Re: Contradictory Informatio

[Guest guest]

Hi Melinda,

That's upsetting. After such a long wait, to come away from the appt

feeling invalidated and dissatisfied. I'd say you definitely have

legitimate concerns. And being the parent of a child who is not feeling

well, you'll also likely have an emotional response to this situation.

That's expected! You're looking out for her best interests.

I'd speak again to your daughter's pediatrician, the person who referred

you, and get their feedback about this. Especially to find out why, for

one, the mass that was definitely picked up by the ped. seems to have

been completely dismissed by the rheumy. Was the rash present when the

doctor saw Kate? Did she have any inflammation or loss of range of

motion? Did he have any explanation about why your daughter may have

been having these symptoms for the last several months? I'd ask the

pediatrician to call the rheumy, to find out more ~ doctor to doctor~

about this exam. And I'd try to get a second opinion from another

rheumatologist, too.

You're in land, right? Who did your daughter see? I just looked at

the Health Pages and there seem to be quite a few rheumatologists in

your state, including those who work with children. Not sure how far

away they are from where you live, though. You can find out about them

by searching at: http://www.thehealthpages.com/search/

Definitely keep the appt with the eye doctor, too. Make sure her eyes

don't have any inflammation or if they do, start treating it right away.

That's a very important consideration. I may have missed it but did you

recently see a gi specialist about the stomach complaints, too? What was

their consensus? A lot of times children with JRA do have stomach

problems but most often, they are a side effect of treatment with

NSAIDs. In systemic JRA, involved organs can become inflamed. This can

likely cause discomfort and other symptoms. Has your daughter been

prescribed any meds at all, at this stage? Over the counter NSAIDs can

have side effects, too. Fatigue is another factor that many children

with JRA can experience. When your daughter had her blood tests, was she

anemic?

I'm sorry, Melinda. More questions than answers, at this point. Don't

stop here. If Kate is not feeling well, you've got to find out why. Even

if it means finding a different doctor that will cooperate and

communicate better and understand your parental concerns. Please let us

know what happens.

Aloha,

Georgina

Mmyersetal@... wrote:

>

> Ok ...Kate ...my eight year old who has been waiting to see the Ped Rheumy

> for a month was seen today. I did not feel good at all about the visit. I

> need some insight as to whether I have legitimate concerns, or am just having

> an emotional response. Some history ...Kate presented in December with joint

> pain, headaches, and intermittent vomiting. All of this has gotten more

> noticeable as times goes on. Eventually, we added a positive ANA (1:640),

> chronic fatigue, swelling etc. Now, within the last week, she has a " knot " ,

> which the pediatrician identified as a " mass " on the top of her tibula, but

> deferred to the rheumatologist. And, she now has a rash, which we can't

> explain. The Dr. said that if she had joint pain and swelling, difficulty

> moving in the morning, etc., for more than a few months, that he would

> consider JRA. I tactfully explained that that was why she was here. And he

> said that he wasn't very concerned, he would see her in four months, and he

> gave her a referral to a Ped. Opthamologist. He claimed to not be able to

> feel the knot (which the pediatrician, coaches, and other parents all called

> " remarkable " , it is a little larger than a gumball). And...he said that

> stomach complaints, vomiting, fatigue, and headaches don't go along with JRA.

> Is this true? I left feeling blown off, and like he hadn't heard a word I

> said. Specifically, I explained that she had been having symptoms A, B, C, D,

> E since December, and he said if she starts having anything like A, B, C, D,

> etc., for more than a month ...to call. I had already said that! Any insights?

>

> Melinda Myers

[Guest guest]

Sounds like you should see another Dr. This one isn't listening to you.

Theresa

[Guest guest]

Dear Melinda:

Find a DR you like and LISTENS to you. You are the mother. You are in charge.

Also Headaches stomaches and fatigue are all relative to stress. Pain can

cause stress. SO find a news DR. Has anyone ruled out septic arthritis. Also

did she have a recent strep infection? Did the pediatrician do an xray?? She

needs a sed rate, and a C reactive protein. Also a CBC. Make sure you

pediatrician all test possible with JRA. Its no fun to restick children for

blood. Good Luck SHU

[Guest guest]

n has systemic JRA and at the beginning she had fatigue, headaches, and

stomachaches. She never vomited. Sometimes it can be up to a year after

the fevers that the arthritis appears. n doesn't have any swelling

now, but she has morning stiffness, and her fingers hurt her. Good luck and

keep pushing the doctor. Try another one if need be.

