Re: It always has to be something!

[Guest guest]

I hope things calm for you quickly. Sorry the labs were not good, that is so

frustrating all by itself. The fact that they did not notify you sooner is

inexcusable. April was just last week so not sure how far back in April you had

the labs drawn.

Veri & Jaye 17 poly

It always has to be something!

The specialty pharmacy called Friday to send Avery's medicine for this month and

told me they needed a refill and hadn't heard back from the Dr. So I called the

Dr and the nurse was reading the notes to herself and I heard her say something

about blood test results. So I asked if they were normal, because they call if

they aren't. And no, his kidney test was high again. The same #'s as when he was

in the hospital. It was high in February after his flair but the Dr called me

and we weren't surprised because of the flair. I expected it to be normal in

April because he was doing so well. In Jan the kidney Dr said he was fine and

could take advil again if he needed to. We haven't taken it but relaxed some. So

I called the kidney dr's nurse and she was upset they didn't have the results

and gave me the fax number. She said she'd let the Dr know they were coming and

if she wanted to see him sooner than his July follow up they'd call me. I hate

this disease.

[Guest guest]

April 6!  And not only did they not tell me they know he's being followed by

the kidney dr's and didn't send them anything!

Amy mom to Avery 17 systemic

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Wednesday, May 4, 2011 12:22 PM

Subject: Re: It always has to be something!

 

I hope things calm for you quickly. Sorry the labs were not good, that is so

frustrating all by itself. The fact that they did not notify you sooner is

inexcusable. April was just last week so not sure how far back in April you had

the labs drawn.

Veri & Jaye 17 poly

It always has to be something!

The specialty pharmacy called Friday to send Avery's medicine for this month and

told me they needed a refill and hadn't heard back from the Dr. So I called the

Dr and the nurse was reading the notes to herself and I heard her say something

about blood test results. So I asked if they were normal, because they call if

they aren't. And no, his kidney test was high again. The same #'s as when he was

in the hospital. It was high in February after his flair but the Dr called me

and we weren't surprised because of the flair. I expected it to be normal in

April because he was doing so well. In Jan the kidney Dr said he was fine and

could take advil again if he needed to. We haven't taken it but relaxed some. So

I called the kidney dr's nurse and she was upset they didn't have the results

and gave me the fax number. She said she'd let the Dr know they were coming and

if she wanted to see him sooner than his July follow up they'd call me. I hate

this disease.

[Guest guest]

Major GRRRRRRRRRRRRRRRRRRRRRR

A full month is totally unacceptable

It always has to be something!

The specialty pharmacy called Friday to send Avery's medicine for this month and

told me they needed a refill and hadn't heard back from the Dr. So I called the

Dr and the nurse was reading the notes to herself and I heard her say something

about blood test results. So I asked if they were normal, because they call if

they aren't. And no, his kidney test was high again. The same #'s as when he was

in the hospital. It was high in February after his flair but the Dr called me

and we weren't surprised because of the flair. I expected it to be normal in

April because he was doing so well. In Jan the kidney Dr said he was fine and

could take advil again if he needed to. We haven't taken it but relaxed some. So

I called the kidney dr's nurse and she was upset they didn't have the results

and gave me the fax number. She said she'd let the Dr know they were coming and

if she wanted to see him sooner than his July follow up they'd call me. I hate

this disease.

[Guest guest]

I am right there with you on hating this disease Amy. You never really know from

one day to the next

what will happen or what to expect. I really thought Kaylee was sorta in the

clear because it had been so

long since she had had a flare with the JA or Uveitis and then WHAM! I wish I

could wave a magic wand

and take it all away and our kids didn't have to suffer the way they do.

Hugs to you and stay strong!

and Kaylee

It always has to be something!

The specialty pharmacy called Friday to send Avery's medicine for this month and

told me they needed a refill and hadn't heard back from the Dr. So I called the

Dr and the nurse was reading the notes to herself and I heard her say something

about blood test results. So I asked if they were normal, because they call if

they aren't. And no, his kidney test was high again. The same #'s as when he was

in the hospital. It was high in February after his flair but the Dr called me

and we weren't surprised because of the flair. I expected it to be normal in

April because he was doing so well. In Jan the kidney Dr said he was fine and

could take advil again if he needed to. We haven't taken it but relaxed some. So

I called the kidney dr's nurse and she was upset they didn't have the results

and gave me the fax number. She said she'd let the Dr know they were coming and

if she wanted to see him sooner than his July follow up they'd call me. I hate

this disease.

[Guest guest]

Ergh... that is totally unacceptable. >

>

> The specialty pharmacy called Friday to send Avery's medicine for this month

and told me they needed a refill and hadn't heard back from the Dr. So I called

the Dr and the nurse was reading the notes to herself and I heard her say

something about blood test results. So I asked if they were normal, because they

call if they aren't. And no, his kidney test was high again. The same #'s as

when he was in the hospital. It was high in February after his flair but the Dr

called me and we weren't surprised because of the flair. I expected it to be

normal in April because he was doing so well. In Jan the kidney Dr said he was

fine and could take advil again if he needed to. We haven't taken it but relaxed

some. So I called the kidney dr's nurse and she was upset they didn't have the

results and gave me the fax number. She said she'd let the Dr know they were

coming and if she wanted to see him sooner than his July follow up they'd call

me. I hate this disease.

>

>

>