Re: In the days before our children became ill

[Guest guest]

I'm looking forward to the results! Thanks.

(Sam 5yrs systemic arthritis)

1. 1 year

2. Immunization (chicken pox) done on Tues 4/9/02 and symptoms developed

4/14/02 - Rash appeared first at the sight of injection, very red, raised and

the size of a quarter.

3. No illness prior

4. Enbrel.. helped for 1 year... Remicade.. helped for 2 yrs...

5. Travel approx. 65 miles

6. Virginia

In the days before our children became ill

Greetings to all - I know I have not been posting as much - but have been

reading. (Alot) I have started to research children who have developed JRA -

in the days and weeks prior to diagnosis. If this has been done on the

website - please tell me when- so I don't duplicate research. If and when you

all

have the time would you please answer the following questions. This

information will not be shared with anyone except the people who have access

to this

website.

1, Age of child upon first symptoms occurred.

2. Was immunizations done within a 6 week time that your child became sick.

3. Did your child have illness prior to 6 weeks of becoming ill.

4. What drug regimen has helped your child the most.

5. How far do you have to travel to see a rheumatologist?

6. What state do you live in?

I will wait two weeks before posting the results so as to give all members

times to share their information if they choose to. I won't list names just

the data given. Thanks Sandi Ken Hunter (8 Systemic)

[Guest guest]

>

> 1, Age of child upon first symptoms occurred. 7

>

> 2. Was immunizations done within a 6 week time that your child

became sick. no

>

> 3. Did your child have illness prior to 6 weeks of becoming ill.

yes she had chicken pox one month prior to first major jra flare.

She also had a recent case of strep throat prior to jra.(she had

received the chicken pox vaccine at age 2 but still developed a mild

case at age 7)

>

> 4. What drug regimen has helped your child the most. initially

methotrexate sub q (we discontinued mtx and restarted it 7 months

later..still having problems this go around)

>

> 5. How far do you have to travel to see a rheumatologist? 45

minutes..no pediatric rheumies yet in our state so we see and adult

rheumy.

>

> 6. What state do you live in?az

>

> I will wait two weeks before posting the results so as to give all

members

> times to share their information if they choose to. I won't list

names just

> the data given. Thanks Sandi Ken Hunter (8 Systemic)

>

>

>

[Guest guest]

1, Age of child upon first symptoms occurred.

8,first symptoms started in April over Easter vacation,she turned

9 October 17 and was diagnosed November 16

2. Was immunizations done within a 6 week time that your child became

sick.

No,last immunizations were before kindergarten

3. Did your child have illness prior to 6 weeks of becoming ill.

She had and ear infection and was put on antibiotics.Within a few

days her rash started

4. What drug regimen has helped your child the most.

She has only been on Kineret and it is wonderful

5. How far do you have to travel to see a rheumatologist?

403 miles to Boston, we live in western ny,horrible

rheumatologists here, would not diagnose her

6. What state do you live in?

New York

a (JORDAN,9,Systemic)

[Guest guest]

1, Age of child upon first symptoms occurred. 14

2. Was immunizations done within a 6 week time that your child became sick.

Nope, Last immunizations at age 11 for MMR booster.

3. Did your child have illness prior to 6 weeks of becoming ill. Nope, very

healthy child. Just sprung up.

4. What drug regimen has helped your child the most. Still waiting to find one.

Best drug Prednisone, but then also worst for side effects.

5. How far do you have to travel to see a rheumatologist? 1 hour depending on

traffic sometimes much more

6. What state do you live in? Washington

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[Guest guest]

1. age 2

2. no

3. yes(2 weeks prior) & an ankle injury the day before.

4. MTX & Enbrel

5. 35 miles and 307 miles

6. Tn.

Becki and 8 systemic

[Guest guest]

1. 7 and 1/2

2. do not think so

3. nothing besides congenital heart defects

4. MTX and Voltaren

5. a 45 minute drive (about 35 miles)

6. Kansas

From & Elaney(12 poly)

---------------------------------

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on Answers.

[Guest guest]

1. 2

2. no

3. no

4. MTX and Enbrel

5. 75 miles/1 1/2 to 2 hours

6. North Carolina

and Kaylee, 4, poly

In the days before our children became ill

Greetings to all - I know I have not been posting as much - but have been

reading. (Alot) I have started to research children who have developed JRA -

in the days and weeks prior to diagnosis. If this has been done on the

website - please tell me when- so I don't duplicate research. If and when you

all

have the time would you please answer the following questions. This

information will not be shared with anyone except the people who have access to

this

website.

1, Age of child upon first symptoms occurred.

