Re: Systemic onset JRA (strep or not)

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In a message dated 12/26/03 9:10:02 PM Eastern Standard Time,

nikki228@... writes:

<<

I can only tell you what we've experienced with Gabby. She

wasn't officially diagnosed until after she had strep more

than 1/2 dozen times.

Was she treated with antibiotics with each infection? Did they have a

culture come back negative by throat, but positive by blood?

<< However, they assured us that she

didn't develop the arthritis from the untreated strep -

that she was born with the arthritis. Now how they tell

that is beyond me.>>

I am wondering that same thing. How do they tell if it's strep related or

she's born with it and it chose that time to reveal itself?

<<..however, hindsight is a great thing -

it came to our attention later that the pediatrician who

wouldn't treat Gabby for the strep (he said that kids under

2 never get strep " hello...can you say rheumatic fever " )

is also the same pediatrician that asked me if I was one of

those moms who like to see their child ill? >>

Hindsight (with Caitlin's current situation) makes me ill. I always think,

what if, what if what if. Though through friends and my own mind I have

answered the what if's and acted accordingly. I only wish the doctor had

started

her on antibiotics to be on the safe side. We never had a culture come back

with a false negative or false positive. They either had it and got treatment

and they were fine or they tested negative, had no meds and were fine. I try to

focus on the present, getting Caitlin better and keeping her and my other two

daughters healthy. Under 2 never get strep, WHAT kind of talk is that?????

Rheumatic Fever is one of the dx's they are still questioning in Caitlin's

case. Any one, at any age, can get Rheumatic Fever.

<< Needless to

say we never saw him again.>>

I certainly wouldn't have seen him ever again either!

<< My point being is that I'd

like to believe her rheumatologist when he said she was

born with it; but then again - it doesn't matter...it would

only probably make me more angry to know that she did

develop it from another person's incompetence towards my

child. It's just not worth it...the outcome today is the

same.>>

I agree.

<<Anyway, sorry for rambling...and if I confused you more.>>

Thank you for sharing your experience Tammy. I learn daily from everyone on

this list.

Take care.

Patty

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In a message dated 12/28/03 6:28:54 PM Eastern Standard Time,

nikki228@... writes:

<< Her culture always came back

negative for a " quick strep " test (still always does). For

some reason hers have to be " grown " for the 24 hours or be

taken by blood to show positive. >>

Interesting. Mine were always, in the past, shown true to what was going on.

If positive, antibiotics and they were fine. If negative, no antibiotics

and they were fine. This one has us all stumped. I guess, in the future, the

only thing I can do from here on out is if Caitlin (and maybe my two other

daughters) complains of a sore throat have a blood test to determine if she has

strep. Clearly, I can't rely on the throat culture. Well, actually, maybe I

would do that first and if it came back positive accept it, but if it comes back

negative request a blood test. I hope they don't cause any problems with my

requesting a blood draw with her recent history.

<< Also, when she has any

other type of infection we have to stop her Enbrel and that

sets us back that much more as well with the JRA.>>

That is a shame. To treat one thing is to set her back with another:

<<The initial visit to the pediatric rheumatologist she

currently sees now did sooooo many tests and there was a

conclusive test for if she was " born " with it or not. If

you'd like I can ask him what the name of the test is at

our next appointment (Jan. 19th).>>

That would be great Tammy:) I would like to know. It might even help to

determine if it's rheumatic fever, strep induced arthritis or JRA.

<<Patty, starting Caitlin on antibiotics earlier would not

have caused her JRA to be treated properly; so you can't

beat yourself up for that. There are some children who go

years and years and years before they are diagnosed. Just

thank God that she is being treated now and that you found

us : ) (lol) Remember, the outcome is the same - now just a

bit earlier.>>

Thank you Tammy, reading this means a lot to me, actually brings tears to my

eyes. I think you recognize my feelings of guilt. I am thankful that she is

being treated, from what I can tell, early. After reading about the little

one who was dx'd with JRA and actually had Leukemia, but it was too late, I

realize we are so very fortunate to have a doctor who is looking at everything.

Yes, I am thankful that I found you all too:) I know with any question I may

have, or concern, or rambling, you guys are here:) It means a lot to have

people who have experience with this and can share their experience, words of

wisdom and compassion with me:) I try to leave the past/hindsight behind me and

think of the today, getting Caitlin better and the future.

Is there a listing within here that tells what state everyone is from or is

that a no no on this list? Georgina would be the one to ask right?

Take care.

Patty