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Hi ,

Here is a Idea. Since the Secretary probably did or did not tell the

Doctor. Since all Drs have a Answering Service at night I would call after

hours and have him contact you as soon as he could. The Service has his phone

number and can get a hold of him. He then can call you and talk.

You did good by calling the GP and going to see him as you can let him

know also about you have been trying to get a hold of the Rheumy. He too

can call and get right in to talk with him.

If the Secretary did not tell the Dr then she is in the wrong. If she

did tell him and he did not call you back then he is in the wrong. I would

come out and ask him soon as I was able to talk with him.

Does he have a Practice of other Dr's or back up Dr who takes over

when he is not in? If so some one in that Office no matter what should have

called you back. Let me know what happens at the GP today.

Robbin

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- I would be very angry too! I think that a return call is unacceptable.

If I call my rheumy I would expect a return call the same day or at the very

least the next day. I really hope that you get to speak to him soon and your GP

is able to help you

>

> I think it's been 2 weeks now since I first imformed the rheumy's secretary

that Amy is having a flare up and I've phoned her every day since to be told

that she will make sure rheumy gets the message to phone me and get Amy an

appointment to see him

>

> But nothing - and her pain is getting worse - she barely sleeps half the night

and by midday she is exhausted and tearful - by teatime she is whinging and

crying despite being on 6ml naproxin and 10 ml paracetamol 4 times a day

>

> I'm at the end of my tether and getting so angry!!

>

> I telephoned and made a GP appointment so hopefully today something will be

sorted for her bless

>

>

> xxxxx

>

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,

Since you spoke with the GP. That Rheumy must have been looking at

another child's record. I would call the GP back and explain that your child

does not take that dosage and You want to be Precautious about the

Medications. Let him or her contact the Rheumy again. Since the Rheumy is so to

say

on VACATION. The GP probably can get to him by phone a lot quicker. Also

inform the GP about the upped on the eye drops so he can also explain to the

Rheumy about it.

You may think you are bugging the GP but it is best to get the

information right so you will feel better.

Robbin

**************Shop Popular Dell Laptops now starting at $349!

(http://pr.atwola.com/promoclk/100126575x1222031056x1201446063/aol?redir=http:%2\

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You have every right to be mad. I would be too. I expect to hear back from

na's Rheumy the same day unless I have called late in the afternoon. This

happened to us when na was first sick. I finally called very angry and told

them I want something done NOW! You might have to call back and get a bit angry

with someone. Sometimes that's what it takes. I'm sorry this is happening. It

only adds to the stress of what is already stressful! Hope you get answers soon

*hugs*

ne & na 5yrs (JIA, Uveitis)

>

> I think it's been 2 weeks now since I first imformed the rheumy's secretary

that Amy is having a flare up and I've phoned her every day since to be told

that she will make sure rheumy gets the message to phone me and get Amy an

appointment to see him

>

> But nothing - and her pain is getting worse - she barely sleeps half the night

and by midday she is exhausted and tearful - by teatime she is whinging and

crying despite being on 6ml naproxin and 10 ml paracetamol 4 times a day

>

> I'm at the end of my tether and getting so angry!!

>

> I telephoned and made a GP appointment so hopefully today something will be

sorted for her bless

>

>

> xxxxx

>

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Maybe also go to the patient advocate to see what can be done. We had a problem

with the urologist once who left and went to lunch when my daughter was just

cathed for a test. Needless to say we got gift card and we did nto have to pay

the bill. Depending on how far the drive is to the dr. go in person and say you

are going to see him now, because it is an emergency. Do not leave without

seeing him.

http://buckeyebellessweets.com

From: suenkevan <susannefountain@...>

Subject: Re: Getting Very Cross

Date: Thursday, June 25, 2009, 10:16 AM

You have every right to be mad. I would be too. I expect to hear back from

na's Rheumy the same day unless I have called late in the afternoon. This

happened to us when na was first sick. I finally called very angry and told

them I want something done NOW! You might have to call back and get a bit angry

with someone. Sometimes that's what it takes. I'm sorry this is happening. It

only adds to the stress of what is already stressful! Hope you get answers soon

*hugs*

ne & na 5yrs (JIA, Uveitis)

>

> I think it's been 2 weeks now since I first imformed the rheumy's secretary

that Amy is having a flare up and I've phoned her every day since to be told

that she will make sure rheumy gets the message to phone me and get Amy an

appointment to see him

>

> But nothing - and her pain is getting worse - she barely sleeps half the night

and by midday she is exhausted and tearful - by teatime she is whinging and

crying despite being on 6ml naproxin and 10 ml paracetamol 4 times a day

>

> I'm at the end of my tether and getting so angry!!

