question for the experienced parents out there

[Guest guest]

Hi all

I have an 11 year old with JIA, on humira, meth and sometimes other drugs as

well depending on flare ups.

My older daughter (15) is also in process of being diagnosed!!

The girls are constantly not feeling well, even on the meds, aches, stomach

aches, headaches and rashes or blotches. Nothing like strep that requires

intervention just constantly minor stuff- that all adds up.

My question is like this

Based on tried and true experience, any suggestions for

activities or diet that help with all this pain or make it worse.

I hear swimming suggested, keeping off white flour and sugar, certain spices-

but I would rather hear from you guys, the parents who have tried and found

these things to help or not-before I drive my girls crazy on top of everything

else taking away their favorite foods or activities.

Thanks

Mindy

[Guest guest]

We have let n do whatever activity she wanted to do. If she started to

hurt, she would stop. She high jumped in high school, ran cross country one

year, and she skis and snowboards. Does she do these things as a normal child

would? Like her sister two years younger? No, but she does what her body will

allow her to do. We let her go to college in another state. We let her do this

only 16 months after we almost lost her to a complication of her systemic jra.

We arranged for an emergency doc in that state in case that complication

happened again.

In regards to food, it is my belief that you are what you eat. I started canning

a lot of food when n was diagnosed. We were already eating organic when

n got sick, but I changed even more how we ate at that time. We eat very

little to no processed food. I cook from scratch. We have a large garden. We eat

in moderation. We do eat sweets, but it is usually homemade cookies or a cake. I

have never allowed pop in the house. It is water or milk. The kids learned how

to read food labels at a young age. I am a big Pollan fan.

n has had systemic jra for the last twelve years. She has never been off

medication, so yes, she has aches and pains. She is empowered though. She has

worked thru college and will graduate next month with a BS in Civil Engineering.

She is looking for a job, and if she can't land one, she will go to grad school

to get a Masters in engineering. Our children are tough and resilient. They can

accomplish so much. They are such a blessing to each and everyone of us . (

n,22, systemic)

Sent from my iPhone

On May 8, 2011, at 5:17 AM, " mindy " <mindycaplan7@...> wrote:

> Hi all

> I have an 11 year old with JIA, on humira, meth and sometimes other drugs as

well depending on flare ups.

> My older daughter (15) is also in process of being diagnosed!!

>

> The girls are constantly not feeling well, even on the meds, aches, stomach

aches, headaches and rashes or blotches. Nothing like strep that requires

intervention just constantly minor stuff- that all adds up.

>

> My question is like this

> Based on tried and true experience, any suggestions for

> activities or diet that help with all this pain or make it worse.

>

> I hear swimming suggested, keeping off white flour and sugar, certain spices-

but I would rather hear from you guys, the parents who have tried and found

these things to help or not-before I drive my girls crazy on top of everything

else taking away their favorite foods or activities.

>

> Thanks

>

> Mindy

>

>

[Guest guest]

Hi Mindy,

My daugher felt a great relief when we switched her to a  gluteen free diet and

consume only an organic milk products. I can tell you that she gets a leg or

hand pain  after couple days everytime if she eat a regular pizza or white

bread. She isnow 8 years old and she doesn ot mind to  be in a gluteen free

diet, specially nowadays a super market is full of gluten free products.

Good luck,

Tolkyn

________________________________

From: mindy <mindycaplan7@...>

Sent: Sun, May 8, 2011 8:17:17 AM

Subject: question for the experienced parents out there

 

Hi all

I have an 11 year old with JIA, on humira, meth and sometimes other drugs as

well depending on flare ups.

My older daughter (15) is also in process of being diagnosed!!

The girls are constantly not feeling well, even on the meds, aches, stomach

aches, headaches and rashes or blotches. Nothing like strep that requires

intervention just constantly minor stuff- that all adds up.

My question is like this

Based on tried and true experience, any suggestions for

activities or diet that help with all this pain or make it worse.

I hear swimming suggested, keeping off white flour and sugar, certain spices-

but I would rather hear from you guys, the parents who have tried and found

these things to help or not-before I drive my girls crazy on top of everything

else taking away their favorite foods or activities.

Thanks

Mindy