Not happy with doctor

January 9, 2009

So yesterday we saw Jordon's Dr.

For awhile now we have been feeling that he doesnt even care,

we go in and he stays with Jordon maybe 5min.

Yesterday we went into the examin room 5min before Jordon's appt. and

10min later the nurse came in and said that they didnt know where the

dr was that they had paged him and he hadnt called them back.

He finnaly came in the room 20min after our appt time. And said that

we were there to early...

i didnt comment that he was late.

We told him about jordon waking up in the middle of the night in pain

from his knees, told him of the morning stiffness and told him about

the knees swelling up. even in the school the nurses say he complains

at school and they lift up his pants and he's very swollen. Like today

we had to go pick up Jordon from school because he was in so much pain

and having trouble walking.

But he acts like its all in our heads or Jordon's head and not really

happening... like im imagining my son's knees and ankles swelling up..

and that jordon is just saying he is in pain but not really..

This is the way we are getting treated.

And then after a year and half of going to him he tells us that jordon

might not have JRA and that they could do a MRI to see for sure, but

that we probably didnt want to have jordon get one...

for 1 thing why wouldnt we want Jordon to get one and for another...

if he doesnt have JRA why has he been swelling up and haveing all this

pain and stiffness... and if there was a MRI to tell us if he does or

does not have JRA why didnt he tell us and have one done in the

beginning? We have had blood work done that this doctor said shows him

having JRA... So why say this now.

Im not sure what to do,

if it isnt JRA then what is making his knees and sometimes his ankles

swell up and be in pain?

And also , do you know of any other Rheumy's in SLC area? because

for one sure thing is that he needs a doctor that will not treat us

like we are crazy.

Either at PCMC or any University clinic of pediatrics?

, Bryon, Jordon 8, 7

January 9, 2009

Sorry to hear you are having such difficulty with the dr. Given the fact

that there is no real test for JRA, and diagnosis is generally made by

the symptoms, I just don't see how having an MRI would tell for sure. My

son had one, and it sure didn't say he had arthritis. It took a ped

rheumy examining him and evaluating all of his symptoms before a

definite diagnosis could be made. Your son sure sounds like he has many

of the hallmarks of the disease. Blood can point to inflammation, but

there is no marker in that blood work to say yes you have arthritis.

I cannot help you find a new dr in your area, but I can say that you are

right to question this dr and how you were treated. You are right to

find another dr to help your son. You may need to travel further, or

not, but don't give up. You are your son's advocate, the one who talks

for him. Keep educating yourself about the disease, write down what

happens to him as far as school and morning stiffness, etc. I am sure

someone will be able to steer you in the direction of a ped rheumy that

is more in tune with your son. Check out local university hospitals and

see if they have ped rheumy's on staff.

Hugs to you and your son. Your dr was wrong to treat you this way.

Remember, you are paying this person for their expertise. They have a

responsibility to the patient to work towards getting him pain free.

Michele ( 21, spondy)

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Sent: Friday, January 09, 2009 3:56 PM

Subject: Not happy with doctor