2. Was immunizations done within a 6 week time that your child became sick.

3. Did your child have illness prior to 6 weeks of becoming ill.

4. What drug regimen has helped your child the most.

5. How far do you have to travel to see a rheumatologist?

6. What state do you live in?

I will wait two weeks before posting the results so as to give all members

times to share their information if they choose to. I won't list names just

the data given. Thanks Sandi Ken Hunter (8 Systemic)

[Guest guest]

1....5

2.....NO

3....NO

4..... Prednisone and remicade

5....about 25 miles..35mins

6. MN

hugs Helen and (9,systemic)

[Guest guest]

1. month before turning 13

2. no

3. no, but did have an injury to a joint, but not where the

arthritis first started

4. methotrexate

5. 6 miles

6. Illinois

Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of deerhuntert6@...

Sent: Sunday, December 03, 2006 8:26 PM

Subject: In the days before our children became ill

Greetings to all - I know I have not been posting as much - but have

been

reading. (Alot) I have started to research children who have developed

JRA -

in the days and weeks prior to diagnosis. If this has been done on the

website - please tell me when- so I don't duplicate research. If and

when you all

have the time would you please answer the following questions. This

information will not be shared with anyone except the people who have

access to this

website.

1, Age of child upon first symptoms occurred.

2. Was immunizations done within a 6 week time that your child became

sick.

3. Did your child have illness prior to 6 weeks of becoming ill.

4. What drug regimen has helped your child the most.

5. How far do you have to travel to see a rheumatologist?

6. What state do you live in?

I will wait two weeks before posting the results so as to give all

members

times to share their information if they choose to. I won't list names

just

the data given. Thanks Sandi Ken Hunter (8 Systemic)

[Guest guest]

1. 11

2. No

3. Probably

4. Celebrex & Plaquinil

5. 200 miles unless we can see her at the satelite office

6. Kansas

[Guest guest]

Hi-

1 Age 3-

2. Yes- symptoms appeared weeks after receiving Prevnar - meningitis vaccine

3. not really

4. nothing consistent - MTX and pred (unfortunately)

5. Only 15 minutes

6. CA

colleen

deerhuntert6@... wrote:

Greetings to all - I know I have not been posting as much - but have

been

reading. (Alot) I have started to research children who have developed JRA -

in the days and weeks prior to diagnosis. If this has been done on the

website - please tell me when- so I don't duplicate research. If and when you

all

have the time would you please answer the following questions. This

information will not be shared with anyone except the people who have access to

this

website.

1, Age of child upon first symptoms occurred.

2. Was immunizations done within a 6 week time that your child became sick.

3. Did your child have illness prior to 6 weeks of becoming ill.

4. What drug regimen has helped your child the most.

5. How far do you have to travel to see a rheumatologist?

6. What state do you live in?

I will wait two weeks before posting the results so as to give all members

times to share their information if they choose to. I won't list names just

the data given. Thanks Sandi Ken Hunter (8 Systemic)

[Guest guest]

Hi...here are my answers:

1. 11 years

2. No

3. Can't remember!

4. Just started-MTX

5. 90 miles to UCLA

6. California

Thanks for doing this!

(Clare 13 psoriatic)

-- In , deerhuntert6@... wrote:

>

> Greetings to all - I know I have not been posting as much - but

have been

> reading. (Alot) I have started to research children who have

developed JRA -

> in the days and weeks prior to diagnosis. If this has been done

on the

> website - please tell me when- so I don't duplicate research. If

and when you all

> have the time would you please answer the following questions.

This

> information will not be shared with anyone except the people who

have access to this

> website.

>

> 1, Age of child upon first symptoms occurred.

>

> 2. Was immunizations done within a 6 week time that your child

became sick.

>

> 3. Did your child have illness prior to 6 weeks of becoming ill.

>

> 4. What drug regimen has helped your child the most.

>

> 5. How far do you have to travel to see a rheumatologist?

>

> 6. What state do you live in?

>

> I will wait two weeks before posting the results so as to give all

members

> times to share their information if they choose to. I won't list

names just

> the data given. Thanks Sandi Ken Hunter (8 Systemic)

>

>

>

[Guest guest]

1, Age of child upon first symptoms occurred. 10 months

2. Was immunizations done within a 6 week time that your child became sick.

Probably, because she had immunizations done at 9 months.

3. Did your child have illness prior to 6 weeks of becoming ill. Nope -

perfectly healthy.

4. What drug regimen has helped your child the most. Nothing really - currently

" stable " on mtx and Enbrel, but still has swelling in the toes.

