Re: Really Angry and ready to take action

July 10, 2001

Understanding your frustration. Our daughter Lacey not yet diagnosed with

JRA, but we believe she might have it. We also believe she may have gotten it

from a tick bite. We have been battling with her dr.'s for three months

trying to explain to them we see things happening to our daughter that were

not there three months ago. Last Thursday we thought we had the confirmation

that we needed when we got her lab report back from CDC and her titer for

Erlichiosis was 512. We took it to her primary who in turned told me the test

was wrong and that Lacey has learned to skip. If she's skipping she hasn't

stopped since she was diagnosed with Toxic Synovitis. He didn't begin to

believe me until I called CDC the following day to prove the accuracy of the

test and got our State Epidemiologist involved. I was so angry with this

doctor, it makes me sick to think someone who looks at your child for a few

minutes knows everything about them taking nothing you say into consideration.

The doctor believes my husband and I are angry well, when you have to deal

with someone who is uniformed and won't listen to you or even bother to look

over the lab reports it tends to make you very angry.

July 10, 2001

If you are not happy with his diagnosis...seek another doctor...it is your

right as a parent! Don't blame you I would be angry also...good luck

karen

July 10, 2001

, Lora here, 's mom, systemic, age seven. Yes, we had so

many problems. We were shuttled from her pediatrician, who felt she had lime

disease to an infectious disease dr. who even tested her for HIV, because

along with her flares her immune system was supressed and she had a staph

infection in her throat and thrush ongoing, it wasn't until her rash made

itself known (still's rash) and her right ankle became severly swollen that

they began blood work to eventually reveal that she had 7 of the 9 crteria

for making a firm diagnosis. This was a total of 18 months of us not knowing

or treating this disease. It was horrible. My heart goes out to you. Let me

know if you need further info about some of the diagnostic tests that were

done and I will look back at her records to help in any way I can. You will

get through this time but not without getting frustrated with at least one

dr. They are really just " practicing medicine " Lora

July 10, 2001

,

Oh how well I know and understand the frustration you are going thru. My

daughter, who will be in 5 in August, has been having numerous problems

since 3 months of age, one of the worst being 105 to 107 fevers every 21 to

25 days like clockwork for almost 5 years now. She also has joint pain,

swelling and redness, at times unable to use fingers, legs, feet, arms,

wrists, etc., horrendous mouth sores (she has had 8 huge ones in the last 2

weeks so bad that she stopped eating), rashes (Ped. Rheumy described as

Still's Rash as seen by her in the office (lucky for us LOL!!)), swollen

lymph nodes, enlarged spleen, sed rates in excess of 130 and CRP's in excess

of 24.2, etc., etc. We have gone to too many doctors to list, she currently

sees a Ped. Rheumy, and again, going on 5 years, and we still don't have a

diagnosis.

Oh she has been hospitalized more times than I care to count, we have racked

up more than $100,000 in medical bills, she has had 1 major and 1 minor

surgery, CAT scans, Bone Scans, x-rays, more blood drawn than I ever thought

possible from such a wee one, more catheterized urine specimens than I ever

care to have in my lifetime, and we have sought ought more second opinions

than 's Little Liver Pills. We have tried numerous medications,

including and currently on Prednisone among numerous others, to no avail.

Her DNA is even at the National Institute of Health in search of anything

that might fit her and she still seems to be the medical phenomenon of the

Century LOL. Unfortunately, it is the roughest on the Mom who has to live

with this day in and day out.

Sometimes you just want to scream at them to just tell you what it is and

stop jacking around. You know if it was their child, they would feel the

same way.

Hang in there!!!! We feel your pain.

Angie

Really Angry and ready to take action

>We went to the Rheum today and he told us because Clarice's tests all came

>back normal he believes it was GI oriented. WHAT! Ok someone explain to me

>how GERD makes a child completely unable to stand for 8 days and still

>suffers swelling issues in her knees, ankles and feet. This is GI????

>ANyways. Since he did not see her go through this he cant diagnos it and so

>he will see her in the future if need be. Is anyone sensing my

>sarcasim....Please excuse me, I am seriously T'd off. Does he not know how

>to read her hospital records from the other doctor. I cant not believe this

>man.

