RE: Dietary Control of JRA?

March 24, 2011

Sharon,

I don't have any answers for you but just wanted to say that my mom has

been trying ever since Bradley was diagnosed to get us to change diet. She

is also now seeing a holistic health practitioner and REALLY wants me to

take Bradley to him. I don't have a problem with this but I told her that we

will NOT be taking him off of ANY of his medications to try herbal remedies

or what not. I know she means well and hates to see him on such hard core

meds but I am not willing to take a risk with his vision (he has Uveitis) to

try alternative methods.

That said, I do know of some people who at past conferences say that

eliminating certain foods helped their kids avoid flares. I guess certain

foods are triggers for some and by eliminating these from their diet can

help kids which is GREAT!!

Sorry I am not more helpful.

Sincerely,

marie (Mommy to Bradley-Pauci, ANA+ and Uveitis)

On Thu, Mar 24, 2011 at 8:00 AM, sharon.peabody <swaleans@...>wrote:

>

> Good morning, everyone.

>

> I hope that the day is going well thus far.

>

> I have something that I wanted to bounce off of folks here and see if

> anyone has any insight to it or have heard of it.

>

> The backstory - apparently there is a neighbor in my MIL's neighborhood

> whose daughter has JRA. Due to circumstances I don't quite know all the

> details on, her father lost his job and consequently his health insurance.

> So she is not under active treatment of an MD for her JRA. They are opting

> to take a more holistic approach to treat her JRA, namely through dietary

> control. He apparently talked with my MIL at length about this approach and

> gave her some things to watch on youtube talking about the diet that they're

> using. She has passed it along to us as a FYI and food for thought.

>

> Has anyone ever heard or researched anything about the dietary approach to

> controlling JRA? I am in no way suggesting that my husband and I are going

> to change 's treatment (far from it, I think it's what he needs). But

> I'm curious if any of the more experienced folks here have heard of this.

>

> Thanks!

> Sharon

>

--

~marie~

March 24, 2011

we have another child in our church that has jia and after being treated

agressively for a yr , went into remission they said..... they put her on a

special diet I know gluten free was part of it She also seen a naturalpath (

sp?) doctor who put her on alot of different suppliments and stuff , I am not

sure exactually what , just going by what this childs mom has told me in our

talks abotu our girls. Well within a few months of being off her medications

perscribled by her rheumy she has now in a really bad flare up , and has chosen

to go back on mtx . It may work for some but not for others I suppose like

everything else. I have celiac so my daughter follows a close gluten free diet

just to make it easier on me ... but I don't see alot of difference in her jia

because of it.

To each their own I guess, we are all willing to try something in the hopes it

helps especially in a time where the Natural wa is pushed on alot of us ... or

forced by income, but even natural remedies are not cheap , they come at a price

too,

Just my two cents worth,

( mom to Sophie 6, jia and iga deficiency)

>

> Good morning, everyone.

>

> I hope that the day is going well thus far.

>

> I have something that I wanted to bounce off of folks here and see if anyone

has any insight to it or have heard of it.

>

> The backstory - apparently there is a neighbor in my MIL's neighborhood whose

daughter has JRA. Due to circumstances I don't quite know all the details on,

her father lost his job and consequently his health insurance. So she is not

under active treatment of an MD for her JRA. They are opting to take a more

holistic approach to treat her JRA, namely through dietary control. He

apparently talked with my MIL at length about this approach and gave her some

things to watch on youtube talking about the diet that they're using. She has

passed it along to us as a FYI and food for thought.

>

> Has anyone ever heard or researched anything about the dietary approach to

controlling JRA? I am in no way suggesting that my husband and I are going to

change 's treatment (far from it, I think it's what he needs). But I'm

curious if any of the more experienced folks here have heard of this.

>

> Thanks!

> Sharon

>

March 24, 2011

Thanks, marie!

