Re: Hope everyone is doing well~a question~just rambling...

July 3, 2006

,

It is so frustraiting watching your child in pain.Anything that you think

might help,go for it,within reason.DO NOT give the Glucosamine with that other

stuff in it.Childrens bones are still growing and it can mess them up.It's realy

best to talk to your childs Dr.first because something that seems harmless

might interact with the traditional therapies.

There has been no proven facts about the nightshade diets.The only type of

arthritis caused by foods is Celiacs disease which is caused by Gluten.

Fish high in Omega 3 have good anti inflamitory properties but I don't think

tuna realy qualafies unless it's fresh and not from a can(darnet).

Hopefuly you will find the right meds soon and wont have to look for ways to

take your childs pain away.

Hugs

Becki and 7 systemic

July 3, 2006

Hi ,

You asked about other types of care for arthritis so I will mention

something that we are doing with Aundrea and in fact our whole

family.

The product is called FrequenSea. If you want information you can

visit www.whyplankton.com and the place to order is

www.myforevergreen.org/534306 (if you are truly interested let me

know and I will give you password and id info)

Anyway, Aundrea has been on this supplement for 6 weeks and then we

retested her labs. After 3 years of having a positive ANA it is now

negative and her labs look better than they have in 3 years. This

is good news for us and the only difference in her care has been the

use of FrequenSea. We have provided the information to her

rheumatologist and we also gave him a bottle of it on our last

visit. I believe you must always coordinate care whether its

supplements or medication thru the knowledge of the doctor. I can't

emphasize that enough!

It is so hard to tell someone that has a chronic condition about a

supplement because we all know that well meaning people will suggest

to you everything from wearing magnets to eating buckets of

blueberries. On the other hand I know we also hear to suggestions

on the best heat pad, NSAID, therapy program etc and I guess I will

just share this with you and you can take it or leave it. Its

something that we are doing as a family and we really see the

benefit but each person must pave their own way thru this journey

and find the course that helps them the most!

I am hoping that your sweet starts to feel better soon!

Blessings,

(Aundrea 10 systemic jra) !

-

-- In , naturesnotionsnj@... wrote:

>

> Hopefully all of our children are feeling like children today!

> We've been bouncing back and forth the last few days. (

> Yesterday, 's knees swelled, but there was no heat or pain,

again I

> am so lost anymore because of this condition....

> And she woke me up around 330am crying that her arm hurt. I asked

her to

> show me where and she pointed from her shoulder to her fingers. I

didn't feel

> any swelling or heat, and am really hoping that she had just slept

on it wrong.

> Today, there is still some swelling around the knees, but no pain

or

> excessive heat, and her arm feels fine...

>

> I bought this book the other day called The Arthritis Cure.. I

didn't

> realize that it was mainly about Osteoarthritis, but it had some

really interesting

> suggestions in it as far as things to do at home for helping ease

the pain,

> some vitamin supplements to try, and some foods to avoid.

> Does any one know if suggestions for other forms of arthritis can

help a

> child with JRA?

> I'm willing to try some of the things, if they might work.

>

> I ordered some MSM the other week and it arrived over the weekend.

I'm going

> to make a cream for and try rubbing it on her knees when

they hurt

> to see if it helps her any.

> I've heard from quite a few people(mainly adults) that use MSM

regularly and

> all they can do is brag about the wonders it works on their aches

and pains.

> So I figured, hey why not? If it works, great, if it doesn't, well

I guess

> I'll find something else to do with it! )

>

> I've had a few family members that receive acupuncture with

successful

> results suggest that I take down and try it out and see if

it might work

> on her. It was a brief thought.. for about 5 secs... The poor kid

is

> traumatized enough with needles, do you really think she's going

to lay there

> willingly and let you put hundreds of them in her???? No, I didn't

think so either.

>

> Hope everyone has a great holiday. I'll be melting in the heat

tomorrow,

> selling soaps at such at a local festival. Then my gmom is

bringing all the kids

> down to watch the fireworks.

>

> Big hugs to all!

> ( , 5 ,JRA, AkSp, ???)

>

July 3, 2006

In a message dated 7/3/2006 7:12:58 P.M. Eastern Daylight Time,

Arthurnator@... writes:

DO NOT give the Glucosamine with that other

stuff in it.Childrens bones are still growing and it can mess them up.It's

realy

best to talk to your childs Dr.first because something that seems harmless

might interact with the traditional therapies.

