was:Re: small vent/

[Guest guest]

Hi :

I am WAY behind in these emails, (had a lot of company over the

holidays) so please excuse the late reply. I was just a little

concerned (shocked, actually, that her doctors don't insist on seeing

her in a flare, regardless of appts or timing) about the fact that

Aundrea's doctors so her so little. The doctors see so much more detail

than we do, in the joints and all. One of the things we value with our

appts is the relationship the doctor has built not just with us, but

with Mickey. They know what looks normal on her and what doesn't. I

don't know... I'm just concerned, for you and Aundrea. It seems very

irresponsible of them to not have more contact with her and not to want

to SEE her in a flare, and see her before they prescribe stuff. It's

great they take your word for it, and maybe you have professional

training of your own... and I know I'm phrasing this all kind of badly.

I mean no criticism of you, and if this is/has always been the

relationship you have with Aundrea's doctor, then you wouldn't know

different but - but I would NOT be even a little comfortable with the

" hands off " approach they are showing. They need to see her, need to

examine her personally, especially since she is systemic. They can get

enlarged spleens and livers and have lung and heart involvement! Unless

you yourself are a medical professional, how could you be expected to

find these things? Labs are not the be-all end-all diagnostic tool, and

they aren't infallible. I think her doctors are being close to

criminally negligent with their 'distance' care. Perhaps I am putting

this too strongly, but based on what you've said, in your email,

below... wow. I can't help but be shocked. Surely I'm not the only one

who thinks this?

Lynn

Mom to Mickey, 10, systemic jra since 3

On Dec 30, 2004, at 10:13 AM, sonia1md wrote:

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)