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RE: Lost attn: Dan

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Hi Dan,

We had a similar situation with my 12 year old son. The pediatric

rheumatologist at Children's Hospital was very hesitant diagnosing my son who

has active poly jra and was not treating him aggressively enough. He was also

very scattered during our appointments and not informative at all. I've spoken

with a few parents who had the same situation and they all recommended going to

U of M. I transferred there and found things changed dramatically! Please go

see the pediatric rheumatologist Dr. Barbara at U of M. She has made such

a huge difference. My son is feeling remarkably better and I see such a change

in his personality. The Methotrexate has been a Godsend. He is on the maximum

dose injections as well as Naproxen and Folic Acid and fish oil. His knee has

damage from all the years of being misdiagnosed without treatment (both of his

knees don't bend all the way).

Good luck with your daughter. I hope you get all the answers you need and the

help she deserves. JRA really robs them of their childhood...no child should

have to hurt like that! There's help and answers out there!!

( 12 poly jra)

From: danmanley47@...

Date: Wed, 9 Mar 2011 18:34:53 +0000

Subject: Lost

My family physician thinks my daughter has JRA.

She has gone from a happy go lucky athletic 13 year old, three weeks ago. To a

child who has so much pain in her joints she has trouble walking,opening a door,

holding a pencil or opening a bottle of water. She has chronic fatigue as well

and has missed many days of school.

We have had xrays, bone scan, blood tests ect.

I took her to Childrens Hospital in Detroit on Monday.

The Pediatric Rheumatologist examined her & said she has no arthritis

at all and can do nothing for her. Of course we are fustrated and angry. Amelia

is in so much pain she has trouble sleeping.

We have another appointment with another Pediatric Rheumatologist in two

weeks. We have tried motrin,advil,aleve,tylenol,naprosyn ect.

nothing works.

What do we do for her pain? We have two more weeks to wait to see another

doctor. In the meantime she suffers. Does anyone know what we can do?

Dan

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,

Thanks for your help, we do have her set up for an appointment at U of M, I do

appreciate your kind words.

Waiting two weeks is very hard on Amelia, we will find her some relief during

that time, somehow.

I am sorry to hear your story about your son. sharing your story helps much, we

know that my daughter has JRA

and we figured the MD at childrens hospital was wrong. Your message confirms it.

Thanks much

Dan

 

Lost

 

My family physician thinks my daughter has JRA.

She has gone from a happy go lucky athletic 13 year old, three weeks ago. To a

child who has so much pain in her joints she has trouble walking,opening a door,

holding a pencil or opening a bottle of water. She has chronic fatigue as well

and has missed many days of school.

We have had xrays, bone scan, blood tests ect.

I took her to Childrens Hospital in Detroit on Monday.

The Pediatric Rheumatologist examined her & said she has no arthritis

at all and can do nothing for her. Of course we are fustrated and angry. Amelia

is in so much pain she has trouble sleeping.

We have another appointment with another Pediatric Rheumatologist in two

weeks. We have tried motrin,advil,aleve,tylenol,naprosyn ect.

nothing works.

What do we do for her pain? We have two more weeks to wait to see another

doctor. In the meantime she suffers. Does anyone know what we can do?

Dan

                       

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