Thanks Becky. The MSM I ordered, I'm going to use that in a lotion. I know

that there are people who take it as a supplement, but the ones I've been

talking with have used it topically, in creams and put it on the achy joints.

I've read a lot of herbal alternatives, and my husband uses a lot of them,

but I'm not comfortable giving anything like that to . I don't know what

does you would give to a 34 lb 5 yr old, nor do I feel her stomach and body

could tolerate anything like that, since her " innerds " are still so young.

Hugs to all !

))

( , 5 ,JRA, AkSp)

July 6, 2006

Thank you , for the link for the FrequentSea. I'll have to look into it.

I've been reading and researching everything I can get my hands on,

especially things that are simple, like exercises, foods, that I can try out

without

hurting .

))

( , 5 ,JRA, AkSp)

July 6, 2006

In a message dated 7/6/2006 4:51:23 P.M. Eastern Daylight Time,

sonia1md@... writes:

one other website that you may want to check out is

_www.provibranthealtwww.provibra_ (http://www.provibranthealth.com/health)

Thank you! I'll check it out!

.. do you take swimming?

Yes, I do. She likes just to sit in the cold water sometimes.. says it helps

her knees not hurt. She's usually in the pool everyday.

I also bought her an inexpensive foot

spa from walmart..she uses it for achey ankles and this week we have

soaked her hands in it due to lots of finger joint pain.

I never thought about that. And I have a few of them that I use for home spa

parties! Guess I'm gonna be " stealing " one from myself and trying it out.

))

How has been feeling this week?

This week, she seems to be doing good. She was complaining about her

shoulders a little bit this morning, but they don't really seem to be bothering

her

too much(meaning, I haven't heard her say anything since 10am)

Other than that, she hasn't really had any problems over the last few days.

Hopefully it stays that way.

)))

( , 5 ,JRA, AkSp)

July 6, 2006

We have done the same thing with our daughter, Aundrea as far as

looking at natural means of helping to alleviate pain/fatigue as well

as protect against other diseases.

Some things we have tried have worked while others we noticed very

little change. None of them have been harmful to her so thats always

good.

My favorite supplement has by far been FrequenSea...Its so easy to

take and it was like one stop shopping...it has everything in it

compared to having to take a handful of vitamins/supplements...I also

like that its a liquid...The best absorption of pills is 20-30% and

Frequensea is 98% absorbed because it goes directly to the cellular

level.

one other website that you may want to check out is

www.provibranthealth.com/health

Please let me know if you have any questions.

P.S. do you take swimming? That is the easiest form of

exercise for Aundrea...She likes bike riding too but sometimes it

hurts her hands and shoulders. I also bought her an inexpensive foot

spa from walmart..she uses it for achey ankles and this week we have

soaked her hands in it due to lots of finger joint pain.

How has been feeling this week?

(Aundrea 10 systemic jra)

>

> Thank you , for the link for the FrequentSea. I'll have to look

into it.

> I've been reading and researching everything I can get my hands on,

> especially things that are simple, like exercises, foods, that I can

try out without

> hurting .

> ))

> ( , 5 ,JRA, AkSp)

>

July 6, 2006

- I am sorry to hear that Aundrea is having more joint pain.... Do

the warm soaks work for her? Is she taking Tylenol or ibuprofen? I know

you are trying to hold off on restarting any meds until you have to, but I

didn't know if she was willing to take those if needed....

How's the Arizona weather? And your business?? Does your husband try any

thing chiropractically to help her? So many people try to get us to send

Caroline to a chiropractor and I am just not sure what they could do for

her..

Alia and Caroline, age 4, poly and uveitis

Evan Guy - Just turned the big NUMBER 1!!

" sonia1md " <sonia1md@...>

Sent by:

07/06/2006 03:48 PM

Please respond to

To

cc

Subject

Re: Hope everyone is doing well~a question~just rambling...

We have done the same thing with our daughter, Aundrea as far as

looking at natural means of helping to alleviate pain/fatigue as well

as protect against other diseases.

Some things we have tried have worked while others we noticed very

little change. None of them have been harmful to her so thats always

good.

My favorite supplement has by far been FrequenSea...Its so easy to

take and it was like one stop shopping...it has everything in it

compared to having to take a handful of vitamins/supplements...I also

like that its a liquid...The best absorption of pills is 20-30% and

Frequensea is 98% absorbed because it goes directly to the cellular

level.

one other website that you may want to check out is

www.provibranthealth.com/health

Please let me know if you have any questions.

