was:Re: small vent/

[Guest guest]

Hi Lynn,

You aren't out of line by your comments and frankly I feel the same

way. If I were a doctor I would be very hesitant to start someone

on steroids or mtx without first seeing them.

Aundrea rarely has swollen joints, although in this last flare her

right knee was swollen and I let her use crutches for a few days

until the flare then moved to include wrists and ankles.

I have taken pictures of everything, but nothing better than seeing

a child in person.

I am a geriatric social worker so I have some working knowledge on

drugs, labs etc...but nothing that would take the place of a doctors

expertise.

My husband will be graduating in June and will be a doctor of

chiropractic. I don't think our rheumy is even aware of this so its

not like she is trusting any of his judgement for the care of

Aundrea.

Probably, for us we are most educated on the harm that these

medications can cause, both short and long-term. I will tell you

that putting Aundrea on pred and mtx. was probably one of the most

difficult decisions we have had to make. It wasn't thru any hand-

holding from the doctor that helped us to arrive at this decision.

It was thru the education of this list and our own personal

research. We realize that the best chance Aundrea has for limited

disability in the future is to get this disease under control early

on.

I have a sister with chrones disease (onset age 15) she was treated

with mtx or also known as 6mp. She became horribly ill. Liver

enzymes thru the roof and severely anemic. I have a family full of

nurses. They were worried about this drug but understood our need

to try it. I am watching Aundrea closely, but would feel better if

she had a professional watching her.

Did I mention that when I got her labs back her lymphocytes were

very low and her neutrophils were high. When the rheumy called me

back on this she said oh her labs are just fine and she can start

the mtx. I was holding a copy of the labs in my hand so I

questioned her on the lab values (the ref range was a ped. scale)

and she said oh that is very normal for kids with autoimmune

disorders.

Another thing that makes things somewhat more complicated is that

Aundrea has had 2/3 consultations with rheumys that were unable to

give her a diagnosis. They say she has a connective tissue

disorder/auntoimmune disorder of some kind. When I ask the rheumy

if it is dangerous to treat Aundrea without having full knowledge of

what is actually the problem, she becomes defensive and says that

she doesn't like to lable kids or put them in a box and the

treatment would be the same either way.

The first rheumy we we went to was an adult rheumy. He diagnosed

Drea with systemic. WE loved him!! He prayed with Aundrea and sent

her cards. Oh how I wish we would have stayed with him. But, we

thought this is so rare a disease. WE want the best care for

Aundrea which we believed would mean a ped. rheumy!!!

Our current rheumy has never called to check up on Aundrea following

the use of steroids or even with the current mtx. order. She seems

very unconcerned with the use of new meds and down plays any side

effects they may have. When I mentioned Aundreas sun-sensitivity or

bruising after starting the plaquenil she chalked it up to the fact

that Aundrea is a blue eyed fair skinned child. But, prior to the

plaquenil she never burned (and she doesn't now, she just gets

splotches all over where skin is exposed) and she rarely bruised. I

have pictures of her with so many bruises on her legs you couldn't

even count them.

When Aundrea was on NSAIDS she developed dizziness, nausea, stomach

pain and that was when she started hiding the meds, because of all

the pain. The rheumy would just order another nsaid. This

inability for some doctors to accept that meds do have side effects

really infuriates me. As if it is all in the patients head.

When she was started on the plaquenil our rheumy said that it was so

safe they should just " put it in the water " for everyone to have. I

though my husband was going to jump out of his chair!

So, we are not satisfied. We had consultations at the three largest

areas near us (3 hours away) We ended up staying with the last one

we went to. It was easier to find, a childrens hospital and the eye

specialist was located in the same facility. Aundrea really liked

it there. Now that we will be moving to Arizona in just 6-7 months

I don't want to upset Aundrea by changing everything, only to change

again when we move.

I have rambled on and on. But your concern was very legitimate and

its one that I struggle with as well. I am friends with our ped.

and I do call him with questions from time to time. But he mostly

defers Aundrea's care to the rheumy.

I just wanted to give you a full picture of what has been taking

place.- I am so sorry that I took up so much space. I guess this

has been botteling up for some time and today it all just spilled

out.

(drea 9 systemic)

-- In , Lynn <llyoung@b...> wrote:

> 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)

>

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