Re: anyone ever just want to scream?

January 17, 2008

,

I understand the feeling. When was tiny she would pick up

everything going around. Even before being Diagnosed with JRA. My Step Dad

always

called her a Sickly child and she was Pale alot.

I learned a lot by . As grew I learned. lololol. When my Son would

get sick I would tell him to stay in his room lololol. If was sick

she had to stay in her room. I went even farther and made sure when anyone was

sick at the house everyone ate out of Paper plates and Plastic forks and

spoons plus we also had the throw away cups. lololol. You would not believe How

that helped in cutting down on how many times was sick. I also use

the Lysol spray and spray all knobs and faucet handles. I wipe down with Clorox

wipes.

In 1999 we found out about the MRSA Issues. This was when started

paying attention to where her hands went lolol. You can catch it anywhere. I

still will open a door with my sleeve or with a Napkin or the pinkie finger

if I have to or the shirt tail. You never know what kind of Germs are lurking

out there. I have sat and watched smaller kid's and boy they can pass Germs

around so easy.

Robbin

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 17, 2008

,

I wrote to you before about how often we have to deal with residents as

UCLA/Mattel Children's is a teaching hospital. We did have to request that a

particular resident no longer be involved in any part of 's care due to a

serious error in judgment on her part. Beyond that, if there is a

misunderstanding, try to take a deep breath, until you can clarify with the

rheumatologist himself. I cannot imagine this rheumy would not follow him for a

time to see what develops, even if he also refers to other specialists. Do not

waste your precious time and energy arguing with the resident.

It has been an extremely stressful time for you - see if there is a different

resident you can deal with if you must deal with a resident.

Take care,

(, 17, poly, cvid, migraines)

nurse0300 <nurse0300@...> wrote: As I posted

earlier calebs sister has a virus and also chicken pox.

yeah we are lucky all at the same time. I called the rheumy to ask

if there is any special percautions we are new at having a sick

child so i was not sure and i know that his immunity was low. The

resident that we are not that fond of calls me back basically makes

fun of my concerns and looked at this lab work from today and was

like he is preectly healthy.....ummm.....ok i guess its normal to

have this horrific rash high fevers and leg pain as well as other

joint pain. I asked her to repeat her self she was like we probably

will dismiss you from our services we have been seeing him for over

a month and really we cant find anything and his labs look good

today. Ok last time I checked when you have high fevers/rashes/ and

pain that this is something espically for almost 14 weeks. THen I

mentioned what was said in the last visit mind you she was " playing "

with our son making jokes acting like a child herself not that we

are dr and like to ahve a little fun but i am as childish as your 7

year old. SHe was like well i didnt get that from the visit you

must of misunderstood you need to talk with the dr about that while

she was still on the line i asked my husband what was said he said

the exact same thing that i said before i said it. SHe was like you

just better talk with him about that and if you want to follow up

with someone else that is your perogative.....this is the second

time she has said that she didnt hear what we heard......something

is going on and i am furious...and i know for a fact what was said

was because the other dr talked to our rheumy about this after our

visit and i think that he would of corrected me when the other dr

called our rheumy i think that our rheumy would of called us and

said umm i think there is a misunderstanding this is what i meant or

something like that, but when the other dr called us back after

talking with our rheumy he said that yes they agreed and this was

the plan....so i dont think that me and my husband are crazy...going

there but not there yet....what can we do in this situation. please

help i feel like i am an imcomptent mother that can not even

understand and comperhend what is said in a visit since everytime i

talk with the reisdent after the visit what was said was not said...

well you get the picture...what should we do?

---------------------------------

Never miss a thing. Make your homepage.

January 18, 2008

- I agree with , you should request that the resident

is not involoved with his care. I don't blame you for being upset,

I would be too.

We had an experience this past month with a derm. I took Grant to

see him for his psoriasis. We haven't had a derm in our town for a

few years and he is very young and just started. He told us that

Grant did not have psoriasis and that kids don't get PsA! And that

psoriasis doesn't cause uveitis. I was very upset after this appt.

