Re: small vent

[Guest guest]

Misty,

I would be upset also if 's dr did that too. Don't they have a step

in for this doctor if he can't be there for some reason? At least if

's dr isn't there he does have a assistant to take those who have

appointments. I would go to the Director of physicians at that Hospital and ask

them about

it. When I seen this doctor again I would let him have a peice of my mind.

When you make a Appointment tell them your not going to change it SO if

they have to reschedule let them know not to call you since you have to take

time

off and you live far away from them. You shouldn't have to put your time on

hold for them.

Robbin

[Guest guest]

Misty,

did you in get in contact with Youth Bridge? I am so sorry that I just now got

back with you. I have been so busy with the holidays and all and 's JRA

and we have several other kids and now they are running test on me they think I

might have MS, so things have been out of sort here.

Who are you seeing in St. Louis? Is it at Children's Hospital?

Alesha

7

misty_o_c <misty_o_c@...> wrote:

First off, I know drs are people too and I know situations come up

that cannot be predicted but I am getting sick and tired of changed

appointments!!!! I think a good half of 's appointments with

his rheumy have been rescheduled. I have to ask for days off weeks

in advance and it's a real pain for all involved to have to change

things yet again. At one point this summer, they even had us waiting

each Tuesday for a phone call to know if he could get in to se the

dr on Thursday. Which meant at work that I had every Thursday off

just in case and when we did go, they had to have someone cover my

Friday and Wednesday shifts (Wednesday so I could do the ordering I

usually do on Fridays. Add to that the fact that we have to travel

down to St Louis and spend the night, because long trips make

hurt. We tried doing it in one day and he couldn't walk for

3 days afterwards. This means 2 days off work for me and if we can't

find a sitter, the older kids miss school. Plus we have to schedule

accomodations, though at least we have hopefully gotten to where we

won't have to pay for a hotel room each time.

The point of all this is that they have rescheduled 's

appointment yet again. Argh! The dr seemed adament at his last

appointment that we keep this next appointment, as just

started mtx. We got his first blood tests for it done today, 2 weeks

after starting. His appointment was supposed to be Jan 6, right

after his 4th dose. Now, they put it at Jan 20, when he'll have had

6 doses if the labs come back ok. Sorry this is so long, but I'm

rather frustrated at all this switching around.

Misty & (6, systemic)

[Guest guest]

Hi Misty,

I can see why you would be so very frustrated with all of the

cancelled appointments. We are in the same boat as you as far as the

start of mtx. My daughter will be getting her third dose tomorrow.

We are getting the lab work done today and then again in two weeks.

Our rheumy has never even seen Aundrea in a flare. We have visits

usually every 3-6 months and then this Nov. when she flared she just

ordered the pred over the phone and then when she flared again she

managed it over the phone by ordering the mtx.

Aundrea is suppose to be seen the end of Jan. and most likely will

have the flare under control again.

At first I thought this was crazy to be ordering these strong drugs

without even seeing Aundrea. But then I realized by seeing her

nothing would really change.

I do get copies of all of her lab work so at least I can stay on top

of everything.

How is doing on the MTX? What dose is he taking. Is he on

other meds as well? I sure hope that this will work for him.

I wonder if the doctors office is aware of all of the transportation,

work and child care issues that you must face in order to keep

appointments. If they aren't you should definately let them know

what an imposition this is for you to have appts cancelled.

(drea 9 systemic)-

-- In , " misty_o_c " <misty_o_c@h...> wrote:

>

> First off, I know drs are people too and I know situations come up

> that cannot be predicted but I am getting sick and tired of changed

> appointments!!!! I think a good half of 's appointments with

> his rheumy have been rescheduled. I have to ask for days off weeks

> in advance and it's a real pain for all involved to have to change

> things yet again. At one point this summer, they even had us waiting

> each Tuesday for a phone call to know if he could get in to se the

> dr on Thursday. Which meant at work that I had every Thursday off

> just in case and when we did go, they had to have someone cover my

> Friday and Wednesday shifts (Wednesday so I could do the ordering I

> usually do on Fridays. Add to that the fact that we have to travel

> down to St Louis and spend the night, because long trips make

> hurt. We tried doing it in one day and he couldn't walk for

> 3 days afterwards. This means 2 days off work for me and if we can't

> find a sitter, the older kids miss school. Plus we have to schedule

> accomodations, though at least we have hopefully gotten to where we

> won't have to pay for a hotel room each time.

