Tomorrow...

[Guest guest]

> Well school has already been called off for tomorrow, and hubby will

> be home unless a snow plow happens upon our way by tomorrow morning

My 2 guys are gone and already in their respective places. The kid was

already gone an hour before the notice about delayed openings was posted on

the school web site, so I phoned to let him know, in case he wanted to get

off the last train at a different stop to grab breakfast. He was already in

the classroom for his 8:30 (now cancelled) class! He made better time on the

trains today than on most other days, he said.

>I managed to get 2 tuna recipes typed up

I see them (and the beef stew), thanks. I know I promised hubby a tuna

casserole this week, but after last night's mac & cheese with (urp - 'scuse

me) SPAM, all I want to do today is eat some greenery and drink my water to

get it all out of me!

> The other source I used for recipes (diabetes.org) has changed their

> format and they no longer list the exchanges,

Darn! Almost everyone is on the glycemic index/carb counting bandwagon these

days.

> I hope everyone else is weathering the storms!

After getting predictions of anywhere from 3 to 18 inches, our city got

about 4-5 out there, but weathermen on all the morning news shows are

showing areas in the 2 states that did get those higher levels, but none are

within 20 miles of NYC. I'll bet their mayor is now sorry he announced

today's school closures *yesterday*!

Sue in NJ

where the snow has stopped, the sun is shining, but the wind and cold are

still here (22º)

[Guest guest]

Ella has a follow up appointment tomorrow. She'll be seeing her pediatrician

who will talk to her rheumatologist. We were told they would draw blood to

check her liver (I believe...) because of the ibuprofen can cause side effects.

I *think* they said they'd also check her sed rate and c reactive protein again

(I plan to ask what her levels were last time just because I'm curious and

didn't think to ask before). I'm going to ask for copies of everything actually

just because I want to keep copies of everything just in case I need them in the

future. If there is one thing I've learned through all my experience with

doctors, its that they (doctors) don't know everything. I am the mother and I

know my kids better than they ever could. I am their advocate and I'm going to

do what I have to to make sure they get the best care possible. My second

daughter has had quite a few medical issues and has epilepsy now, my third

daughter is healthy as can be but has had several " fluke " things and has needed

7 surgeries (she's 6), and my fourth daughter has asthma, so I'm not new to

doctors/hospitals...neither is advocating for my kids.

Anyway, the ibuprofen is obviously not working. Of course Ella had a really

good day today! Very little pain when she woke up. She ran and played for a

pretty long time at the park. It was AWESOME! Of course she still took 2

naps...2 and 2.5 hours and went to bed on time. She's tired a lot, but I guess

that comes with it. But, pain wise, she had an awesome day! I'm kinda worried

that she'll be having a good day tomorrow as well and the doctor won't take me

seriously when I tell her that she's still having pain and it hasn't gotten

any/much better with the ibuprofen. When she was diagnosed (1/21) the nurse

from the rheumatologist's office called and said that he wanted her on ibuprofen

3 times a day every day for a month. After that she'd follow up with her

pediatrician and if she wanted her to continue the ibuprofen, she'd have to

prescribe more. If it was working, she may want to discontinue. If not, he

suggested continuing one more month then if she was still having problems to a

repeat ultrasound of her knee and if she still had fluid, do steroid injections.

I've heard great things about this doctor (he is a ped rheumy) but honestly, I " m

not too thrilled with that. I don't want to keep giving her ibuprofen for

another month when its clearly not working! If it was going to work, it would

have worked by now. And from what I've read (here and online) NSAIDs are like a

bandaid...its not helping anything really....well not " fixing " anything. And

why do another ultrasound? When he examined her he said he saw no signs of

arthritis. He moved all her joints all around and said she seemed fine. He

ordered tests and her sed rate and c reactive protein were both elevated and the

x-ray of her right knee showed an effusion. They did an ultrasound that

confirmed that she did have an effusion. Then he called and said with that

information and the symptoms she'd been having, he felt she DID have JRA. Which

is what her pediatrician said she suspected since about a month after her

problems started (well, after she started having episodes of pain in her knee

(and then her other knee and ankle as well, but the majority of the time, its

her right knee that bothers her). She also saw an orthopedic doctor who

originally thought it was a viral infection, but then when she had problems with

her other knee and it lasted more than a few weeks, she said she felt sure she

had arthritis and agreed with her pediatrician that she needed to be seen be a

rheumatologist. It took months for her to get in with a pediatric

rheumatologist.

Anyway I'm rambling...sorry... I'm anxious for the appointment tomorrow. I'm

scared we might not make it on time and have to reschedule. DD#2 has an

appointment at 11:00 and they will be hooking up the EEG thing-a-ma-jiggies (I

have no clue what they are called...electrodes?) and she'll come home with it

hooked up and the monitor for a 24 hour EEG. Ella's appointment is at 1:30 and

its about 30-40 minutes depending on traffic away from Makaela's appointment.