Just this week we had an appt. with our rheumy and discussed this.

The rheumy told us that Derm's don't have to have as much schooling

as they used to. So they don't know as much! We won't be going to

that derm again and will search for a more experienced one in the

future.

and Grant/10/Uveitis/PsA

>

> As I posted earlier calebs sister has a virus and also chicken

pox.

> yeah we are lucky all at the same time. I called the rheumy to

ask

> if there is any special percautions we are new at having a sick

> child so i was not sure and i know that his immunity was low. The

> resident that we are not that fond of calls me back basically

makes

> fun of my concerns and looked at this lab work from today and was

> like he is preectly healthy.....ummm.....ok i guess its normal to

> have this horrific rash high fevers and leg pain as well as other

> joint pain. I asked her to repeat her self she was like we

probably

> will dismiss you from our services we have been seeing him for

over

> a month and really we cant find anything and his labs look good

> today. Ok last time I checked when you have high fevers/rashes/

and

> pain that this is something espically for almost 14 weeks. THen I

> mentioned what was said in the last visit mind you she

was " playing "

> with our son making jokes acting like a child herself not that we

> are dr and like to ahve a little fun but i am as childish as your

7

> year old. SHe was like well i didnt get that from the visit you

> must of misunderstood you need to talk with the dr about that

while

> she was still on the line i asked my husband what was said he said

> the exact same thing that i said before i said it. SHe was like

you

> just better talk with him about that and if you want to follow up

> with someone else that is your perogative.....this is the second

> time she has said that she didnt hear what we heard......something

> is going on and i am furious...and i know for a fact what was said

> was because the other dr talked to our rheumy about this after our

> visit and i think that he would of corrected me when the other dr

> called our rheumy i think that our rheumy would of called us and

> said umm i think there is a misunderstanding this is what i meant

or

> something like that, but when the other dr called us back after

> talking with our rheumy he said that yes they agreed and this was

> the plan....so i dont think that me and my husband are

crazy...going

> there but not there yet....what can we do in this situation.

please

> help i feel like i am an imcomptent mother that can not even

> understand and comperhend what is said in a visit since everytime

i

> talk with the reisdent after the visit what was said was not

said...

> well you get the picture...what should we do?

>

January 18, 2008

The response you are getting is very out of the ordinary for a

Pediatric Rheumatologist. I am puzzled and must say I didn't expect

this from a Cinci Children's. I switched Rheumy's with Isabelle

after 8 months of treatment. Well, that is to say, she wasn't

getting adequate treatment; bordering on medical malpractice even

(didn't change meds after several months, even when it was apparent

that Naprosyn was making her very ill and causing a severe

contracture in her knee). Sometimes God nudges us when we need it.

I got a second opinion and it saved my daughters joint, literally.

It was another 6 months of physical therapy to undo what the first

Rheumy caused. Lesson learned the hard way.

All I am saying is, listen to your heart, that's GOD. If you feel

that you aren't being listened to and that they are making you feel

like your hearing is going (i.e. " nuts " ), it may just be time to move

on. It's a weird thing, some people loved the first Rheumy we went

to but he was NOT for us. In other words, he may be a good doctor

but something isn't sitting well for you and perhaps someone will be

a better " fit " for Caleb and YOU.

Things will get better...they can only go up from here right, lol? I

will continue to pray for Caleb and now his sister too , Hadley

January 18, 2008

Personally, I would request to not see this resident again. If you do

see this one resident again, I would recommend taking a small

cassette recorder. Do not have it hidden, as that might be illegal in

some states. Just have it out and explain that you would like to

record what is said due to previous communications issues. This might

cause the resident to choose not to see you, or get a reality dose

that the games are not going to be stood for.

Misty & (9, systemic)

>

> As I posted earlier calebs sister has a virus and also chicken pox.

> yeah we are lucky all at the same time. I called the rheumy to ask