Re: REALLY FED UP.....

February 4, 2005

Janet - I am so sorry you still have no answers. First of all, and this

is just my opinion so take it how you will, if a dr would not call back

in a timely fashion, I would be looking for a new dr. Is this ped dr a

pediatrician or a ped rheumy? If I were you, I would be looking for a

rheumy at this point, preferably a ped one. My son presented the same as

your daughter, without the fevers. We did the x-ray route, a ct scan, no

break or injury could be found. Took us 7 months of seeing orthopedic

specialists until my ped said, " Take him to a rheumy " . She sent us to a

ped rheumy and she diagnosed in one office visit, before any blood

work test results. She knew by his symptoms. I highly recommend going to

a teaching hospital if possible. If you do not need a referral for

insurance purposes, find a rheumy and make an appointment. I did not

need any referral, as we have a PPO. You do not have to wait for some dr

to tell you when to go to a specialist. Luckily, the ped rheumy we went

to was in our plan, so I have only a $20 co-pay. My point is, if you

don't need a referral for your ins coverage, find a ped rheumy on your

own if your family dr does not recommend one. If this ped dr you are

waiting for is a rheumy, get to another one if you can. Remember, you

are the consumer, paying for this. You (and your child) deserve better

treatment than what you are receiving. If nothing else, a dr should call

you back. I can't remember where you are located, but find out if there

is a Shriners Hospital located near you. They offer great care, and seem

to be quite helpful to some here on the list. Good luck to you and I

hope your daughter feels better soon, Hugs, Michele (17,pauci &

spondy)

REALLY FED UP.....

Dear all,

I am fairly new here and have made some post and i have learned alot

here....seems like a great place for anyone with children with

arthritis. I am so frustrated at the fact that i have no answers as

of yet, for all i know i could be looking in the wrong

direction....i guess knowing may find me peace of mind. For you that

do not know my story, it all began with my daughter who is 11 years

old, by the first of dec, she complained of a sore ankle...the

exrays showed no sprain or breaks and they also checked her knees

too as the family dr is concerned because auto immune runs in my

family, myself included....he also ran blood work.....he booked an

appointment to update us on her results for the beginning of jan, in

the meantime, it went from a sore ankle to sore knees, fatigue and

low grade fevers. The results are, im told...the exrays looked fine

but she tested positive for connective tissue disease and refered

her to a peds dr. We go to the peds dr. and he checks her and said i

will check her for mono and thyroid and until i get those results im

not going any further. A few days after visiting the ped dr. she

became much sicker, the fevers were higher and so was the pain and

fatigue, she seems so sick to us. Called the peds dr, and of course

you get recordings, called the family dr, too busy to call

back...her fever shot to 105 took her to ER, they tested her blood

and said her white count was elevated, could be infection I HAVE NO

CLUE WHERE, AS THERE WAS NO SIGNS, put her on antibiotic....she did

not show improvement in a few days or when she completed the

antibiotic, slight improvement seem to start about 3 to 4 days after

she was done it...so now im thinking did she have infection or

flare!!!! Needless to say my family dr wasnt impressed to hear that

i had still not heard back from the ped dr and contacts him by fax

as they dont answer thier phone...they call to see what i want, told

her i want the results, okay she says will have ped call you, 3 days

later still no call....grrrrr. oh and ped dr says the connective

tissue disease positive test was a weak one, WHAT THE HECK DOES THAT

MEAN? My confusion is...can bad flares last only 2 to 3 weeks....now

her condition is...fatigue, somedays a knee will hurt, today it was

her ankle, and sometimes when she walks the ankle makes a clicking

noise, IS THAT NORMAL? WHAT IS CONSIDERED A LOW GRADE FEVER? DO YOUR

CHILDREN HAVE LOW GRADE SOMEDAYS AND OTHER DAYS HAVE NO FEVER? IT

HAS NOT MOVED TO ANY OTHER JOINTS EITHER. I have had arthritis with

dm most of my life but i cant seem to understand what she has, i

guess if i seen more joints flare or something it would help my

confusion. Im sorry to dump this on everyone here but i feel like i

cant stand another minute of them playing games with my daughters

health even though she seems better, and we live in a area where the

shortage of drs is so bad, you must be careful they dont tell you to

hit the road. Somedays i feel im going to explode with worry and

cant deal with it, and times i just try and keep my mind busy. Thank

god she is better than she was 2 weeks ago but she still is not her

energetic self. If anyone could shed some light on my concerns and

questions i would really appreciate it. I know no one here can give

me a diagnosis but i guess i just needed to release.....thanks for

any help you can offer

hugs.........janet

February 4, 2005

> Janet - I am so sorry you still have no answers. First of all, and

this

> is just my opinion so take it how you will, if a dr would not call

back

> in a timely fashion, I would be looking for a new dr. Is this ped

dr a

> pediatrician or a ped rheumy? If I were you, I would be looking

for a

> rheumy at this point, preferably a ped one. My son presented the

same as

> your daughter, without the fevers. We did the x-ray route, a ct

scan, no

> break or injury could be found. Took us 7 months of seeing

orthopedic

> specialists until my ped said, " Take him to a rheumy " . She sent us

to a

> ped rheumy and she diagnosed in one office visit, before any

blood

> work test results. She knew by his symptoms. I highly recommend

going to

> a teaching hospital if possible. If you do not need a referral for

> insurance purposes, find a rheumy and make an appointment. I did

not

> need any referral, as we have a PPO. You do not have to wait for

some dr

> to tell you when to go to a specialist. Luckily, the ped rheumy we

went

> to was in our plan, so I have only a $20 co-pay. My point is, if

you

> don't need a referral for your ins coverage, find a ped rheumy on

your

> own if your family dr does not recommend one. If this ped dr you

are

> waiting for is a rheumy, get to another one if you can. Remember,

you

> are the consumer, paying for this. You (and your child) deserve

better

> treatment than what you are receiving. If nothing else, a dr

should call

> you back. I can't remember where you are located, but find out if

there

> is a Shriners Hospital located near you. They offer great care,

and seem

> to be quite helpful to some here on the list. Good luck to you and

I

> hope your daughter feels better soon, Hugs, Michele

(17,pauci &

> spondy)