>

>He doesnt know why Clarice has pain, and as far as I could tell, since he

>couldnt figure it out he is passing the buck. I am so tired of this whole

>thing! I called a holistic person today who comes highly recommended and

she

>made some very valid points and I think she maybe able to help us out. I

just

>hope we can get this all straightened out. She thinks Clarice's problems is

>allergies and we are going to try a very strict diet on top of some

>supplements to see if this makes any difference. I just cant stand by and

>watch her limp from day to day and have these doctors act as if it is of no

>concern to them. I feel I need to take some action here. I am doing some

>serious research on herbal remedies and will discuss the pluses and minuses

>with our physician as well before trying anything with Clarice. I know some

>herbs can be dangerous for children.

>

>Well Thanks to all of you who read my ranting and raving. I needed to vent.

>Again. thanks. Oh one question. Has anyone had this sort of trouble getting

>there diagnosis. Why is it obivious to us, her ped and the neurologist that

>it is JRA but not this Rhuem???

>

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July 11, 2001

I just cant understand why some of these doctors are so decensitized to the

parents emotions. Of course you and your husband are angry. Wouldnt they be

if no one could diagnos there child. They only see a small part of what we

parents are going through. They really have no idea how hard it is to care

for a child in pain day in and day out. They dont know the heart ache and

sometimes the guilt we feel. How tired we are of explaining to others and

family what is going on and it is even harder when there is no diagnosis.

They dont realize it takes a very strong persistent parent to care for a

special needs child. We have to be assertive or we are ignored.

July 11, 2001

I also agree with what you said. Tabitha has a surgeon who did her knee and

hips replacement..well when we see him..I may as well be invisible! I can ask

a question and he answers by telling tabitha..it is like excuse me..some can

be so arrogant! I am grateful though that the jra drs we have had all have a

bedside manner.

karen

July 11, 2001

You know, my daughter's surgeon does the same thing; but I am actually

thankful for it.....Her surgeon talks to her about the surgery, the pro and

cons. If I have a question, it is generally a question that should be

prompted by my daughter (who is 14) but may have been forgotten (How many

times have you gone to the doctor and forgot a question or two). The

doctors feel (and I whole heartily agree) that at some point the child needs

to take control of their lives. They have to make decisions that are going

to affect their quality of life. These decisions need to be informed....who

better to give them (the kids) the straight dope but the doctors. Until

she is 18 I still have veto power; but I would much rather pull tandem with

my child then against her. If I really felt the need to veto; I believe I

would ask the doctor to recommend someone for a second opinion so my

daughter and I could both see if there were different options.

Right now she is contemplating another elbow surgery. The first one was

not the success that she had anticipated; but she also knew it might not fix

it all too. We see the surgeon in another month, during which time she is

making a list of questions that she wants to ask. (This surgery is much

more involved than the first.)...

Because she is also 14 I am insisting that although I am there; she is the

patient and they (her ped rheumy) need to discuss the progress of her

disease---(controlled or uncontrolled) with her. Actually I really don't

have to insist too hard as this appears to be something they highly believe

in too.

You know what......it takes some of the stress off too. You don't realize

how much stress it takes to make quality of life decisions for someone other

than yourself until some of that responsibility is lifted.

Just my 02 cents

Sharon and Meghann

JRA and PRS

Re: Really Angry and ready to take action

> I also agree with what you said. Tabitha has a surgeon who did her knee

and

> hips replacement..well when we see him..I may as well be invisible! I can

ask

> a question and he answers by telling tabitha..it is like excuse me..some

can

> be so arrogant! I am grateful though that the jra drs we have had all have

a

> bedside manner.

> karen

>

> To manage your subscription settings, please visit:

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>

July 12, 2001

BIGGER TONGUE depressers! thats the answer, at least thats what I tell my

doctor, just before they call the, tailer to fit me for a nice new suit

coat. But you know, white just isn't my color. Blue it matches my eyes!

July 12, 2001

Sharon - Have to say, I agree with you. When was giving us a hard time

about taking the meds, I explained this to the dr. She sat and spoke to him

directly about why its important and how he needs to be in charge of taking

those at his age. When asked how he's doing, I let him answer first, then I

throw in my observations. It gives him, I think, some control and

responsibility over his body. He is 14 and in a very short time, he'll be

wanting to make all of his own decsions. I feel if we start now slowly

letting him make some with our guidance (while he will still listen to

us!)perhaps when he's older he'll make good ones. Plus, he'll be better

informed about this condition he will live with the rest of his life - in

one way or another.

Michele