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Re: flare again (patti)

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In a message dated 1/23/04 9:26:21 PM Eastern Standard Time,

sonia1md@... writes:

<< Aundrea had a major flare last february. They thought it was scarlet fever

following strept throat. They did 2 rapid strep tests and grew two cultures

3 out of the 4 tests were negative. She had a full body rash that later

developed water blisters and then peeled until her skin felt like sand paper.

Seemed like classic scarlet fever. >>

Hi :

Because the 2 rapid tests came out negative did they start her on antibiotics

or not? If they didn't, how soon after the rash appeared did they treat her

with antibiotics?

<< Then in September she developed the

same high fevers, same rash, and more intense joint pain. Strep tests were

negative. (rapid and growth) They did blood work also. >>

With these strep tests being negative, did they treat her with any

antibiotics? Did they check her ASO or DNASE level in the blood for strep?

<<egative. (rapid and growth) They did blood work also.

Thats when she was sent to a rheumatologist. The fevers went

away and the body wide rash left. She now has a fleeting rash that comes

>>

How quickly did her fevers go away? Did they go away on their own, or help

with medicine? Did she have steroids for the rash? How long did it take for

the rash to leave. Sorry for the questions, but this sounds so much like

Caitlin. I want to know if there are other children like Caitlin out there who

presented similarly and how they have done.

<< She now has a fleeting rash that comes

and goes almost daily and joint pain that migrates quite frequently. Its

rare for her to have swollen joints but this week her wrist was red and

swollen and is still bothering her along with lots of other achey joints.>>

Caitlin has spots now only in the evening and usually on one or both hands.

Sometimes joint pain and some swelling, but sometimes no pain or swelling just

spots. Last night was the first time in a long time that she actually had a

small rash area on one hand. So far tonight, nothing showing, but it's still

early.

<<She gets frequent sorethroats and sometimes swollen lymph nodes but the

strep tests are always negative>>

I have had Caitlin swabbed twice already (her illness started in November)

and one sister twice within two weeks and her other sister once. I keep waiting

for the doctor's office to say " not again, your children don't need to be

swabbed, they were just swabbed " etc. Do you worry a lot about strep now?

<<don't know if this whole problem started out as a virus that awakened the

arthritis which was laying dormant. I guess that is one theory that is out

there.

>>

I have heard this theory too. That it lays dormant until an illness or

injury kicks it into overdrive.

<>

I know 's nephew had strep induced arthritis and is now doing great:)

Let's hope and pray it is the same for Aundrea and Caitlin.

<< I think they wait 6 months for

a child to have joint pain before labeling with the diagnosis. >>

Interesting. I didn't know they waited 6 months to determine diagnosis. We

still have a way to go.

Thank you for Caitlin's well wishes with school:) She will start off 1/2

days and work up to full days. When she comes home, I will make her rest. I

want her to ease back into everything, not push it.

Did you get snow? We got a light dusting today, enough to tease the girls

LOL. We are expecting 4 inches tomorrow - YEAH. The girls are psyched.

Take care.

Patty

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In a message dated 1/25/04 3:29:38 PM Eastern Standard Time,

sonia1md@... writes:

<< am not sure about the DNASE? Seems like they did check ASO but I dont

recall the results and I left all of her lab work at my office so I can't check

that right now.

>>

Hi :

I would be interested to know if her ASO was positive or negative. If you

don't mind, of course.

<< She was only on a 20 day taper down. The rash doesn't really bother

Aundrea. Most of the time she doesn't even

know that she has it. For some reason there are nights that it will itch

but this generally goes away by the next day.>>

So she is now completely off the steroids? Caitlin is on a 21 day taper,

tomorrow being her last dose, supposedly. She is scheduled to see the rheumy

tomorrow, but I don't know if we will be able to get there. We got our snow

YEAH, but tomorrow it's supposed to be an inch to two inches of ice down. Snow

is one thing, but ice, well, you can't do much to stop your car if you slide on

ice. I am hoping it will not come and if it does, that they rheumy can fit

her in somewhere this week. I want to have her seen, we need a script for 1/2

day school and limited writing, see if he's closer to a dx and get her recent

lab numbers.

