Re: Caroline's Rheumy Visit

[Guest guest]

Hi Alia:

I am thrilled to hear little Caroline had a good rheumy visit. I hope her

SED rate goes back down and stays down. That is great about her drops for her

eyes becoming less. She and you must be thrilled about that. Here's to no

cells at next visit.

Take care.

Patty

[Guest guest]

Hi Alia,

Glad to hear Miss C had a great appointment and the eye news was very

exciting.

I do so pray the WBC comes up.I guess it was caused by too heavy doses of the

immunosupresants,but should improve since the MTX dose was lowered.I remember

all those nasty little astrics or several things in the high or low column.I

agree with Stacia,the SED could still be picking up the nasty tummy illness

Caroline had.s never had a CRP that I know of but when he has to restart

labs I will have that one included.Since coming off the MTX no more labs for

now.

I would just be rejoicing in the joint improvement.So many people have had

high SED's and felt great and low SED's and felt awful. for the first time

in 2 yrs had 2 things abnormal and I liked to had a cow,lol the funny part is

it's not a pediatric lab and his MCV came 1 point low and his Platelet count

came back 4 points high.

Sorry I started talking about ,I try not to talk about how he is doing

anymore and focus more on helping.

Just know that I am so happy Caroline had a great appointment and hope things

keep getting better.

Love and hugs

Becki and 6 systemic

[Guest guest]

Alia,

Great to have a good rheumy visit, isn't it?!!! I'm so glad to hear

Caroline is doing so well, and they eye getting better too. That is

mystifying about the sed. rate. I assume that's why you can't taper

the pred yet? I wonder if any other internal things are inflamed to

cause the high sed. rate. Did the rheumy check the

liver/spleen/etc.? We'll pray for a lower sed. rate.

Actually, did you get a CRP result? That is a better indicator of

inflammation at the moment of the blood test. Maybe the sed. is

lingering from inflammation from a few weeks ago? Just thinking out

loud, not trying to play doctor.

Hugs,

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Alia:

I am so glad that Caroline's joints are looking good, but I know that the

sed rate must worry you. It is so great that her eyes are better...I

guess we have to take the victories, whatever they are!! As long as she

is feeling so much BETTER!

I still recall watching her dancing up on the stage at AJAO...what a

cutie!!

Here's hoping that the sed rate drops and the stiffness finally

disappears.

How is your knee doing?

and Rob 15 Spondy

On Wed, 15 Sep 2004 13:25:41 -0500 " Pranke, Alia "

<Alia.Pranke@...> writes:

Greetings! We just got back from Caroline's rheumy and we had an

excellent

appointment. All of her joints continue to look good, but she is just a

little bit on the stiff side so we are adding Ibuprofen again to help.

Her

biggest concerns right now are her height and her sed rate.

She mapped her growth and since January she has fallen off the curve.

It's

not a ton, but she is probably 6+ months behind right now on the growth

chart. She hopes that her current dosage of prednisone (5mg) is low

enough

to not affect her anymore, but also stated we won't be getting off

prednisone anytime soon. Her only comment on that was that she doesn't

think

she'll be on them her entire life. Not sure how to read that one!

Her other concern is that her Sed rate has also never really gone down.

Her

last labs two weeks ago showed a sed rate of 56, but she has consistently

been at around 30. So, while her joints are starting to look really great

her labs are still all over the place. Her white blood count is low also

but

not terrible. She's also not anemic which is a really great sign she

said.

So, like so many others on this list, Caroline looks good, but her labs

are

bad or vice versus. It's never a clear picture. Her eyes are also looking

better too. She's down from a 1+ to a trace and we have lowered her eye

drops to 4 times daily

Sorry this got long. I am still catching up on posts. I only have 126

unread

email messages!

Alia and Caroline, age 2, poly and uveitis

[Guest guest]

Thanks so much . We really are quite relieved. Now we are just hoping

nothing goes wrong in the next month because her Rheumy will be on vacation

the whole month of October practically!

Thanks so much. What a compliment. She is soo much fun, I can hardly

remember life without her. Last night she gave me a big hug and said " I love

you so much! " Just out of the blue! My heart broke in half right there

My knee is coming along, thanks for asking. I get my stitches out today.

It's still pretty swollen and numb, but much better. I still can't go up or

down stairs but I am off of my crutches!

Alia and Caroline, age 2, poly and uveitis

Re: Caroline's Rheumy Visit

Alia:

I am so glad that Caroline's joints are looking good, but I know that the

sed rate must worry you. It is so great that her eyes are better...I

guess we have to take the victories, whatever they are!! As long as she

is feeling so much BETTER!

I still recall watching her dancing up on the stage at AJAO...what a

cutie!!

Here's hoping that the sed rate drops and the stiffness finally

disappears.

How is your knee doing?

and Rob 15 Spondy

On Wed, 15 Sep 2004 13:25:41 -0500 " Pranke, Alia "

<Alia.Pranke@...> writes:

Greetings! We just got back from Caroline's rheumy and we had an

excellent

appointment. All of her joints continue to look good, but she is just a

little bit on the stiff side so we are adding Ibuprofen again to help.

Her

biggest concerns right now are her height and her sed rate.

She mapped her growth and since January she has fallen off the curve.

It's

not a ton, but she is probably 6+ months behind right now on the growth

chart. She hopes that her current dosage of prednisone (5mg) is low

enough

to not affect her anymore, but also stated we won't be getting off

prednisone anytime soon. Her only comment on that was that she doesn't

think

she'll be on them her entire life. Not sure how to read that one!

Her other concern is that her Sed rate has also never really gone down.

Her

last labs two weeks ago showed a sed rate of 56, but she has consistently

been at around 30. So, while her joints are starting to look really great

her labs are still all over the place. Her white blood count is low also

but

not terrible. She's also not anemic which is a really great sign she

said.

So, like so many others on this list, Caroline looks good, but her labs

are

bad or vice versus. It's never a clear picture. Her eyes are also looking

better too. She's down from a 1+ to a trace and we have lowered her eye

drops to 4 times daily

Sorry this got long. I am still catching up on posts. I only have 126

unread

email messages!

Alia and Caroline, age 2, poly and uveitis