Daughter diagnosed with RA

[Guest guest]

Hi,

My 17 year old daughter was recently diagnosed with Rheumatoid Artrhitis. She

is a

soccer player. Her symptoms are pain/swelling in 2 or 3 (depending on the day)

of the

knuckle joints on her right hand, her right wrist (a couple ganglion-looking

things with

pain), and pain in her right foot.

Bloodwork is all negative thus far. We heard two different takes on the x-rays

of her right

hand (one says negative, the other doc says there may be visible bone erosion in

the

hand). MRI showed swelling in the soft tissue of of the bone and some cysts (I

think this is

correct).

We have an appointment with a pediatric rheumatologist in Philly scheduled in

about

three weeks. My daughter began taking Nabumetone about two-three weeks ago. So

far,

her inflammation seems unaffected by it -- better some days than others, but

it's there

every day (a little worse in her foot these last couple days).

The first rheumatologist expressed concern for an aggressive form, but now she's

not

sure. She recommended giving up soccer, which didn't go over too well with my

daughter.

The doc relented, thinking it would be okay at least until we see what's up with

the other

doctor.

I'm simply reaching out for any guidance anyone might be able to offer -- what

to ask,

what to look for, what nutritional/alternative treatments there are, etc.

Anything anyone

has to offer would be greatly appreciated.

What has struck me about this disease is that the only thing wrong is the body

thinking

there is something wrong (if I understand the autoimmune explanation correctly).

By her

body thinking something is wrong, it takes action that then makes something

wrong. A

communication breakdown is at the root of so much disease.

Anyway...thanks for taking the time to read and/or respond.

God bless you

Lee

[Guest guest]

Im no kid, but all my tests were negative also. the body is probly trying to

fight off something and they just dont have a test for it. I did a round of

strong (dangerous) drugs and it made me worse. Now I do ONE antibiotic a day and

feel 90% better!!!! I found a DR to test for mycoplasma and chlamydia

infections and put me on minicycline, I am very pleased so far. I ride horses

(not alot) and last year i couldnt put a saddle on one, couldnt brush one, and

couldnt even get my foot into a stirrup to ride one, This year Im riding and

brushing again! I was out in the yard working all week, weeding (with my hands)

and digging holes for a whole new fruit orchard!!!!! yeah!!! try asking for

anitbiotics for your daughter. People on this list can help you find a DR who

will do it. Kathy

[Guest guest]

Thank you all for your help and advice...and encouragement.

Having had activities temporarily taken from me due to illness of another

variety, I can still

only imagine the joy you must be experiencing doing your gardening and such.

We began by taking our daughter to an orthopedist who then sent us to our first

rheumatologist. Upon the first meeting and the probably RA diagnosis, my wife

and I

asked that our daughter be tested for Lyme's, which was kind of pooh pooh'ed. I

have

some experience in this myself and know that diagnosing Lymes is as much an art

as a

science -- which I'm beginning to see is the same for RA.

Since the rheumatologist dealt with adults, we have decided to go to a pediatric

rheumatologist at St. 's in Philly.

I'm not sure if we are doing our daughter any favors by allowing her to continue

playing

soccer. Her hand and foot have pain, but she doesn't want to quit (obviously).

Are we

risking permanent damage by allowing her to play (at least until we can see the

pediatric

specialist in three weeks)?

Thanks again so much and God bless you all.

Lee

>

> Im no kid, but all my tests were negative also. the body is probly trying to

fight off

something and they just dont have a test for it. I did a round of strong

(dangerous) drugs

and it made me worse. Now I do ONE antibiotic a day and feel 90% better!!!! I

found a DR

to test for mycoplasma and chlamydia infections and put me on minicycline, I am

very

pleased so far. I ride horses (not alot) and last year i couldnt put a saddle on

one, couldnt

brush one, and couldnt even get my foot into a stirrup to ride one, This year Im

riding and

brushing again! I was out in the yard working all week, weeding (with my hands)

and

digging holes for a whole new fruit orchard!!!!! yeah!!! try asking for

anitbiotics for your

daughter. People on this list can help you find a DR who will do it. Kathy

>

>

[Guest guest]

Hi Lee,

My Daughter had a teammate who was finally diagnosed with lyme disease. She

did play field hockey while she was still undiagnosed but sat out or took it

easy when she was feeing bad which became more the norm than not for her.

The good news is that with treatment she is back to playing as well as ever

but her mom was ripping her hair out trying to get a proper diagnosis.

I think it really depends on how honest your daughter will be. If you think

she will take it easy if she's not feeling well I would probably let her

play if she's up to it. If she's the kind that would keep coming at you with

a broken leg, a dislocated shoulder and still run right through you without

so much as a complaint I'd think twice!

Best Wishes,

Dee

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of power2thefaint

Sent: Sunday, March 30, 2008 3:59 PM

rheumatic

Subject: rheumatic Re:Daughter diagnosed with RA

Thank you all for your help and advice...and encouragement.

Having had activities temporarily taken from me due to illness of another

variety, I can still

only imagine the joy you must be experiencing doing your gardening and such.

We began by taking our daughter to an orthopedist who then sent us to our

first

rheumatologist. Upon the first meeting and the probably RA diagnosis, my

wife and I

asked that our daughter be tested for Lyme's, which was kind of pooh

pooh'ed. I have

some experience in this myself and know that diagnosing Lymes is as much an

art as a

science -- which I'm beginning to see is the same for RA.

Since the rheumatologist dealt with adults, we have decided to go to a

pediatric

rheumatologist at St. 's in Philly.

I'm not sure if we are doing our daughter any favors by allowing her to

continue playing

soccer. Her hand and foot have pain, but she doesn't want to quit

(obviously). Are we

risking permanent damage by allowing her to play (at least until we can see

the pediatric

specialist in three weeks)?

Thanks again so much and God bless you all.

Lee

>

> Im no kid, but all my tests were negative also. the body is probly trying

to fight off

something and they just dont have a test for it. I did a round of strong

(dangerous) drugs

and it made me worse. Now I do ONE antibiotic a day and feel 90% better!!!!

I found a DR

to test for mycoplasma and chlamydia infections and put me on minicycline, I

am very

pleased so far. I ride horses (not alot) and last year i couldnt put a

saddle on one, couldnt

brush one, and couldnt even get my foot into a stirrup to ride one, This

year Im riding and

brushing again! I was out in the yard working all week, weeding (with my

hands) and

digging holes for a whole new fruit orchard!!!!! yeah!!! try asking for

anitbiotics for your

daughter. People on this list can help you find a DR who will do it. Kathy

>

>