> The point of all this is that they have rescheduled 's

> appointment yet again. Argh! The dr seemed adament at his last

> appointment that we keep this next appointment, as just

> started mtx. We got his first blood tests for it done today, 2 weeks

> after starting. His appointment was supposed to be Jan 6, right

> after his 4th dose. Now, they put it at Jan 20, when he'll have had

> 6 doses if the labs come back ok. Sorry this is so long, but I'm

> rather frustrated at all this switching around.

>

> Misty & (6, systemic)

[Guest guest]

I don't blame you for being angry. I would let them know of the huge

inconvenience it is for you. I would even be tempted to find a new ped

rheumy but that may not be possible for you. I would talk directly to

the dr and not just his nurse, or office staff. You have a right to be

seen in a timely manner and the dr should respond to your problem. JMHO,

Michele ( 17, pauci & spondy)

small vent

First off, I know drs are people too and I know situations come up

that cannot be predicted but I am getting sick and tired of changed

appointments!!!! I think a good half of 's appointments with

his rheumy have been rescheduled. I have to ask for days off weeks

in advance and it's a real pain for all involved to have to change

things yet again. At one point this summer, they even had us waiting

each Tuesday for a phone call to know if he could get in to se the

dr on Thursday. Which meant at work that I had every Thursday off

just in case and when we did go, they had to have someone cover my

Friday and Wednesday shifts (Wednesday so I could do the ordering I

usually do on Fridays. Add to that the fact that we have to travel

down to St Louis and spend the night, because long trips make

hurt. We tried doing it in one day and he couldn't walk for

3 days afterwards. This means 2 days off work for me and if we can't

find a sitter, the older kids miss school. Plus we have to schedule

accomodations, though at least we have hopefully gotten to where we

won't have to pay for a hotel room each time.

The point of all this is that they have rescheduled 's

appointment yet again. Argh! The dr seemed adament at his last

appointment that we keep this next appointment, as just

started mtx. We got his first blood tests for it done today, 2 weeks

after starting. His appointment was supposed to be Jan 6, right

after his 4th dose. Now, they put it at Jan 20, when he'll have had

6 doses if the labs come back ok. Sorry this is so long, but I'm

rather frustrated at all this switching around.

Misty & (6, systemic)

[Guest guest]

-Misty,

You have EVERY right to be upset and frustated. You and

deserved better than this from a doctor, no matter how busy

or " important " they are.

This is totally unacceptable. I suppose changing to a different

doctor is out of the question??? I think I would be inclined to take

my time and write a letter directly to the doctor voicing your

concerns and letting him know exactly how much of an disruption the

cancelled appts are to you, AND the rest of your family.

With a letter you are more able to voice ALL concerns in the way you

want to, rather than trying to talk on the phone and perhaps not

being able to get your point over. This doctor really needs to

understand the hardships this is causing you. Perhaps then he can

schedule your appts at a time where they WONT get cancelled. I was

very upset reading that this was happening to you.

I have never had an appt cancelled in 18 months. We are seen on time

every time except once when the doc was stuck at the hospital ( next

door) with an extremly sick systemic child, which I had NO problem

with because that child could have been mine. She always returns my

calls within the day, if not sooner. If shes off her staff call her

at home if they think she should know about something straight away

and she will call me back. Shes come in on her day off to see Nick

when he was flaring. She calls to check on us before a trip when he

was not doing so well. She called last night to check on the MTX

situation. Shes a gem and i feel VERY blessed to have her as Nicks

doctor and I let her know this in a letter that i put in with her

christmas pressent.

Think about writting a letter, or calling, but this doctor really

needs to understand your situation and respond to fix it.

Good luck...

Let us know what happens...

HUgs Helen and (7,systemic)

-- In , " misty_o_c " <misty_o_c@h...> wrote:

>

> First off, I know drs are people too and I know situations come up

> that cannot be predicted but I am getting sick and tired of

changed

> appointments!!!! I think a good half of 's appointments

with

> his rheumy have been rescheduled. I have to ask for days off weeks

> in advance and it's a real pain for all involved to have to change

> things yet again. At one point this summer, they even had us

waiting

> each Tuesday for a phone call to know if he could get in to se the

> dr on Thursday. Which meant at work that I had every Thursday off

> just in case and when we did go, they had to have someone cover my

> Friday and Wednesday shifts (Wednesday so I could do the ordering

I

> usually do on Fridays. Add to that the fact that we have to travel

> down to St Louis and spend the night, because long trips make

> hurt. We tried doing it in one day and he couldn't walk

for

> 3 days afterwards. This means 2 days off work for me and if we

can't

> find a sitter, the older kids miss school. Plus we have to

schedule

> accomodations, though at least we have hopefully gotten to where

we

> won't have to pay for a hotel room each time.

