA with

DMARDs (disease modifying anti-rheumatic drugs) is the best chance at

avoiding the pain, stiffness and eventual joint erosion that can come

with RA.

I am 34 and in PA, and have had RA for over a year.

Jennie

> Hey, My name is . I was dxd with this thing they call RA.

Im

> not really sure what to expect I know it sure does hurt alot. Im 43

> yrs old , soon to be 44, I live in North Carolina, have a son that

is

> almost 20yrs old, and have a significant other thats been with me

for

> 25 yrs.I have 4 dogs and 1 cat and live in the country and love

> it.Oh, one more thing I also have PD (parkinsons disease). I dont

> know how I got so lucky, but I hope this group can help me out in

> this trying time....boy am I trying ....lol...Thanks for listening.

[Guest guest]

Kathe,

It is completely natural to hate the idea of prescription drugs. But

one thing I will tell you for certain, the RA has the ability to

damage your body much more than mtx (assuming you are like most and

do not experience any harmful side effects - those that do experience

side effects will be taken off and another drug tried). You need to

worry about more than just the joint pain you are experiencing.

Joint destruction is most likely going on if you are not being

treated with a DMARD (disease modifying anti-rheumatic drug). My mom

has had RA for over 20 years and they didn't have DMARDs when she

first got RA. She has almost no joints left in her hands/feet and

severe erosion in wrists/ankles. She has severe disfigurement and

constant pain even with the latest medical treatments available to

her today. Bone on bone pain is very bad and there is no treatment

for that. RA can also cause other severe health problems if it

starts to affect other soft tissues in your body, some very serious

and life threatening ones.

Does your insurance cover the mtx, but just not other treatments? RA

is a progressive disease and it is not likely to get better on it's

own. Eating properly, accupuncture, exercise, etc. are all important

parts of succesfully treating RA, but those things alone are not

effective at stopping or slowing joint destruction. Has your

rheumatologist been taking x-rays to see if you already have joint

erosion?

I'm not trying to scare you with all this. It's important to

understand what you are risking by foregoing treatment with

medication. If you are going to make that choice, it needs to be an

informed one. You can't always tell you are having joint erosion.

For my mom, she got most of the damage in the first 5 years of having

the diease, but the severe disfigurement was only evident years

later. My rheumy promises me I will never face what she has had to

face and I'm holding him to that. My mom had no choice, I do.

I started on mtx when I was officially diagnosed the summer of 2003,

about 9 months after the first symptoms started. I was on prednisone

since before the diagnosis and I'm almost weaned off of it. This

January I added Humira because the mtx was not enough and now I'm

doing fairly well on the combination of mtx and Humira. A lot of RA

patients can take mtx and stay on just that, without needing more

advanced drugs.

Even with medication this can be a difficult disease to cope with.

It's a chronic illness and it's rare that someone goes into remission

without drugs. I don't think any of us can do all the things we

could do before RA, so learning to cope is critical. My biggest

problem is the fatigue, which is mostly exacerbated by being a mother

to a 4 year old. I had to move recently and had nobody to help me, I

thought I was literally going to die. It was in early July and I

just this weekend got my daughters room unpacked. I'm so exhausted

right now for having lifted and unpacked so many boxes.

Having others to talk to that understand what you are going through

can help you make it through this. The best thing about this group

is the incredible amount of research posted here. You can learn a

lot about RA and the current treatments. Being informed is the best

way to fight this disease. There are lots here who can answer your

questions about medical or alternative treatments. I am glad you

found us.

Welcome to the group.

Jennie

--- In , Kathe S Barsotti <kbarsotti@j...>

wrote:

> Hello. I am new to the list. I have had RA for almost two years

now.

> My GP discovered it after a year of unexplained foot and joint

pain, by

> finding the RA factor in a blood test. My rheumatologist agrees.

I am

> experiencing pain in approximately 20 joints, hands and feet,

elbows and

> knees mostly. I am a vegetarian (have been for 20 years) and have

been

> trying to find alternative therapies for my pain. I have been

eating an

> ayurvedic diet, which has helped some. I live in a 40 year old

home

> with mold problems. I am trying to move to a home without a

basement,

> but the process is slow. And now the RA is really starting to

affect my

> quality of life with fatigue in addition to the joint pain. I

homeschool

> my two sons, ages 3 and 10, and help to support our family with dog

> grooming. I just saw a rheumatologist last week and she wants me

to

> start on Methotrexate, 6 tabs a week. She also suggests I go on the

> pill, as the methotrexate causes birth defects. I can't really

afford

> any further alternative therapies, my insurance won't cover them.

I have

> already tried chiropractic, acupressure, and panchukarma (cleansing

diet,

> massage, hot mist bath). I hate the thought of being on

prescription

> drugs for the rest of my life, I hate using the over-the-counter

pain

> relievers I'm using now, even if they aren't really helping so much

> anymore. I could use some input from like minded folks. Thanks,

Kathe

>

>

> ________________________________________________________________

> Get your name as your email address.

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[Guest guest]

Welcome Kathe, I'm so glad that you found us for support. This is a

wonderful group for great information, and finding people who

understand.

I am also homeschooling my daughter this year, she will be 10 next

month. So, it's challenging at times, but so much fun.

It sounds like your doing good with your diet, it's just very hard, I

know. We just do the best we can, and keep our faith strong.

The RA meds are very important, as you know. It helps stop the

progression of the disease, so that is necessary. There is a lot of

meds out there, you just have to keep trying until you find the best

one suited for you. You take care, Tawny

--- In , Kathe S Barsotti <kbarsotti@j...>

wrote:

> Hello. I am new to the list. I have had RA for almost two years

now.