That is helpful - your feeling is much how I feel as well. We're not taking

off of any of his meds - I'm 100% convinced that they are what are best

for him right now, even with the side effects that have to be managed. She

hasn't said anything to us other than a FYI on the information - thank goodness,

I really dont' want to start arguing with people over treatments - and I don't

think she will. But I also want to have information in my back pocket, just in

case, iykwim?

And I agree that if certain foods can be avoided to reduce flares that's great.

I know at this point I'm just thrilled that is eating anything in sight,

especially since his eating had really dropped off when he was really sick.

Hugs!

Sharon (, 16 months old, systemic)

>

> >

> > Good morning, everyone.

> >

> > I hope that the day is going well thus far.

> >

> > I have something that I wanted to bounce off of folks here and see if

> > anyone has any insight to it or have heard of it.

> >

> > The backstory - apparently there is a neighbor in my MIL's neighborhood

> > whose daughter has JRA. Due to circumstances I don't quite know all the

> > details on, her father lost his job and consequently his health insurance.

> > So she is not under active treatment of an MD for her JRA. They are opting

> > to take a more holistic approach to treat her JRA, namely through dietary

> > control. He apparently talked with my MIL at length about this approach and

> > gave her some things to watch on youtube talking about the diet that they're

> > using. She has passed it along to us as a FYI and food for thought.

> >

> > Has anyone ever heard or researched anything about the dietary approach to

> > controlling JRA? I am in no way suggesting that my husband and I are going

> > to change 's treatment (far from it, I think it's what he needs). But

> > I'm curious if any of the more experienced folks here have heard of this.

> >

> > Thanks!

> > Sharon

> >

>

> --

>

> ~marie~

>

March 24, 2011

Hi .

Thanks for sharing what you and your daughter have to do. I actually asked my

husband to ask MIL next time if the neighborhood girl has anything that requires

a gluten free diet. I think the information that was passed along was called

the Paleo diet.

Thanks for the info and your thoughts!

Sharon (, 16 months old, systemic)

> >

> > Good morning, everyone.

> >

> > I hope that the day is going well thus far.

> >

> > I have something that I wanted to bounce off of folks here and see if anyone

has any insight to it or have heard of it.

> >

> > The backstory - apparently there is a neighbor in my MIL's neighborhood

whose daughter has JRA. Due to circumstances I don't quite know all the details

on, her father lost his job and consequently his health insurance. So she is

not under active treatment of an MD for her JRA. They are opting to take a more

holistic approach to treat her JRA, namely through dietary control. He

apparently talked with my MIL at length about this approach and gave her some

things to watch on youtube talking about the diet that they're using. She has

passed it along to us as a FYI and food for thought.

> >

> > Has anyone ever heard or researched anything about the dietary approach to

controlling JRA? I am in no way suggesting that my husband and I are going to

change 's treatment (far from it, I think it's what he needs). But I'm

curious if any of the more experienced folks here have heard of this.

> >

> > Thanks!

> > Sharon

> >

>

March 24, 2011

Hi, Sharon-

After twelve years of experience with the disease, here are my thoughts. I

co-chair a support group in our state so I know roughly 170 families with the

disease.

I don't believe that JRA can be cured by diet, but on the other hand, you are

what you eat. I am a heathy grown woman. If I eat right, I am even healthier.

I think some foods can increase inflammation in everyone and make us feel

crummier.

But on the other hand (here I go again), I have seen too many people go down the

gluten free route. They seem to spend a ton of money, and in many instances

they still are battling the disease the same as before, but who knows, it might

have even been worse with the gluten.

I have followed the literature for 12 years now. I have heard countless

naturopaths and nutritionists speak on the subject. It is my belief that we

should eat very wholesome food, close to the source. Try to avoid sugar and

processed food. Read all labels. If it has more than 5 ingredients, toss it.

The easiest way to eat healthy is to remain in your own kitchen at mealtime and

cook your own food. (without the help of processed food)

Personally, our family made the decision over 15 years ago to eat mainly

organic. We have had a large garden for twenty years. It is my way to be good

to my body and the earth. I am the first generation in my family not to have

been born on a farm, but I guess I still have those farming genes.