P.S. do you take swimming? That is the easiest form of

exercise for Aundrea...She likes bike riding too but sometimes it

hurts her hands and shoulders. I also bought her an inexpensive foot

spa from walmart..she uses it for achey ankles and this week we have

soaked her hands in it due to lots of finger joint pain.

How has been feeling this week?

(Aundrea 10 systemic jra)

>

> Thank you , for the link for the FrequentSea. I'll have to look

into it.

> I've been reading and researching everything I can get my hands on,

> especially things that are simple, like exercises, foods, that I can

try out without

> hurting .

> ))

> ( , 5 ,JRA, AkSp)

>

July 6, 2006

Hi Alia,

The warm soaks due seem to help Aundrea. She has agreed to take

ibuprofen a couple of times when the muscle pain was really

bothering her. She is REALLY leary of medication so when she does

agree to take it, I know that her pain level is really

high...believe me I often offer it to her, but mostly she will

refuse. Her dr. says she is stoic and use to feeling pain...how

sad :-(

Currently, we have still held off on restarting meds. Its been kind

of humid actually here in Az and I am wondering if that is making

her joints ache a little more.

My understanding is that because Aundrea has no swelling (or at

least very minimal in finger joints) then there is much less chance

of deformity or permanent damage....This has been the reasoning

given to us as to why its been ok to hold off for a bit on

restarting the drugs.

I would equate her pain as similar to that of a headache that can

range from mild to severe. Her joints at times throb and she has

muscle weakness where she gets tired and has to sit. We really are

just monitoring her closely..if joints swell or she has a worsening

of flare with fevers, sore throat, severe joint pain then we will

pursue medications again.

Aundrea does receive regular chiropractic care but its probably much

different that what you are familiar with. My husband specializes

in Nucca Chiropractic which means he adjusts the top bone of the

spine called atlas and this in turn brings the entire spine into

alignment. This is the most gentle chiropractic care available and

we believe it provides long lasting results therefore decreasing the

need for frequent chiropractic visits. We have seen lots of

benefits with children in regards to chiropractic particularly those

that have adhd, sleep troubles, colic, digestive problems, earaches,

sinus infections etc...The nervous systmem flows through your

vertebrae so if the atlas is in proper alignment then the brain is

able to communicate without any interference to the nervous system.

For information regarding the type of technique that my husband uses

you could visit www.nucca.org

Kids particularly love this technique because there is no popping,

twisting, or turning. Its incredibly gentle and yet its so powerful.

You can visit our website at www.anthemspinalcare.com The " about us "

page shows a picture of me and gives my testimony regarding Nucca

Chiropractic.

I wish that I were getting to go to AJAO. I would love to meet you

and have a chance to see Miss Caroline in person as well as the big

one year old! Hope you have a safe drive.

P.S. How are you guys enduring the never ending steroid drops???

(Aundrea 10 systemic jra)

-- In , Alia.Pranke@... wrote:

>

> - I am sorry to hear that Aundrea is having more joint

pain.... Do

> the warm soaks work for her? Is she taking Tylenol or ibuprofen? I

know

> you are trying to hold off on restarting any meds until you have

to, but I

> didn't know if she was willing to take those if needed....

>

> How's the Arizona weather? And your business?? Does your husband

try any

> thing chiropractically to help her? So many people try to get us

to send

> Caroline to a chiropractor and I am just not sure what they could

do for

> her..

>

> Alia and Caroline, age 4, poly and uveitis

> Evan Guy - Just turned the big NUMBER 1!!

>

> " sonia1md " <sonia1md@...>

> Sent by:

> 07/06/2006 03:48 PM

> Please respond to

>

> To

>

> cc

>

> Subject

> Re: Hope everyone is doing well~a question~just rambling...

>

> We have done the same thing with our daughter, Aundrea as far as

> looking at natural means of helping to alleviate pain/fatigue as

well

> as protect against other diseases.

>

> Some things we have tried have worked while others we noticed very

> little change. None of them have been harmful to her so thats

always

> good.

>

> My favorite supplement has by far been FrequenSea...Its so easy to

> take and it was like one stop shopping...it has everything in it

> compared to having to take a handful of vitamins/supplements...I

also

> like that its a liquid...The best absorption of pills is 20-30%

and

> Frequensea is 98% absorbed because it goes directly to the

cellular

> level.

>

> one other website that you may want to check out is

> www.provibranthealth.com/health

>

> Please let me know if you have any questions.