>From: Mmyersetal@...

>Reply-

>

>Subject: Contradictory Informatio

>Date: Tue, 29 May 2001 15:45:32 EDT

>

>Ok ...Kate ...my eight year old who has been waiting to see the Ped Rheumy

>for a month was seen today. I did not feel good at all about the visit. I

>need some insight as to whether I have legitimate concerns, or am just

>having

>an emotional response. Some history ...Kate presented in December with

>joint

>pain, headaches, and intermittent vomiting. All of this has gotten more

>noticeable as times goes on. Eventually, we added a positive ANA (1:640),

>chronic fatigue, swelling etc. Now, within the last week, she has a " knot " ,

>which the pediatrician identified as a " mass " on the top of her tibula, but

>deferred to the rheumatologist. And, she now has a rash, which we can't

>explain. The Dr. said that if she had joint pain and swelling, difficulty

>moving in the morning, etc., for more than a few months, that he would

>consider JRA. I tactfully explained that that was why she was here. And he

>said that he wasn't very concerned, he would see her in four months, and he

>gave her a referral to a Ped. Opthamologist. He claimed to not be able to

>feel the knot (which the pediatrician, coaches, and other parents all

>called

> " remarkable " , it is a little larger than a gumball). And...he said that

>stomach complaints, vomiting, fatigue, and headaches don't go along with

>JRA.

>Is this true? I left feeling blown off, and like he hadn't heard a word I

>said. Specifically, I explained that she had been having symptoms A, B, C,

>D,

>E since December, and he said if she starts having anything like A, B, C,

>D,

>etc., for more than a month ...to call. I had already said that! Any

>insights?

>

>Melinda Myers

>

>

>

[Guest guest]

Melinda......

Go see another Dr. Sounds like this one is " to busy to be bothered "

Marcie, s Mom

[Guest guest]

I guess you could say we were " lucky " that Jordan's JRA hit him so

hard and fast, that our ped had no choice than to put him in the

hospital until he could find out what was wrong. He went thru a week

of all kinds of tests, slowly eliminating different diseases until he

finally told us that everything was pointing to JRA. He isn't a ped

rheumy so he had to refer us to one out of the city (we don't have

one here), and that was a 2 month wait, fevers nightly (106+) and all

he was on was indomethacin. To make a long story short (real short!)

We went to 2 rheumy's before we finally got to the one we go to now

and Jordan is doing great! I wouldn't have taken him out of the

hospital until they had some kind of diagnosis, Jordan had no

symptoms that we knew of before hand, (fevers, rash etc) but our ped

is one that doesn't stop either until he knows what's up. Find

another doc and keep finding them until you get some answers!!

Don't give up and good luck!!

Lori & Jordan (5 yrs old systemic jra)

> Ok ...Kate ...my eight year old who has been waiting to see the Ped

Rheumy

> for a month was seen today. I did not feel good at all about the

visit. I

> need some insight as to whether I have legitimate concerns, or am

just having

> an emotional response. Some history ...Kate presented in December

with joint

> pain, headaches, and intermittent vomiting. All of this has gotten

more

> noticeable as times goes on. Eventually, we added a positive ANA

(1:640),

> chronic fatigue, swelling etc. Now, within the last week, she has

a " knot " ,

> which the pediatrician identified as a " mass " on the top of her

tibula, but

> deferred to the rheumatologist. And, she now has a rash, which we

can't

> explain. The Dr. said that if she had joint pain and swelling,

difficulty

> moving in the morning, etc., for more than a few months, that he

would

> consider JRA. I tactfully explained that that was why she was here.

And he

> said that he wasn't very concerned, he would see her in four

months, and he

> gave her a referral to a Ped. Opthamologist. He claimed to not be

able to

> feel the knot (which the pediatrician, coaches, and other parents

all called

> " remarkable " , it is a little larger than a gumball). And...he said

that

> stomach complaints, vomiting, fatigue, and headaches don't go along

with JRA.