Your baby is so young. If I were you, I would just make sure that everything

that goes into his mouth is extremely healthy. Take care, (n, 22,

systemic)

On Mar 24, 2011, at 8:00 AM, sharon.peabody wrote:

> Good morning, everyone.

>

> I hope that the day is going well thus far.

>

> I have something that I wanted to bounce off of folks here and see if anyone

has any insight to it or have heard of it.

>

> The backstory - apparently there is a neighbor in my MIL's neighborhood whose

daughter has JRA. Due to circumstances I don't quite know all the details on,

her father lost his job and consequently his health insurance. So she is not

under active treatment of an MD for her JRA. They are opting to take a more

holistic approach to treat her JRA, namely through dietary control. He

apparently talked with my MIL at length about this approach and gave her some

things to watch on youtube talking about the diet that they're using. She has

passed it along to us as a FYI and food for thought.

>

> Has anyone ever heard or researched anything about the dietary approach to

controlling JRA? I am in no way suggesting that my husband and I are going to

change 's treatment (far from it, I think it's what he needs). But I'm

curious if any of the more experienced folks here have heard of this.

>

> Thanks!

> Sharon

>

March 24, 2011

Hi .

Thank you so much for the information and your thoughts!

Right now we try to get eating as healthy as we can. Sadly I am not a

capable gardener (nor is our lot/neighborhood overly conducive to a garden), but

I do try to make changes where I can. We are definitely organic dairy people

and blessfully our kids all eat pretty well when it comes to fruit and veggies -

our middle child will ask for broccoli for dinner at one of our favorite

restaurants over french fries. Yay! is a bit streaky in what he eats

from day to day but he does eat a good variety of fruits and veggies. My next

step is to try and work in the organic produce to see how we can manage that.

I'm sure I'll be dropping in with more questions.

Thanks again!

Sharon (, 16 months, systemic)

>

> > Good morning, everyone.

> >

> > I hope that the day is going well thus far.

> >

> > I have something that I wanted to bounce off of folks here and see if anyone

has any insight to it or have heard of it.

> >

> > The backstory - apparently there is a neighbor in my MIL's neighborhood

whose daughter has JRA. Due to circumstances I don't quite know all the details

on, her father lost his job and consequently his health insurance. So she is not

under active treatment of an MD for her JRA. They are opting to take a more

holistic approach to treat her JRA, namely through dietary control. He

apparently talked with my MIL at length about this approach and gave her some

things to watch on youtube talking about the diet that they're using. She has

passed it along to us as a FYI and food for thought.

> >

> > Has anyone ever heard or researched anything about the dietary approach to

controlling JRA? I am in no way suggesting that my husband and I are going to

change 's treatment (far from it, I think it's what he needs). But I'm

curious if any of the more experienced folks here have heard of this.

> >

> > Thanks!

> > Sharon

> >

>

March 24, 2011

Sharon, I think each person has a different response to both the meds and to

a more natural approach. I will share with you our story as a reference.

At the beginning of Zoe's kindergarten year, we saw that her knee was

swollen. She had been waking in the night a little more often with 'knee

pain' but it was the same as she had been dealing with since she was about

2.5 with no day time pain or stiffness, just the swelling. We did the

normal routine of starting with the pediatrician, to an orthopedist to an

MRI and meeting with the Rheumy, whom was convinced it was most likely Lyme

since we summer in the Northeast US, but got the diagnosis of JRA, right

knee only involved. Swelling but never a complaint of pain other than the

periodic night time wake up. At this time I was starting to talk with a

Naturopath about Zoe's twin sister's allergies & hypersensitivity to

preservatives and additives. I knew that she did a lot with auto immune

diseases and spoke with her about Zoe's diagnosis.