>

> P.S. do you take swimming? That is the easiest form of

> exercise for Aundrea...She likes bike riding too but sometimes it

> hurts her hands and shoulders. I also bought her an inexpensive

foot

> spa from walmart..she uses it for achey ankles and this week we

have

> soaked her hands in it due to lots of finger joint pain.

>

> How has been feeling this week?

>

> (Aundrea 10 systemic jra)

>

> >

> > Thank you , for the link for the FrequentSea. I'll have to

look

> into it.

> > I've been reading and researching everything I can get my hands

on,

> > especially things that are simple, like exercises, foods, that I

can

> try out without

> > hurting .

> > ))

> > ( , 5 ,JRA, AkSp)

> >

July 6, 2006

Hi - I am glad to hear that the pain isn't to unbearable for her.

These poor kids though - I don't know if I could take what they go

through. They ALL amaze me! I am glad she's at least willing to think

about the meds. I know what a bad taste she has for them (literally and

figuratively!!).

I have heard of that type before. Actually my mom in Florida see's a guy

at Atlas Chiropractic and highly recommended him. His mentor is here

locally in Rosemount, which isn't too far away from us. My mom keeps

pushing us to take Caroline off all her meds and see this guy. I just

don't know. I worry about her eyes and the damage that can be done without

even knowing it. Miss Caroline's neck gets so stiff and inflamed at each

medicine taper attempt and that is worrisome to me too.... I don't know.

You know a lot about Caroline, do you really think it's worth trying??

I wish you were coming too!! Boo Hoo... Maybe next year it will be in

Arizona or Colorado or something.... We should take bets on where it will

be. I am thinking Tennessee or Ohio....

Alia and Caroline, age 4, poly and uveitis

Evan Guy, age 1 and bound for tubes!!

" sonia1md " <sonia1md@...>

Sent by:

07/06/2006 05:08 PM

Please respond to

To

cc

Subject

Re: Hope everyone is doing well~a question~just rambling...

Hi Alia,

The warm soaks due seem to help Aundrea. She has agreed to take

ibuprofen a couple of times when the muscle pain was really

bothering her. She is REALLY leary of medication so when she does

agree to take it, I know that her pain level is really

high...believe me I often offer it to her, but mostly she will

refuse. Her dr. says she is stoic and use to feeling pain...how

sad :-(

Currently, we have still held off on restarting meds. Its been kind

of humid actually here in Az and I am wondering if that is making

her joints ache a little more.

My understanding is that because Aundrea has no swelling (or at

least very minimal in finger joints) then there is much less chance

of deformity or permanent damage....This has been the reasoning

given to us as to why its been ok to hold off for a bit on

restarting the drugs.

I would equate her pain as similar to that of a headache that can

range from mild to severe. Her joints at times throb and she has

muscle weakness where she gets tired and has to sit. We really are

just monitoring her closely..if joints swell or she has a worsening

of flare with fevers, sore throat, severe joint pain then we will

pursue medications again.

Aundrea does receive regular chiropractic care but its probably much

different that what you are familiar with. My husband specializes

in Nucca Chiropractic which means he adjusts the top bone of the

spine called atlas and this in turn brings the entire spine into

alignment. This is the most gentle chiropractic care available and

we believe it provides long lasting results therefore decreasing the

need for frequent chiropractic visits. We have seen lots of

benefits with children in regards to chiropractic particularly those

that have adhd, sleep troubles, colic, digestive problems, earaches,

sinus infections etc...The nervous systmem flows through your

vertebrae so if the atlas is in proper alignment then the brain is

able to communicate without any interference to the nervous system.

For information regarding the type of technique that my husband uses

you could visit www.nucca.org

Kids particularly love this technique because there is no popping,

twisting, or turning. Its incredibly gentle and yet its so powerful.

You can visit our website at www.anthemspinalcare.com The " about us "

page shows a picture of me and gives my testimony regarding Nucca

Chiropractic.

I wish that I were getting to go to AJAO. I would love to meet you

and have a chance to see Miss Caroline in person as well as the big

one year old! Hope you have a safe drive.

P.S. How are you guys enduring the never ending steroid drops???

(Aundrea 10 systemic jra)

-- In , Alia.Pranke@... wrote:

>

> - I am sorry to hear that Aundrea is having more joint

pain.... Do

> the warm soaks work for her? Is she taking Tylenol or ibuprofen? I

know

> you are trying to hold off on restarting any meds until you have

to, but I

> didn't know if she was willing to take those if needed....