> My GP discovered it after a year of unexplained foot and joint

pain, by

> finding the RA factor in a blood test. My rheumatologist agrees.

I am

> experiencing pain in approximately 20 joints, hands and feet,

elbows and

> knees mostly. I am a vegetarian (have been for 20 years) and have

been

> trying to find alternative therapies for my pain. I have been

eating an

> ayurvedic diet, which has helped some. I live in a 40 year old

home

> with mold problems. I am trying to move to a home without a

basement,

> but the process is slow. And now the RA is really starting to

affect my

> quality of life with fatigue in addition to the joint pain. I

homeschool

> my two sons, ages 3 and 10, and help to support our family with dog

> grooming. I just saw a rheumatologist last week and she wants me

to

> start on Methotrexate, 6 tabs a week. She also suggests I go on the

> pill, as the methotrexate causes birth defects. I can't really

afford

> any further alternative therapies, my insurance won't cover them.

I have

> already tried chiropractic, acupressure, and panchukarma (cleansing

diet,

> massage, hot mist bath). I hate the thought of being on

prescription

> drugs for the rest of my life, I hate using the over-the-counter

pain

> relievers I'm using now, even if they aren't really helping so much

> anymore. I could use some input from like minded folks. Thanks,

Kathe

>

>

> ________________________________________________________________

> Get your name as your email address.

> Includes spam protection, 1GB storage, no ads and more

> Only $1.99/ month - visit http://www.mysite.com/name today!

[Guest guest]

Kathe,

Maybe you should try the antibiotics first before going on the hard drugs.

I am also going to try undenatured chicken collagen which has no known bad

side effects.

Good luck,

ette

>

[Guest guest]

Welcome Kathe. Sorry about your diagnosis and more sorry that you haven't

been able to control it in spite of all that you have tried. I haven't had

any luck with alternative treatments. Diet helps me somewhat, but the only

real help I've gotten in my 25 year battle with this disease is Enbrel.

I was 42 when I had both knees replaced and now I need new ankles, an elbow,

and probably a shoulder. The rate of erosion is different for everyone,

but just know that joint erosion is possible when making decisions on

treatment. To make an educated decision you need full knowledge of the

disease potential.

I put together a website with a lot of info:

http://rheumatoid.arthritis.freehosting.net/

I'll be updating the info on alternatives. Do you know what started the

joint pain? Did you have an infection or did it just appear? Infections

have been considered possible causes of RA for years. Did your symptoms

start after moving into your home? Mold allergies can cause a host of

symptoms. I hope you're able to kill the mold or find another home.

Here is what the Arthritis Foundations says about alternatives:

http://arthritis.org/resources/arthritistoday/HT_Alternatives.asp

Another option is the antibiotic treatment:

http://roadback.org/

http://rheumatic.org/

These treatments are most effective earlier in the disease. If I didn't

have longstanding disease, antibiotic treatment would be my first choice but

that is because I believe my disease started from an infection.

I believe diet and exercise effect the disease process, so staying as active

as you can and eliminating processed foods may be helpful. I like something

Jack LaLane said at his 90th birthday party - If Man made it, DON'T EAT IT.

a

> Hello. I am new to the list. I have had RA for almost two years now.

> My GP discovered it after a year of unexplained foot and joint pain, by

> finding the RA factor in a blood test. My rheumatologist agrees. I am

> experiencing pain in approximately 20 joints, hands and feet, elbows and

> knees mostly. I am a vegetarian (have been for 20 years) and have been

> trying to find alternative therapies for my pain. I have been eating an

> ayurvedic diet, which has helped some. I live in a 40 year old home

> with mold problems. I am trying to move to a home without a basement,

> but the process is slow. And now the RA is really starting to affect my

> quality of life with fatigue in addition to the joint pain. I homeschool

> my two sons, ages 3 and 10, and help to support our family with dog

> grooming. I just saw a rheumatologist last week and she wants me to

> start on Methotrexate, 6 tabs a week. She also suggests I go on the

> pill, as the methotrexate causes birth defects. I can't really afford

> any further alternative therapies, my insurance won't cover them. I have

> already tried chiropractic, acupressure, and panchukarma (cleansing diet,

> massage, hot mist bath). I hate the thought of being on prescription

> drugs for the rest of my life, I hate using the over-the-counter pain

> relievers I'm using now, even if they aren't really helping so much

> anymore. I could use some input from like minded folks. Thanks, Kathe

>

>

> ________________________________________________________________

> Get your name as your email address.

> Includes spam protection, 1GB storage, no ads and more

> Only $1.99/ month - visit http://www.mysite.com/name today!

>

>

>

>

>

[Guest guest]

ette,

I was in the study for Colloral, which is chicken collagen. The study nurse

told me that she was impressed with the results, but unfortunately they must

not have been good enough. I was disappointed that it wasn't effective

enough to get an approval.

http://www.autoimmuneinc.com/clinic/coll.html

http://www.colloralllc.com/

a

> Kathe,

>

> Maybe you should try the antibiotics first before going on the hard drugs.

> I am also going to try undenatured chicken collagen which has no known bad

> side effects.

>

> Good luck,

> ette

>>

>

>

>

>

>

[Guest guest]

a,

Did you do well with the collagen? I ordered it and will give it a try.

What time of the day did you take it? Babs said to take it in the AM even

though the instructions are for the evening. Are you still taking it?

Thanks,

ette

>