So hopefully things will be running on schedule and we'll make it on time.

Also, Ella has been waking up at night complaining that her stomach hurts.

Sometimes she says her stomach and her back hurt, but mainly its just her

stomach. She's not constipated or anything like that (she's still having

normal, regular bowel movements). I am going to bring it up to the dr tomorrow,

but could it be related to the JRA? Or the medicine? She only complains at

night though.

[Guest guest]

My daughter has a sed rate of 6 and then when diagnosed with a flare it was

21 , it has been 40

I was not keen on Injections but it was awesome for her she recovered quickly

from them. She had both ankles done. Don’t be freaked out. Metx was scared it

cleared her arthritis up and her iritis . I am sorry you are going through

that.

I know as mom we overthink it . I was a wreck from worry. I am glad you found

this support. I hope this guys by quickly. I found this room kept me sane. I

hope you find that too. Terri B

From:

Sent: Tuesday, February 22, 2011 11:08 PM

Subject: Tomorrow...

Ella has a follow up appointment tomorrow. She'll be seeing her pediatrician who

will talk to her rheumatologist. We were told they would draw blood to check her

liver (I believe...) because of the ibuprofen can cause side effects. I *think*

they said they'd also check her sed rate and c reactive protein again (I plan to

ask what her levels were last time just because I'm curious and didn't think to

ask before). I'm going to ask for copies of everything actually just because I

want to keep copies of everything just in case I need them in the future. If

there is one thing I've learned through all my experience with doctors, its that

they (doctors) don't know everything. I am the mother and I know my kids better

than they ever could. I am their advocate and I'm going to do what I have to to

make sure they get the best care possible. My second daughter has had quite a

few medical issues and has epilepsy now, my third daughter is healthy as can be

but has had several " fluke " things and has needed 7 surgeries (she's 6), and my

fourth daughter has asthma, so I'm not new to doctors/hospitals...neither is

advocating for my kids.

Anyway, the ibuprofen is obviously not working. Of course Ella had a really good

day today! Very little pain when she woke up. She ran and played for a pretty

long time at the park. It was AWESOME! Of course she still took 2 naps...2 and

2.5 hours and went to bed on time. She's tired a lot, but I guess that comes

with it. But, pain wise, she had an awesome day! I'm kinda worried that she'll

be having a good day tomorrow as well and the doctor won't take me seriously

when I tell her that she's still having pain and it hasn't gotten any/much

better with the ibuprofen. When she was diagnosed (1/21) the nurse from the

rheumatologist's office called and said that he wanted her on ibuprofen 3 times

a day every day for a month. After that she'd follow up with her pediatrician

and if she wanted her to continue the ibuprofen, she'd have to prescribe more.

If it was working, she may want to discontinue. If not, he suggested continuing

one more month then if she was still having problems to a repeat ultrasound of

her knee and if she still had fluid, do steroid injections. I've heard great

things about this doctor (he is a ped rheumy) but honestly, I " m not too thrilled

with that. I don't want to keep giving her ibuprofen for another month when its

clearly not working! If it was going to work, it would have worked by now. And

from what I've read (here and online) NSAIDs are like a bandaid...its not

helping anything really....well not " fixing " anything. And why do another

ultrasound? When he examined her he said he saw no signs of arthritis. He moved

all her joints all around and said she seemed fine. He ordered tests and her sed

rate and c reactive protein were both elevated and the x-ray of her right knee

showed an effusion. They did an ultrasound that confirmed that she did have an

effusion. Then he called and said with that information and the symptoms she'd

been having, he felt she DID have JRA. Which is what her pediatrician said she

suspected since about a month after her problems started (well, after she

started having episodes of pain in her knee (and then her other knee and ankle

as well, but the majority of the time, its her right knee that bothers her). She

also saw an orthopedic doctor who originally thought it was a viral infection,

but then when she had problems with her other knee and it lasted more than a few

weeks, she said she felt sure she had arthritis and agreed with her pediatrician

that she needed to be seen be a rheumatologist. It took months for her to get in

with a pediatric rheumatologist.

Anyway I'm rambling...sorry... I'm anxious for the appointment tomorrow. I'm

scared we might not make it on time and have to reschedule. DD#2 has an

appointment at 11:00 and they will be hooking up the EEG thing-a-ma-jiggies (I

have no clue what they are called...electrodes?) and she'll come home with it

hooked up and the monitor for a 24 hour EEG. Ella's appointment is at 1:30 and

its about 30-40 minutes depending on traffic away from Makaela's appointment. So

hopefully things will be running on schedule and we'll make it on time.

Also, Ella has been waking up at night complaining that her stomach hurts.

Sometimes she says her stomach and her back hurt, but mainly its just her

stomach. She's not constipated or anything like that (she's still having normal,

regular bowel movements). I am going to bring it up to the dr tomorrow, but

could it be related to the JRA? Or the medicine? She only complains at night

though.