>

> How's the Arizona weather? And your business?? Does your husband

try any

> thing chiropractically to help her? So many people try to get us

to send

> Caroline to a chiropractor and I am just not sure what they could

do for

> her..

>

> Alia and Caroline, age 4, poly and uveitis

> Evan Guy - Just turned the big NUMBER 1!!

>

> " sonia1md " <sonia1md@...>

> Sent by:

> 07/06/2006 03:48 PM

> Please respond to

>

> To

>

> cc

>

> Subject

> Re: Hope everyone is doing well~a question~just rambling...

>

> We have done the same thing with our daughter, Aundrea as far as

> looking at natural means of helping to alleviate pain/fatigue as

well

> as protect against other diseases.

>

> Some things we have tried have worked while others we noticed very

> little change. None of them have been harmful to her so thats

always

> good.

>

> My favorite supplement has by far been FrequenSea...Its so easy to

> take and it was like one stop shopping...it has everything in it

> compared to having to take a handful of vitamins/supplements...I

also

> like that its a liquid...The best absorption of pills is 20-30%

and

> Frequensea is 98% absorbed because it goes directly to the

cellular

> level.

>

> one other website that you may want to check out is

> www.provibranthealth.com/health

>

> Please let me know if you have any questions.

>

> P.S. do you take swimming? That is the easiest form of

> exercise for Aundrea...She likes bike riding too but sometimes it

> hurts her hands and shoulders. I also bought her an inexpensive

foot

> spa from walmart..she uses it for achey ankles and this week we

have

> soaked her hands in it due to lots of finger joint pain.

>

> How has been feeling this week?

>

> (Aundrea 10 systemic jra)

>

> >

> > Thank you , for the link for the FrequentSea. I'll have to

look

> into it.

> > I've been reading and researching everything I can get my hands

on,

> > especially things that are simple, like exercises, foods, that I

can

> try out without

> > hurting .

> > ))

> > ( , 5 ,JRA, AkSp)

> >

July 6, 2006

No Alia I don't advocate at all for you to take Caroline off her

medications. If Aundrea had uveitis I would treat it. If she had

joint swelling leading to potential damage..I would treat it. If she

had ongoing fevers, fatigue and moderate to severe pain...I would

treat it.

I do think that Chiropractic is beneficial and it doesn't have to be

All or Nothing. Aundrea receives supplements, chiropractic and

medication when its agreed upon by us and her rheumatolgoist...I am

not against medication. Many kids on this list are alive and

functioning today due to the benefits of DMARDS, Biologics, steroids

etc...

I happen to believe that the best care for my child and any person

for that matter is one that is open to looking at nutrition, diet,

exercise, chiropractic and medical care.

Caroline needs the eye drops to treat the uveitis...I do think that

Chiropractic is a safe option that should be considered and may help

with her sinus infections and other allergy type concerns. A well

balanced spine simply allows the body to function at its best. I

don't believe that chiropractic is a " cure-all " nor do I think that

mediations are 100% safe...I resent the implication when that is the

philosophy of medical doctors just as I would resent a chiropractor

saying that his care will cure whatever ails you.

I hope this makes sense to you...I just feel that I am doing my best

in caring for Aundrea when I consider all aspects of her health and

the different providers that she can benefit from. Our

rheumatologist happens to be one that is a believer in supplements,

yoga, chiropractic etc. It makes it easier for us to really be

honest with him about our concerns and also makes us more willing to

be compliant with a treatment plan as far as medication when he says

its time to restart, increase, decrease add, etc....because

we " trust " him.

I would love to check out this guy that your mom is recommending you

go to...if you have his name let me know and I will see what I can

find out.

Check out the websites and let me know if you have questions.

(aundrea 10 systemic jra)

> > >

> > > Thank you , for the link for the FrequentSea. I'll have

to

> look

> > into it.

> > > I've been reading and researching everything I can get my

hands

> on,

> > > especially things that are simple, like exercises, foods, that

I

> can

> > try out without

> > > hurting .

> > > ))

> > > ( , 5 ,JRA, AkSp)

> > >

July 7, 2006

- You made me feel much better!! I feel like people in my family

want me to get rid of all the medicines and go the holistic approach.

While I feel that it could be less toxic on her body, I fear the long term

damage that could be done in the interim. I too would LOVE to find that

balance. It's becoming real old listening to people tell me that she is

only having these reactions because we are pumping her body full of toxic

crap. Deep down I feel we are making the right choices for Caroline. As

you all know we have been on such a roller coaster with her and never once

in the past 2 1/2 years has anything been easy for her. She is so unstable

that I fear making any change unless absolutely necessary. ONE DAY - when

she reaches that point where both her Uveitis and her Arthritis are calm I

would be willing to look into other options...

