Re: Please respond: JRA Survey

August 19, 1999

Child's first name: Grace

Parent's first name:

Onset of JRA: 4 years, 3 months

Child's age now: 5 yrs.

Length of JRA: 10 months

Child's weight: 33 lbs.

Current Meds:

3/4 t. Naprosyn morning & night

1 1/4 pred. once a day

7.5 (three tablets) MTX on Friday nights

Vitamin w/400 micrograms folate once a day

~ No alternative meds used -- except tons of veggies and fruits

Grace is currently considered to be in a " medicated remission. "

August 20, 1999

Georgina wrote:

> Child's First name:

> Parent's First Name: Tracey

>

> Child's age at JRA onset: 6

>

> Child's current age: 9

>

> Length of time with JRA (years/months): 3 yrs. 4 months

>

> Child's weight: 68 lbs

>

> Current Medications/Supplements and the frequency/dosages:

> 1. folic acid - once a day

> 2. mtx - every Sat. 60 units orally

> 3. naproxyn 3 tsp morning, 2 tsp. nightly

> 4. Zantac - 1/2 tsp prior to each naproxyn

> 5.

> 6.

> 7.

> 8.

> 9.

> 10.

>

> Any Alternative Remedies Used?

> If yes, please list:

> 1. We use to give her cod liver oil but she had a hard time with the

> taste.

> 2.

> 3.

>

> Any Periods of Remissions When Meds Were Not Necessary?

> If yes, how long did they last?: No

>

> Any Assistive Devices Used? : No

>

> Any Surgeries Required? : No

>

> Any other questions?: No

August 20, 1999

>

> > Child's First name: Leigh-Ann

>

> > Parent's First Name:

> >

> > Child's age at JRA onset: 2

> >

> > Child's current age: 13

> >

> > Length of time with JRA (years/months): 10 years 4 months

> >

> > Child's weight: 73 lbs

> >

> > Current Medications/Supplements and the frequency/dosages:

> > 1. folic acid - once a day

> > 2. mtx - every Thurs. 10 mg

> > 3. naproxyn 1/2 tablet twice a day

> > 4. Cytotec 100 mg twice a day

> > 5. Cyclosporine 25 mg in the a.m. 50 in the p.m.

> > 6.

> > 7.

> > 8.

> > 9.

> > 10.

> >

> > Any Alternative Remedies Used?

> > If yes, please list:

> > 1. None.

> > 2.

> > 3.

> >

> > Any Periods of Remissions When Meds Were Not Necessary?

> > If yes, how long did they last?: Twice, the both last @ months but

meds were necessary

> >

> > Any Assistive Devices Used? : Splints

> >

> > Any Surgeries Required? : Yes

> >

> > Any other questions?: No

>

> ---------------------------

August 22, 1999

Child's First name:

Parent's First Name: Regina and Dave

Child's age at JRA onset: 13 Months

Child's current age: 2 years

Length of time with JRA (years/months): 1 year

Child's weight: 22-23 lbs

Current Medications/Supplements and the frequency/dosages:

1. None, but will start again on Methotrexate 2.5 mg/week (injected)

and Folic Acid 1mg/day

2. sometimes Motrin 5 mg, if needed

3. will have Joint Injections on Sept. 10/99

4.

5.

6.

7.

8.

9.

10.

Any Alternative Remedies Used?

If yes, please list:

1. Chiropractic care since Mar. 1999

2. Ester c 50 mg / day

3. Vitamin B 5mg / day

4. Physiotherapy twice a week in a pool

Any Periods of Remissions When Meds Were Not Necessary?

If yes, how long did they last?: She was in remession for 4 months, without

medication, prior she was on Methotrexate 2.5 mg oral and Folic Acid 1mg

/day. She was also on Motrin 4 times a day (5mg each time). Took her first

of Motrin and then of Methotrexate. Started with new inflammention in July

1999.