>

> I telephoned and made a GP appointment so hopefully today something will be

sorted for her bless

>

>

> xxxxx

>

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I went to the GP and explained that I've been phoning for 2 weeks and that

Amy's actually been flaring for 3 weeks

GP phoned rheumy who happened to be in his office on the other line and

promised to ring her back - 10 minutes passed and he hadn't rang back so GP

took my mobile number and arranged to phone me when she'd heard from rheumy

2 hours later GP phoned to say rheumy had actually got back to her and to

start 30ml prednisolone daily for 1 week then reduce to 15ml for the 2nd

week - and to increase MTX from 5ml to 7.5ml per week

Well Amy's not on 5ml of MTX!!!! She's on 3ml!!!!

So I telephoned rheumy to query it and he's gone on vacation for 2 weeks!!!

ARGGGHHHHHHH!!!!!!!

I'm just gonna give her 5ml MTX for now till I can get hold of another

rheumy in the meantime

Uveitis - we saw Orthoptist today and it hasn't improved as well as she

hoped so eye drops will be every hour for a week and if still no change she

will switch to a different steroid eye drop

Amy had to have a special eye drop to enlarge her pupil for examination and

her pupils are still big hours later!!!

Love

xxxxxxxxxxx

From: [mailto: ] On Behalf

Of Robbin40@...

Sent: 25 June 2009 12:52

Subject: Re: Getting Very Cross

Hi ,

Here is a Idea. Since the Secretary probably did or did not tell the

Doctor. Since all Drs have a Answering Service at night I would call after

hours and have him contact you as soon as he could. The Service has his

phone

number and can get a hold of him. He then can call you and talk.

You did good by calling the GP and going to see him as you can let him

know also about you have been trying to get a hold of the Rheumy. He too

can call and get right in to talk with him.

If the Secretary did not tell the Dr then she is in the wrong. If she

did tell him and he did not call you back then he is in the wrong. I would

come out and ask him soon as I was able to talk with him.

Does he have a Practice of other Dr's or back up Dr who takes over

when he is not in? If so some one in that Office no matter what should have

called you back. Let me know what happens at the GP today.

Robbin

**************Shop Popular Dell Laptops now starting at $349!

(http://pr.atwola.com/promoclk/100126575x1222031056x1201446063/aol?redir=htt

p:%2F%2Fad.dou

bleclick.net%2Fclk%3B215910283%3B38350812%3Ba)

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Guest guest

,

You will now have two variables going with the uveitis so be aware.

Yes, you are increasing the drops, but now she will be on oral

prednisone. My bet would be that the oral stuff will have more

impact than the drops. Make sure your rheumy and eye doctor are

COMMUNICATING about their every move.

I am no expert on uveitis, but I wouldn't mess with the drops too

long before you explore different options that get more at the heart

of the eye inflammation. (n, 20, systemic)

On Jun 25, 2009, at 10:05 AM, wrote:

>

>

> I went to the GP and explained that I've been phoning for 2 weeks

> and that

> Amy's actually been flaring for 3 weeks

>

> GP phoned rheumy who happened to be in his office on the other line

> and

> promised to ring her back - 10 minutes passed and he hadn't rang

> back so GP

> took my mobile number and arranged to phone me when she'd heard

> from rheumy

>

> 2 hours later GP phoned to say rheumy had actually got back to her

> and to

> start 30ml prednisolone daily for 1 week then reduce to 15ml for

> the 2nd

> week - and to increase MTX from 5ml to 7.5ml per week

>

> Well Amy's not on 5ml of MTX!!!! She's on 3ml!!!!

>

> So I telephoned rheumy to query it and he's gone on vacation for 2

> weeks!!!

>

> ARGGGHHHHHHH!!!!!!!