5. How far do you have to travel to see a rheumatologist? 30 minutes (Primary

Children's Medical Center)

6. What state do you live in? Utah

[Guest guest]

Hi everyone! Sorry I haven't posted in a while; I have been reading

and praying with you all though! Here are Abby's stats for the poll:

1 Age of child upon first symptoms occurred. The big flare (lots

of swelling and difficulty walking) began at 21 months, but she had

some morning stiffness back at 18 months

2. Was immunizations done within a 6 week time that your child

became sick. Yes, her 18 month old shots were given (four, I

believe)...if you want to know which ones I can look them up for you!

3. Did your child have illness prior to 6 weeks of becoming ill.

Yes, she was hospitalized three times in the three months prior to

her first big flare; once with pneumonia, once with a high fever and

rash (I know this is usually a big red flag but she had some morning

stiffness before this), and once with reactive asthma

4. What drug regimen has helped your child the most. She has only

been treated with naproxen which is finally at a high enough dose to

keep her comfortable (or her flare is subsiding, either way is good

news)

5. How far do you have to travel to see a rheumatologist? An hour

away, approximately 50 miles?

6. What state do you live in? MA

Thanks Sandi for doing this; I am interested in seeing the results

Christie, poly JRA in remission since childhood

Mom to Abby, pauci JRA in one knee, age 2

[Guest guest]

JRA Survey:

My son's symptoms appeared when he was 11 years old.

He was not immunized for anything in the 6 weeks before he got sick.

He was very sick before with a horrible g.i. bug that got everyone in our

household. It was a 3 day vomiting and diarreaha bug, but it hit my son really

hard. About 3 weeks later his knee started hurting and swelling. Within 2

weeks he was bedridden with pain in almost every joint.

He is getting relief from Enbrel. It is working well.

We live in Florida

We travel 20 minutes to see a ped rheumy.

Thanks.

Tamara and Max Poly JRA age 12.

---------------------------------

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[Guest guest]

1, Age of child upon first symptoms occurred. - 18 months

2. Was immunizations done within a 6 week time that your child became sick -

No

3. Did your child have illness prior to 6 weeks of becoming ill - Yes, ear

infection

4. What drug regimen has helped your child the most. - Remicade, Prednisone,

MTX, Cyclosporine

5. How far do you have to travel to see a rheumatologist? - 20 miles (I know

we are lucky)

6. What state do you live in? - Minnesota

Alia and Caroline, age 4 1/2, poly and uveitis

[Guest guest]

In a message dated 12/3/2006 9:39:06 P.M. Eastern Standard Time,

deerhuntert6@... writes:

1, Age of child upon first symptoms occurred. 8 months

2. Was immunizations done within a 6 week time that your child became sick.

no

3. Did your child have illness prior to 6 weeks of becoming ill. at the

time of symptom onset she had a UTI

4. What drug regimen has helped your child the most. its was mtx and

motrin for years, then about 2 and a half years ago it stopped being as

effective, and we have yet to achieve great control since.

5. How far do you have to travel to see a rheumatologist? about 30 minutes

6. What state do you live in? MA

[Guest guest]

> >

> > 1, Age of child upon first symptoms occurred. 5 y/o.

> >

> > 2. Was immunizations done within a 6 week time that your child

> became sick. No.

> >

> > 3. Did your child have illness prior to 6 weeks of becoming ill.

Nothing remarkable, but I can't say she didn't have a cold or rrunny

nose.

> >

> > 4. What drug regimen has helped your child the most. A short

liquid diet/antibiotics.

> >

> > 5. How far do you have to travel to see a rheumatologist? About 5

miles, but he's not pediatric. Ped rheumy not covered by insurance.

> >

> > 6. What state do you live in? NC

> >

>

[Guest guest]

In Regards to my daughter, Abbie:

1, Age of child upon first symptoms occurred.

***** 10

2. Was immunizations done within a 6 week time that your child became sick.

***** no

3. Did your child have illness prior to 6 weeks of becoming ill.

*****No, but in the diagnosis stage, tests showed high strep titres and a staph

infection

4. What drug regimen has helped your child the most.

***** We started with high aspirin doses. Worked for 3 days. Went to prednisone.

At diagnosis added Mtx, folic acid and celebrex. Went to subq mtx. Added

Plaquenil. Prednisone was up and down (mostly up) until the Remicaide was added.

She was off the prednisone within 6 months. Got off mtx about 6 months ago due

to terrible stomach upset. Threw up every time. Now she is on Imuran, Nabumetone

(NSAID) and Remicaide.

Abbie has since been diagnosed with Osteoporosis and spondy, in addition to her

systemic jra.

5. How far do you have to travel to see a rheumatologist?

***** 45 minutes now, when we lived in South Dakota we traveled 3 hours to Omaha

Childrens.

6. What state do you live in?

***** PA