I will get the name from my mom and let you know. I am going to check out

your website now!

Alia and Caroline, age 4, poly and uveitis

Evan Guy, age 1, " I just learned to walk backwards! "

" sonia1md " <sonia1md@...>

Sent by:

07/06/2006 06:41 PM

Please respond to

To

cc

Subject

Re: Hope everyone is doing well~a question~just rambling...

No Alia I don't advocate at all for you to take Caroline off her

medications. If Aundrea had uveitis I would treat it. If she had

joint swelling leading to potential damage..I would treat it. If she

had ongoing fevers, fatigue and moderate to severe pain...I would

treat it.

I do think that Chiropractic is beneficial and it doesn't have to be

All or Nothing. Aundrea receives supplements, chiropractic and

medication when its agreed upon by us and her rheumatolgoist...I am

not against medication. Many kids on this list are alive and

functioning today due to the benefits of DMARDS, Biologics, steroids

etc...

I happen to believe that the best care for my child and any person

for that matter is one that is open to looking at nutrition, diet,

exercise, chiropractic and medical care.

Caroline needs the eye drops to treat the uveitis...I do think that

Chiropractic is a safe option that should be considered and may help

with her sinus infections and other allergy type concerns. A well

balanced spine simply allows the body to function at its best. I

don't believe that chiropractic is a " cure-all " nor do I think that

mediations are 100% safe...I resent the implication when that is the

philosophy of medical doctors just as I would resent a chiropractor

saying that his care will cure whatever ails you.

I hope this makes sense to you...I just feel that I am doing my best

in caring for Aundrea when I consider all aspects of her health and

the different providers that she can benefit from. Our

rheumatologist happens to be one that is a believer in supplements,

yoga, chiropractic etc. It makes it easier for us to really be

honest with him about our concerns and also makes us more willing to

be compliant with a treatment plan as far as medication when he says

its time to restart, increase, decrease add, etc....because

we " trust " him.

I would love to check out this guy that your mom is recommending you

go to...if you have his name let me know and I will see what I can

find out.

Check out the websites and let me know if you have questions.

(aundrea 10 systemic jra)

> > >

> > > Thank you , for the link for the FrequentSea. I'll have

to

> look

> > into it.

> > > I've been reading and researching everything I can get my

hands

> on,

> > > especially things that are simple, like exercises, foods, that

I

> can

> > try out without

> > > hurting .

> > > ))

> > > ( , 5 ,JRA, AkSp)

> > >

July 7, 2006

Alia,

I really feel for you. Its hard enough to have a chronically ill

child and then to have people that you care about suggest or imply

that you are making your child worse by giving her toxic drugs only

makes things harder on you.

Noone loves Miss Caroline more than you and your husband. Noone has

her best interest at heart more than you. You guys have had to make

tough choices and look at all aspects and proceed with what you feel

is best for your daughter.

Try to look at it this way...If your child has a heart problem then

you would take her to see a cardiologist...You want the best doctor

in that field..Now that wouldn't make you up and fire the rheumy,

because you know the rheumy is your expert for joints...Its the same

way with a competent chiropractor...You just add them to the mix

because they are the expert of the spine which influences the

function of the nervous system. Its ok to find a blend of services.

I don't consider myself as willing to only treat Aundrea

holistically...When her joints hurt we call her rheumy...when she

has an earache, headache, digestive problems, backache etc..she sees

my husband so she can get an adjustment. If problems persist we see

her primary doc and if need be we would try an antibiotic etc.

Believe me it is possible to continue every course of treatment that

you have Caroline on and still look at other means of health care to

give her every fighting chance possible.

You are an excellent mom to two beautiful kids..I know that your mom

means well but I do believe she is misguided if she thinks that the

best course of treatment for Caroline is to discontinue all meds and

do chiropractic alone.

Blessings,

(Aundrea 10 systemic jra)-

-- In , Alia.Pranke@... wrote:

>

> - You made me feel much better!! I feel like people in my

family

> want me to get rid of all the medicines and go the holistic

approach.