Since we were very early in the onset of the JRA and Zoe was having no pain

issues, I chose to not drain the knee or do the steroid injection that was

recommended by the Rheumy. I decided to work with the naturopath to do a

yeast detox and homeopathic therapy as treatment. (We were gluten free,

avoided foods that are likely to carry fungus and there was no sugar for

several months as part of the yeast detox. It was a hard program to do. )

Our doc was okay with my decision, discussed a little about past patients

that had tried the same and said as long as I was willing to still come in

and have Zoe checked, he would work with us on this. He understood my

decision. This was January.

We started our program in Early February and by Mid March at our follow up

with the Rheumy, Zoe showed no signs of swelling or inflammation. When we

went back in june, there was still no sign of any active arthritis and her

blood work was closer to that of a non arthritic child. We did not complete

the full 9-12 month program but made it to about the 6.5 month mark. I will

admit that summer's constantly changing schedule was too hard for me to

manage with a regimented schedule of herbal drinks and supplements and

homeopathy drops/pellets.

Zoe is now in third grade and has yet to have any inflammation in any

joints. We still visit the rheumy every 6 months and Zoe has her Naprosyn on

hand. She has a handful of " mechanical " strength issues that periodically

cause us concern but no joint involvement. Zoe has had two flares of

Uveitis, one at the end of First grade and one just this past Thanksgiving.

We get her eyes checked every 3 months and know that she is high risk for

uveitis, so will stay diligent, possibly for the rest of her life.

(And her sister is doing much better. We learned a lot about food

sensitivities and how processed foods really trigger emotional outbursts

that the girls just have no control over. We are mainly organic and fresh

foods now.)

I did a lot of research at the time about this before making this decision.

I have a girlfriend here in town that did a similar program with her

daughter but did it in concordance with traditional medical treatments as

her daughter had several joints involved, including her hands. Her daughter

is now in remission and hopefully will be able to stay that way for a long

time if not forever.

I know that a lot of information is thrust on us about how to handle this

disease. Many people just don't understand the impact it has on our

children. I am sure your mom means well. Take it all in as them wanting to

help, research what you wish to know more about but remember that you are

Mom and your gut will tell you what is best. And really, is eating

healthier with less processed foods going to hurt anyone? I think it might

be a great marriage with traditional medications that are getting the job

accomplished.

All my best,

Joann

Mom to Zoe, age 9, Pauci JRA & Uveitis

From: [mailto: ] On Behalf

Of sharon.peabody

Sent: Thursday, March 24, 2011 11:01 AM

Subject: Dietary Control of JRA?

Good morning, everyone.

I hope that the day is going well thus far.

I have something that I wanted to bounce off of folks here and see if anyone

has any insight to it or have heard of it.

The backstory - apparently there is a neighbor in my MIL's neighborhood

whose daughter has JRA. Due to circumstances I don't quite know all the

details on, her father lost his job and consequently his health insurance.

So she is not under active treatment of an MD for her JRA. They are opting

to take a more holistic approach to treat her JRA, namely through dietary

control. He apparently talked with my MIL at length about this approach and

gave her some things to watch on youtube talking about the diet that they're

using. She has passed it along to us as a FYI and food for thought.

Has anyone ever heard or researched anything about the dietary approach to

controlling JRA? I am in no way suggesting that my husband and I are going

to change 's treatment (far from it, I think it's what he needs). But

I'm curious if any of the more experienced folks here have heard of this.

Thanks!

Sharon

March 24, 2011

Hi Sharon,

For what its worth, my Dad is really pushing " natural " remedies as well for

K, now that we are looking to up the ante and add mtx to her treatment plan.

He wants us to take her to a holistic/natural dr. I'm not enthusiastic. I

don't want to mess with her eyes (like marie's Bradley, her uveitis is

her bigger problem).

I also feel very strongly that taking herbal supplements is not any

different than taking pharmaceuticals. The supplements are still drugs! And

sometimes with a lot less supervision/regulation than medication from a

pharmacy! The supplements are just " natural " as opposed to mixed in a lab.

Um, not that I have strong feelings or anything.....

That said, if there were dietary modifications that might help, I'd be