> Is this true? I left feeling blown off, and like he hadn't heard a

word I

> said. Specifically, I explained that she had been having symptoms

A, B, C, D,

> E since December, and he said if she starts having anything like A,

B, C, D,

> etc., for more than a month ...to call. I had already said that!

Any insights?

>

> Melinda Myers

>

>

>

[Guest guest]

Melinda,

I agree with all the others who say to find someone else. You need

someone who will listen and take your concerns seriously. This is

very frustrating and can become somewhat emotional, especially

because you are dealing with the health of " your " child, not his.

They sometimes tend to forget that and you don't need that at a time

like this.

Speaking from experience, we have seen numerous doctors (including

over 5 Rheumatologists) and several Infectious Disease docs, etc.

The good ones will tell you to get a second opinion and they will

also listen. We have been dealing with Kelli's problems for over 4-

1/2 years and still don't have a diagnosis, but I am very thankful

that we have a Ped. Rheumy that will listen, take our concerns

seriously, and also who has told us that he will not give up on Kelli

until he puts this whole puzzle together.

Hang in there.

Angie

> Ok ...Kate ...my eight year old who has been waiting to see the Ped

Rheumy

> for a month was seen today. I did not feel good at all about the

visit. I

> need some insight as to whether I have legitimate concerns, or am

just having

> an emotional response. Some history ...Kate presented in December

with joint

> pain, headaches, and intermittent vomiting. All of this has gotten

more

> noticeable as times goes on. Eventually, we added a positive ANA

(1:640),

> chronic fatigue, swelling etc. Now, within the last week, she has

a " knot " ,

> which the pediatrician identified as a " mass " on the top of her

tibula, but

> deferred to the rheumatologist. And, she now has a rash, which we

can't

> explain. The Dr. said that if she had joint pain and swelling,

difficulty

> moving in the morning, etc., for more than a few months, that he

would

> consider JRA. I tactfully explained that that was why she was here.

And he

> said that he wasn't very concerned, he would see her in four

months, and he

> gave her a referral to a Ped. Opthamologist. He claimed to not be

able to

> feel the knot (which the pediatrician, coaches, and other parents

all called

> " remarkable " , it is a little larger than a gumball). And...he said

that

> stomach complaints, vomiting, fatigue, and headaches don't go along

with JRA.

> Is this true? I left feeling blown off, and like he hadn't heard a

word I

> said. Specifically, I explained that she had been having symptoms

A, B, C, D,

> E since December, and he said if she starts having anything like A,

B, C, D,

> etc., for more than a month ...to call. I had already said that!

Any insights?

>

> Melinda Myers

>

>

>

[Guest guest]

Names would be great, thanks!

Melinda

[Guest guest]

Hi Melinda- I would not depened on one doctor's opinion. I would suggest

you see another pediatric rhuematologist. Try to get an appointment w/

children's hospital. They have sattelite offices in land. If you need

doctor names let me know. Good luck....

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[Guest guest]

The only thing you can do when you feel unsure of one dr. is to get the

opinion of another. It's so scary and frustrating when you're child is sick

and the person you need so desperately to trust makes you feel alone and

uncertain. I am also a nurse and witness dr.'s say and do stupid things all

the time...they are human and " practicing " an art. I also have met some

wonderful, competent, and caring dr.'s. We switched from a rheum. here in

Phila. to one in Baltimore because we just didn't feel like information was

being shared that we needed to know. Just be persistent and remember that

going to medical school does not make them better than you, in spite of the

fact that many of them do behave that way. good luck, Annie

[Guest guest]

Thank you for stating this fact. I recently experienced a horrible ordeal

wiht my daughters ped when she was in the hospital two weeks ago with her

first bout of this (what ever it is). She did not share any information with

us, would not hear our concerns and brought in specialists without even

telling us. When a nuerologist comes to your room and you dont know why your

child cant walk, horrible things go through your mind. The next day I brought

on a ped I knew was very competent and had a fantastic bedside manner. She

called us over the weekend, even before the insurance covered us and let us

know if we needed anything.

[Guest guest]

GREAT , I'm glad to hear that, it just goes to prove, the BIGGER

title, doesn't make the better M.D. No Doctor has the right to exclude

you from, full disclosure of your childs' course of care, treatment and

condition.