> While I feel that it could be less toxic on her body, I fear the

long term

> damage that could be done in the interim. I too would LOVE to find

that

> balance. It's becoming real old listening to people tell me that

she is

> only having these reactions because we are pumping her body full

of toxic

> crap. Deep down I feel we are making the right choices for

Caroline. As

> you all know we have been on such a roller coaster with her and

never once

> in the past 2 1/2 years has anything been easy for her. She is so

unstable

> that I fear making any change unless absolutely necessary. ONE

DAY - when

> she reaches that point where both her Uveitis and her Arthritis

are calm I

> would be willing to look into other options...

>

> I will get the name from my mom and let you know. I am going to

check out

> your website now!

>

> Alia and Caroline, age 4, poly and uveitis

> Evan Guy, age 1, " I just learned to walk backwards! "

>

> " sonia1md " <sonia1md@...>

> Sent by:

> 07/06/2006 06:41 PM

> Please respond to

>

> To

>

> cc

>

> Subject

> Re: Hope everyone is doing well~a question~just rambling...

>

> No Alia I don't advocate at all for you to take Caroline off her

> medications. If Aundrea had uveitis I would treat it. If she had

> joint swelling leading to potential damage..I would treat it. If

she

> had ongoing fevers, fatigue and moderate to severe pain...I would

> treat it.

>

> I do think that Chiropractic is beneficial and it doesn't have to

be

> All or Nothing. Aundrea receives supplements, chiropractic and

> medication when its agreed upon by us and her rheumatolgoist...I

am

> not against medication. Many kids on this list are alive and

> functioning today due to the benefits of DMARDS, Biologics,

steroids

> etc...

>

> I happen to believe that the best care for my child and any person

> for that matter is one that is open to looking at nutrition, diet,

> exercise, chiropractic and medical care.

>

> Caroline needs the eye drops to treat the uveitis...I do think

that

> Chiropractic is a safe option that should be considered and may

help

> with her sinus infections and other allergy type concerns. A well

> balanced spine simply allows the body to function at its best. I

> don't believe that chiropractic is a " cure-all " nor do I think

that

> mediations are 100% safe...I resent the implication when that is

the

> philosophy of medical doctors just as I would resent a

chiropractor

> saying that his care will cure whatever ails you.

>

> I hope this makes sense to you...I just feel that I am doing my

best

> in caring for Aundrea when I consider all aspects of her health

and

> the different providers that she can benefit from. Our

> rheumatologist happens to be one that is a believer in

supplements,

> yoga, chiropractic etc. It makes it easier for us to really be

> honest with him about our concerns and also makes us more willing

to

> be compliant with a treatment plan as far as medication when he

says

> its time to restart, increase, decrease add, etc....because

> we " trust " him.

>

> I would love to check out this guy that your mom is recommending

you

> go to...if you have his name let me know and I will see what I can

> find out.

>

> Check out the websites and let me know if you have questions.

>

> (aundrea 10 systemic jra)

>

> > > >

> > > > Thank you , for the link for the FrequentSea. I'll have

> to

> > look

> > > into it.

> > > > I've been reading and researching everything I can get my

> hands

> > on,

> > > > especially things that are simple, like exercises, foods,

that

> I

> > can

> > > try out without

> > > > hurting .

> > > > ))

> > > > ( , 5 ,JRA, AkSp)

> > > >

July 8, 2006

No one understands the situation till they have lived through it themselves. My

parents divorced when I was nine and I have always lived with my dad, he went

through a phase where he thought that the medicine was just making me worse and

that my mom was allowing me to be sick, he wasn't trying to be mean, but he just

couldn't understand why arthritis required chemotherapy and immune suppresants.

A few years ago my dad was diagnosed with arthritis, his whole attitude changed,

he never got it until then. People dont get it, that its necessary, that yes

these medicines are toxic, but they are also necessary. But its not for them to

get, you are an amazing mom Alia, and Caroline is so lucky to have such a good

advocate for her. You have done a great job, and you are doing everything in

your power from keeping your daughter from being crippled and going blind, I

think if that would have been you and your mom was in your position she would

have done the same thing, but when you

aren't there everyday to see it, its easier to pretend its not that bad..

Lots of Love

(JAS, 21)

sonia1md <sonia1md@...> wrote:

Alia,

I really feel for you. Its hard enough to have a chronically ill

child and then to have people that you care about suggest or imply

that you are making your child worse by giving her toxic drugs only

makes things harder on you.

Noone loves Miss Caroline more than you and your husband. Noone has

her best interest at heart more than you. You guys have had to make

tough choices and look at all aspects and proceed with what you feel

is best for your daughter.