> Dear

Thank you so much for your imput, and i really appreciate your

opinion. I live in Ontario Canada, so we have health insurance so

that is not a problem at all, we are covered no matter what dr we

see, unfortunately the problem lyes with the shortage of drs....and

where i live you can not see a specialist without a referral, my

family dr referred us to this ped and he is not a ped rheumy,,,,and

unfortunately the only one around here that is left and another

silly thing is a family dr can refer my daughter to a rheumy but not

a ped rheumy, it has to be a ped dr. to refer you to a ped.

rheumy,.....just crazy eh? So my daughter goes back in 2 weeks to

the family dr, and that is when i will have to start with a rheumy,

as im sure he will refer her to one, ecspecially if i have not heard

anything more from the ped. As far as ped. rheumies around here,

they are not plentiful either, the closest is 2 1/2 hrs away, which

is fine but unless your child is really really bad, you will wait at

least 6 months to get in, that is why i may have to start with a reg

rheumy, which the one i have is excellent but due to retire, so im

hoping to at least get her into the one my sister goes to which is

also very good as well. This is why i get so frustrated with things,

my next move, if she were to flare and fever (if that is what it

was) again, like she was a couple of weeks ago, i will put her in

the car and drive the one hour and take her to emerg at the hospital

where my rheumy and my sisters work out of, that is about all i can

do. Once again, thank you so much for listening

hugs

janet aka momaof340

> REALLY FED UP.....

>

> Dear all,

> I am fairly new here and have made some post and i have learned

alot

> here....seems like a great place for anyone with children with

> arthritis. I am so frustrated at the fact that i have no answers

as

> of yet, for all i know i could be looking in the wrong

> direction....i guess knowing may find me peace of mind. For you

that

> do not know my story, it all began with my daughter who is 11

years

> old, by the first of dec, she complained of a sore ankle...the

> exrays showed no sprain or breaks and they also checked her knees

> too as the family dr is concerned because auto immune runs in my

> family, myself included....he also ran blood work.....he booked an

> appointment to update us on her results for the beginning of jan,

in

> the meantime, it went from a sore ankle to sore knees, fatigue and

> low grade fevers. The results are, im told...the exrays looked

fine

> but she tested positive for connective tissue disease and refered

> her to a peds dr. We go to the peds dr. and he checks her and said

i

> will check her for mono and thyroid and until i get those results

im

> not going any further. A few days after visiting the ped dr. she

> became much sicker, the fevers were higher and so was the pain and

> fatigue, she seems so sick to us. Called the peds dr, and of

course

> you get recordings, called the family dr, too busy to call

> back...her fever shot to 105 took her to ER, they tested her blood

> and said her white count was elevated, could be infection I HAVE

NO

> CLUE WHERE, AS THERE WAS NO SIGNS, put her on antibiotic....she

did

> not show improvement in a few days or when she completed the

> antibiotic, slight improvement seem to start about 3 to 4 days

after

> she was done it...so now im thinking did she have infection or

> flare!!!! Needless to say my family dr wasnt impressed to hear

that

> i had still not heard back from the ped dr and contacts him by fax

> as they dont answer thier phone...they call to see what i want,

told

> her i want the results, okay she says will have ped call you, 3

days

> later still no call....grrrrr. oh and ped dr says the connective

> tissue disease positive test was a weak one, WHAT THE HECK DOES

THAT

> MEAN? My confusion is...can bad flares last only 2 to 3

weeks....now

> her condition is...fatigue, somedays a knee will hurt, today it

was

> her ankle, and sometimes when she walks the ankle makes a clicking

> noise, IS THAT NORMAL? WHAT IS CONSIDERED A LOW GRADE FEVER? DO

YOUR

> CHILDREN HAVE LOW GRADE SOMEDAYS AND OTHER DAYS HAVE NO FEVER? IT

> HAS NOT MOVED TO ANY OTHER JOINTS EITHER. I have had arthritis

with

> dm most of my life but i cant seem to understand what she has, i

> guess if i seen more joints flare or something it would help my

> confusion. Im sorry to dump this on everyone here but i feel like

i

> cant stand another minute of them playing games with my daughters

> health even though she seems better, and we live in a area where

the

> shortage of drs is so bad, you must be careful they dont tell you

to

> hit the road. Somedays i feel im going to explode with worry and

> cant deal with it, and times i just try and keep my mind busy.

Thank

> god she is better than she was 2 weeks ago but she still is not

her

> energetic self. If anyone could shed some light on my concerns and

> questions i would really appreciate it. I know no one here can

give

> me a diagnosis but i guess i just needed to release.....thanks for

> any help you can offer

> hugs.........janet

>

February 4, 2005

Janet,

It sounds so, so frustrating for you and your family. There are so many

knowledgeable people on this site who will be able to help you. Let me see

if I understand your questions first, okay?

1. You want to know if bad flares can last 2-3 weeks?

2. Is it possible that this is a temporary infection and not a flare?

3. What does a weak connective tissue disease test result mean?

4. Does anyone recognize your daughter's symptoms?

I just wanted to help clarify the questions you were asking to make sure

that I read them correctly.

Good luck getting the help you need. I'm a newbie myself so unless I'm

really sure about something, I usually keep my mouth shut!

From: " janet " <janet3339@...>

Subject: REALLY FED UP.....