Caitlin will have the rash/spots/itching at night only now. Weird, why does

it show at night and not during the day? I am thrilled it's not there in the

day time, but it would be great if it was gone at night too.

<< I do encourage Aundrea to use good handwashing and I worried when my

whole family had the flu. But, Aundrea was the only one to not get it.

(answered

prayer)

>>

Caitlin has gotten a whole refresher course from mom about washing hands,

don't put your fingers in your mouth, turn away if someone is coughing/sneezing

etc. She is a nail biter, but she seems to be learning to stop that -

hopefully she will have this habit broken by the time she returns to school.

Glad to

hear the Aundrea was spared the flu. Do you and/or your family get the flu

vaccine each year?

Take care.

Patty

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Hi Patty,

If Caitlin is taking her steroid dose in the a.m. only now maybe as the

strength of the medication decreases over time, through-out the day,

that might contribute to why she has the itchy rash only in the

night-time now? I remember once seeing a website that had the actual

half-lifes, I think it's called, for various arthritis medications. How

long they stay active in one's system. Arava, for instance, stays for a

very long time. There's a very long wash-out period. Prednisone stays

for much less time. Just a thought.

Take Care,

Georgina

Emeraldsx3@... wrote:

> Hi :

>

> I would be interested to know if her ASO was positive or negative.

If you

> don't mind, of course.

>

> So she is now completely off the steroids? Caitlin is on a 21 day

taper,

> tomorrow being her last dose, supposedly. She is scheduled to see

the rheumy

> tomorrow, but I don't know if we will be able to get there. We got

our snow

> YEAH, but tomorrow it's supposed to be an inch to two inches of ice

down. Snow

> is one thing, but ice, well, you can't do much to stop your car if

you slide on

> ice. I am hoping it will not come and if it does, that they rheumy

can fit

> her in somewhere this week. I want to have her seen, we need a

script for 1/2

> day school and limited writing, see if he's closer to a dx and get

her recent

> lab numbers.

>

> Caitlin will have the rash/spots/itching at night only now. Weird,

why does

> it show at night and not during the day? I am thrilled it's not

there in the

> day time, but it would be great if it was gone at night too.

>

> Caitlin has gotten a whole refresher course from mom about washing

hands,

> don't put your fingers in your mouth, turn away if someone is

coughing/sneezing

> etc. She is a nail biter, but she seems to be learning to stop that -

> hopefully she will have this habit broken by the time she returns to

school. Glad to

> hear the Aundrea was spared the flu. Do you and/or your family get

the flu

> vaccine each year?

>

> Take care.

> Patty

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In a message dated 1/26/04 8:02:03 PM Eastern Standard Time,

sonia1md@... writes:

<< I dont know what ASO stands for but I see they did a BASO test and she

was within normal limits. (is that the same thing?) >>

Hi :

I am not sure what the BASO test is, but the ASO is: A blood test to measure

anti-streptolysin O (ASO) antibodies in the blood. Alternative Names:

Anti-streptolysin O titer.

<< sure hope that you are able to keep her appointment and will have a safe

trip. Is Caitlin able to dictate her assignments to you? I have this as part

of Aundrea's 504 plan and there are many times that her wrist is bothering her

and so I write out the answers. I have also heard of kids using tape

recorders or having the teacher photo-copy notes for them. Did you see

Georgina's

post regarding only 6 weeks of continued joint pain/swelling needed to make a

jra diagnosis. I sure was wrong on that one.>

Thank you. We were able to make our appointment YEAH, I will post about it

after I answer some email, so far behind on them. The Asst. Principal has said

that they will adapt her writing work at school. The home bound teacher

writes for her if needed, so I will do the same. I don't think they will mind,

unless, of course, it's a writing excercise. I did see Georgina's post. Thank

you for double checking:)

Take care.

Patty

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