>

> I'm just gonna give her 5ml MTX for now till I can get hold of another

> rheumy in the meantime

>

> Uveitis - we saw Orthoptist today and it hasn't improved as well as

> she

> hoped so eye drops will be every hour for a week and if still no

> change she

> will switch to a different steroid eye drop

>

> Amy had to have a special eye drop to enlarge her pupil for

> examination and

> her pupils are still big hours later!!!

>

> Love

> xxxxxxxxxxx

>

> From: [mailto: ] On

> Behalf

> Of Robbin40@...

> Sent: 25 June 2009 12:52

>

> Subject: Re: Getting Very Cross

>

>

> Hi ,

> Here is a Idea. Since the Secretary probably did or did not tell the

> Doctor. Since all Drs have a Answering Service at night I would

> call after

> hours and have him contact you as soon as he could. The Service has

> his

> phone

> number and can get a hold of him. He then can call you and talk.

> You did good by calling the GP and going to see him as you can let him

> know also about you have been trying to get a hold of the Rheumy.

> He too

> can call and get right in to talk with him.

> If the Secretary did not tell the Dr then she is in the wrong. If she

> did tell him and he did not call you back then he is in the wrong.

> I would

> come out and ask him soon as I was able to talk with him.

> Does he have a Practice of other Dr's or back up Dr who takes over

> when he is not in? If so some one in that Office no matter what

> should have

> called you back. Let me know what happens at the GP today.

> Robbin

> **************Shop Popular Dell Laptops now starting at $349!

> (http://pr.atwola.com/promoclk/100126575x1222031056x1201446063/aol?

> redir=htt

> p:%2F%2Fad.dou

> bleclick.net%2Fclk%3B215910283%3B38350812%3Ba)

>

>

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- First of all - I would be looking for a new rheumy if I were you.

Secondly - I think that you need to be seeing a Ped Opthamologist, not an

orthoptist. I'm sorry but I can't remember if you are new to uveitis or not. It

is really important that you see a ped Opth that has experience dealing with

uveitis. Also one that will work with your Rheumy. When we first started all of

this, it was our ped opth that referred us to our ped rheumy because they worked

well together. Now when we see the rheumy I always schedule the opth appt right

before the rheumy. That way we can tell the rheumy how his eyes are so we can

discuss changing doses or whatnot. Your rheumy should definately know about the

eye inflammation and how that is being treated. Since we see the Opth more

often than the rheumy, if there are changes in between time I will always let

the rheumy know by calling him.

The good news is that since you are increasing the MTX that should also help

with the eyes. MTX has done wonders for Grant's eyes!!! Maybe the increase in

drops isn't necessary if your opth knows that the rheumy increased the mtx. Do

you know what her level of inflammation is? They will always tell you if it 1+,

2+ on up... for every 10 cells they see in the eye it is a 1+. So if they count

21 cells they call that a 2+. Depending on the level of inflammation the drops

are necessary to get the inflammation down quickly. But I would also caution

you on using them for too long.

& Grant (12, PsA/Uveitis)

>

> >

> >

> > I went to the GP and explained that I've been phoning for 2 weeks

> > and that

> > Amy's actually been flaring for 3 weeks

> >

> > GP phoned rheumy who happened to be in his office on the other line

> > and

> > promised to ring her back - 10 minutes passed and he hadn't rang

> > back so GP

> > took my mobile number and arranged to phone me when she'd heard

> > from rheumy

> >

> > 2 hours later GP phoned to say rheumy had actually got back to her

> > and to

> > start 30ml prednisolone daily for 1 week then reduce to 15ml for

> > the 2nd

> > week - and to increase MTX from 5ml to 7.5ml per week

> >

> > Well Amy's not on 5ml of MTX!!!! She's on 3ml!!!!

> >

> > So I telephoned rheumy to query it and he's gone on vacation for 2

> > weeks!!!

> >

> > ARGGGHHHHHHH!!!!!!!

> >

> > I'm just gonna give her 5ml MTX for now till I can get hold of another

> > rheumy in the meantime

> >

> > Uveitis - we saw Orthoptist today and it hasn't improved as well as

> > she

> > hoped so eye drops will be every hour for a week and if still no

> > change she

> > will switch to a different steroid eye drop

> >

> > Amy had to have a special eye drop to enlarge her pupil for

> > examination and

> > her pupils are still big hours later!!!

> >

> > Love

> > xxxxxxxxxxx

> >

> > From: [mailto: ] On

> > Behalf

> > Of Robbin40@...