Try to look at it this way...If your child has a heart problem then

you would take her to see a cardiologist...You want the best doctor

in that field..Now that wouldn't make you up and fire the rheumy,

because you know the rheumy is your expert for joints...Its the same

way with a competent chiropractor...You just add them to the mix

because they are the expert of the spine which influences the

function of the nervous system. Its ok to find a blend of services.

I don't consider myself as willing to only treat Aundrea

holistically...When her joints hurt we call her rheumy...when she

has an earache, headache, digestive problems, backache etc..she sees

my husband so she can get an adjustment. If problems persist we see

her primary doc and if need be we would try an antibiotic etc.

Believe me it is possible to continue every course of treatment that

you have Caroline on and still look at other means of health care to

give her every fighting chance possible.

You are an excellent mom to two beautiful kids..I know that your mom

means well but I do believe she is misguided if she thinks that the

best course of treatment for Caroline is to discontinue all meds and

do chiropractic alone.

Blessings,

(Aundrea 10 systemic jra)-

-- In , Alia.Pranke@... wrote:

>

> - You made me feel much better!! I feel like people in my

family

> want me to get rid of all the medicines and go the holistic

approach.

> While I feel that it could be less toxic on her body, I fear the

long term

> damage that could be done in the interim. I too would LOVE to find

that

> balance. It's becoming real old listening to people tell me that

she is

> only having these reactions because we are pumping her body full

of toxic

> crap. Deep down I feel we are making the right choices for

Caroline. As

> you all know we have been on such a roller coaster with her and

never once

> in the past 2 1/2 years has anything been easy for her. She is so

unstable

> that I fear making any change unless absolutely necessary. ONE

DAY - when

> she reaches that point where both her Uveitis and her Arthritis

are calm I

> would be willing to look into other options...

>

> I will get the name from my mom and let you know. I am going to

check out

> your website now!

>

> Alia and Caroline, age 4, poly and uveitis

> Evan Guy, age 1, " I just learned to walk backwards! "

>

> " sonia1md " <sonia1md@...>

> Sent by:

> 07/06/2006 06:41 PM

> Please respond to

>

> To

>

> cc

>

> Subject

> Re: Hope everyone is doing well~a question~just rambling...

>

> No Alia I don't advocate at all for you to take Caroline off her

> medications. If Aundrea had uveitis I would treat it. If she had

> joint swelling leading to potential damage..I would treat it. If

she

> had ongoing fevers, fatigue and moderate to severe pain...I would

> treat it.

>

> I do think that Chiropractic is beneficial and it doesn't have to

be

> All or Nothing. Aundrea receives supplements, chiropractic and

> medication when its agreed upon by us and her rheumatolgoist...I

am

> not against medication. Many kids on this list are alive and

> functioning today due to the benefits of DMARDS, Biologics,

steroids

> etc...

>

> I happen to believe that the best care for my child and any person

> for that matter is one that is open to looking at nutrition, diet,

> exercise, chiropractic and medical care.

>

> Caroline needs the eye drops to treat the uveitis...I do think

that

> Chiropractic is a safe option that should be considered and may

help

> with her sinus infections and other allergy type concerns. A well

> balanced spine simply allows the body to function at its best. I

> don't believe that chiropractic is a " cure-all " nor do I think

that

> mediations are 100% safe...I resent the implication when that is

the

> philosophy of medical doctors just as I would resent a

chiropractor

> saying that his care will cure whatever ails you.

>

> I hope this makes sense to you...I just feel that I am doing my

best

> in caring for Aundrea when I consider all aspects of her health

and

> the different providers that she can benefit from. Our

> rheumatologist happens to be one that is a believer in

supplements,

> yoga, chiropractic etc. It makes it easier for us to really be

> honest with him about our concerns and also makes us more willing

to

> be compliant with a treatment plan as far as medication when he

says

> its time to restart, increase, decrease add, etc....because

> we " trust " him.

>

> I would love to check out this guy that your mom is recommending

you

> go to...if you have his name let me know and I will see what I can

> find out.

>

> Check out the websites and let me know if you have questions.

>

> (aundrea 10 systemic jra)

>

> > > >

> > > > Thank you , for the link for the FrequentSea. I'll have

> to

> > look

> > > into it.

> > > > I've been reading and researching everything I can get my

> hands

> > on,

> > > > especially things that are simple, like exercises, foods,

that

> I

> > can

> > > try out without

> > > > hurting .

> > > > ))

> > > > ( , 5 ,JRA, AkSp)

> > > >

July 8, 2006