> The point of all this is that they have rescheduled 's

> appointment yet again. Argh! The dr seemed adament at his last

> appointment that we keep this next appointment, as just

> started mtx. We got his first blood tests for it done today, 2

weeks

> after starting. His appointment was supposed to be Jan 6, right

> after his 4th dose. Now, they put it at Jan 20, when he'll have

had

> 6 doses if the labs come back ok. Sorry this is so long, but I'm

> rather frustrated at all this switching around.

>

> Misty & (6, systemic)

[Guest guest]

No, I never did get in touch with Youth Bridge. The Social Service

office at the hospital has agreed to help with lodging after the dr

confirmed that traveling so much in one day causes

difficulties. I know the holidays can be a busy time, it has been

here too, but a good kind of busy for the most part. I hope your

tests come back ok.

He usually sees Dr Beers, with Dr Wienkert (not sure of spelling?)

as supervising Rheumatologist. We go to Cardinal Glennon.

Misty & (6, systemic)

> Misty,

> did you in get in contact with Youth Bridge? I am so sorry that I

just now got back with you. I have been so busy with the holidays

and all and 's JRA and we have several other kids and now

they are running test on me they think I might have MS, so things

have been out of sort here.

> Who are you seeing in St. Louis? Is it at Children's Hospital?

> Alesha

> 7

[Guest guest]

has been in near constant flare since this all started in

April. He did have some better days during the summer, and the

fevers and rash have calmed some since starting mtx, but he's still

hurting. He has been seen every month or so since he got out of the

hospital in May.

is taking 0.4 ml of the liquid mtx orally. He also takes

prednisone and naprosyn daily and Tylenol as needed.

Misty & (6, systemic)

>

> Hi Misty,

>

> I can see why you would be so very frustrated with all of the

> cancelled appointments. We are in the same boat as you as far as

the

> start of mtx. My daughter will be getting her third dose

tomorrow.

>

> We are getting the lab work done today and then again in two weeks.

>

> Our rheumy has never even seen Aundrea in a flare. We have visits

> usually every 3-6 months and then this Nov. when she flared she

just

> ordered the pred over the phone and then when she flared again she

> managed it over the phone by ordering the mtx.

>

> Aundrea is suppose to be seen the end of Jan. and most likely

will

> have the flare under control again.

>

> At first I thought this was crazy to be ordering these strong

drugs

> without even seeing Aundrea. But then I realized by seeing her

> nothing would really change.

>

> I do get copies of all of her lab work so at least I can stay on

top

> of everything.

>

> How is doing on the MTX? What dose is he taking. Is he

on

> other meds as well? I sure hope that this will work for him.

>

> I wonder if the doctors office is aware of all of the

transportation,

> work and child care issues that you must face in order to keep

> appointments. If they aren't you should definately let them know

> what an imposition this is for you to have appts cancelled.

>

> (drea 9 systemic)-

[Guest guest]

We have spoken to the dr. The dr does not seem to always be aware of

the changes made. She even called us once asking why we had changed

an appt.

The origional appt had been for early August, but the office had

sent us a letter stating they had rescheduled it. The change would

have put him seeing the dr on his birthday. We called to change it,

and mentioned the dr wanted to see him no more than 5 weeks apart,

but they said there were no open times. That was when they put us on

a call-in basis.

I don't know of any rheumy who does local visits, though at least we

can get labs done nearby.

> Misty-

>

> I would think about changing drs. or speaking directly to the dr..

Our rheumy at Riley gave us the phone numbers and said to call any

time to talk to her. She said we would have lots of questions and

concerns as time went on. I have only had one visit cancelled. The

other partner in the office drives up from Indy to South Bend (about

30 min. away vs. 3 hours drive for us) to see patients in our area.

Just so parents don't have to drive as far. She comes up 4 times a

year. The Dec. visit was cancelled due to weather and they called to

cancel. I asked the receptionist what they would have me do- Nate

needed labs and was having back pain. The doc. called me back and

requested I take him to our family dr. and told me the labs he

needed to order. I know not all the doc.s are this caring but you

guys definitely deserve better. Sometimes it is just those not

sympathetic nurses or recptionist.Our rheumy followed Nate really

carefully when he first started the metho. but he was still really

> flaring. Do you have other options in your area for a rheumy? Do

they do off campus visits to a more local hospital?-Or does another

rheumy?? Dawn- Nate's mom