> > Sent: 25 June 2009 12:52

> >

> > Subject: Re: Getting Very Cross

> >

> >

> > Hi ,

> > Here is a Idea. Since the Secretary probably did or did not tell the

> > Doctor. Since all Drs have a Answering Service at night I would

> > call after

> > hours and have him contact you as soon as he could. The Service has

> > his

> > phone

> > number and can get a hold of him. He then can call you and talk.

> > You did good by calling the GP and going to see him as you can let him

> > know also about you have been trying to get a hold of the Rheumy.

> > He too

> > can call and get right in to talk with him.

> > If the Secretary did not tell the Dr then she is in the wrong. If she

> > did tell him and he did not call you back then he is in the wrong.

> > I would

> > come out and ask him soon as I was able to talk with him.

> > Does he have a Practice of other Dr's or back up Dr who takes over

> > when he is not in? If so some one in that Office no matter what

> > should have

> > called you back. Let me know what happens at the GP today.

> > Robbin

> > **************Shop Popular Dell Laptops now starting at $349!

> > (http://pr.atwola.com/promoclk/100126575x1222031056x1201446063/aol?

> > redir=htt

> > p:%2F%2Fad.dou

> > bleclick.net%2Fclk%3B215910283%3B38350812%3Ba)

> >

> >

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Guest guest

I'm sure it is different with everyone, but na got Cataracts after only 6

months on and off of Prednisone drops. I was shocked as I thought it would take

A LOT longer for her eyes to be damaged.

ne

>

> >

> >

> > I went to the GP and explained that I've been phoning for 2 weeks

> > and that

> > Amy's actually been flaring for 3 weeks

> >

> > GP phoned rheumy who happened to be in his office on the other line

> > and

> > promised to ring her back - 10 minutes passed and he hadn't rang

> > back so GP

> > took my mobile number and arranged to phone me when she'd heard

> > from rheumy

> >

> > 2 hours later GP phoned to say rheumy had actually got back to her

> > and to

> > start 30ml prednisolone daily for 1 week then reduce to 15ml for

> > the 2nd

> > week - and to increase MTX from 5ml to 7.5ml per week

> >

> > Well Amy's not on 5ml of MTX!!!! She's on 3ml!!!!

> >

> > So I telephoned rheumy to query it and he's gone on vacation for 2

> > weeks!!!

> >

> > ARGGGHHHHHHH!!!!!!!

> >

> > I'm just gonna give her 5ml MTX for now till I can get hold of another

> > rheumy in the meantime

> >

> > Uveitis - we saw Orthoptist today and it hasn't improved as well as

> > she

> > hoped so eye drops will be every hour for a week and if still no

> > change she

> > will switch to a different steroid eye drop

> >

> > Amy had to have a special eye drop to enlarge her pupil for

> > examination and

> > her pupils are still big hours later!!!

> >

> > Love

> > xxxxxxxxxxx

> >

> > From: [mailto: ] On

> > Behalf

> > Of Robbin40@...

> > Sent: 25 June 2009 12:52

> >

> > Subject: Re: Getting Very Cross

> >

> >

> > Hi ,

> > Here is a Idea. Since the Secretary probably did or did not tell the

> > Doctor. Since all Drs have a Answering Service at night I would

> > call after

> > hours and have him contact you as soon as he could. The Service has

> > his

> > phone

> > number and can get a hold of him. He then can call you and talk.

> > You did good by calling the GP and going to see him as you can let him

> > know also about you have been trying to get a hold of the Rheumy.

> > He too

> > can call and get right in to talk with him.

> > If the Secretary did not tell the Dr then she is in the wrong. If she

> > did tell him and he did not call you back then he is in the wrong.

> > I would

> > come out and ask him soon as I was able to talk with him.

> > Does he have a Practice of other Dr's or back up Dr who takes over

> > when he is not in? If so some one in that Office no matter what

> > should have

> > called you back. Let me know what happens at the GP today.

> > Robbin

> > **************Shop Popular Dell Laptops now starting at $349!

> > (http://pr.atwola.com/promoclk/100126575x1222031056x1201446063/aol?

> > redir=htt

> > p:%2F%2Fad.dou

> > bleclick.net%2Fclk%3B215910283%3B38350812%3Ba)

> >

> >

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