Any Assistive Devices Used? : None

Any Surgeries Required? : None

Any other questions?: No

Reply Reply All Forward Delete Previous Next Close

>From: Georgina <gmckin@...>

>Reply- onelist

> < onelist>

>Subject: [ ] Please respond: JRA Survey

>Date: Wed, 18 Aug 1999 20:04:18 -1000

>

><< text1.html >>

August 23, 1999

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

& nbsp;

& nbsp;

<blockquote TYPE=CITE>Child's First name:

Parent's First Name: Georgina

Child's age at JRA onset: 6 years

Child's current age: 10 years

Length of time with JRA (years/months): 4 years, 3 months since JRA

started

Child's weight: 67 pounds

Current Medications/Supplements and the frequency/dosages:

1.prednisone & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 25mgs

a day

2.indomethacin & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 25mgs twice a day

3.folic

acid & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

1mg every day except day of MTX

4.MTX & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

; & nbsp; & nbsp; & nbsp; & nbsp;

(equivalent to 15mgs... .6cc's, I think) now injected, every Thursday

5.Plaquinel & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

;

alternate100/200mgs & nbsp; once a day

6.cytotec & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp;

100mcgs twice a day

7.iron & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbs\

p; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

250mgs a day

8.calcium & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \

nbsp; & nbsp;

500mgs a day

9.miacalcin & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\

;

1 squirt a day

10.

Any Alternative Remedies Used?

If yes, please list: NO

1.

2.

3.

Any Periods of Remissions When Meds Were Not Necessary?

If yes, how long did they last?: Josh has had lots of medicated remissions,

lasting up to several months at a time but never has been able to stop

the meds.

Any Assistive Devices Used? : Wrist Splints

Any Surgeries Required? :NO

Any other questions?:</blockquote>

</html>

August 23, 1999

Childs name:

Parents name:

Age at onset: 3

Current age: 4

Length of time with JRA: 4 1/2 months

Weight: 38lbs

Current meds:

1. Decadron (dexamethasone) 8mg X 3 week (Pic line)

2. Decadron 1/2mg X 4 weekly (oral tab)

3. Prilosec 20 mg X 1 daily (oral tab)

4. Calderol (vit D supplement)

List side effects you notice with medicines: Increased appetite. Hair

growth. Weight gain. Mood swings. Forcefulness.

Alternative remedies:

1. Chiropractic care X 1 weekly

2. Multi vitamin with iron

3. Vitamin C 250 mg a day

4. Milk Thistle 8 drops X 3 daily (to help liver function)

5. Chewable acidofilus

6. 1 Tab flax oil (high in omega three fatty acids) when I can slip it into a

smoothie.

Any reemissions: It seems like she has one right now. First one since onset.

Any assistive devices: No

Any surgeries: No

Current Sed rate : last done three weeks ago was at 74

Highest Sed rate: 90 at onset

Lowest Sed rate: 47

Current medical tab: $100,000

Any family members have anything similar or related i.e.. Fibromalgia etc. or

other auto immune illnesses: No

Length of time to diagnose: one month

Length of time with stiffness in the AM: None at the moment

Is your child small for their age? If so what percentile are they in if you

know: 20th

Does it seem like your child gets sick more often than other kids: No

Leading up to this illness how would you rate your childs health on a scale

of 1 -3. One being the worst: 3

Where do you live: Chicago, USA (and sometimes Utah, USA)

Have you noticed a change with symptoms based on the weather? No

September 15, 1999

Child's First name: Sara

Parent's First Name: Afsi & Bob

Child's age at JRA onset: at 19 months of age she was diagnosed with

Polyarticular JRA but we started noticing

the problem when she was 15 months(It took the stupid doctors 5 months to figure

it out- they thought she had

behavioral problems!!!!)

Child's current age: 3 years and 3 months

Length of time with JRA (years/months): 2 years and 8 months

Child's weight: 32 pounds

Current Medications/Supplements and the frequency/dosages:

1. Methotrexate (5 mg/week)

2. Folic acid (1mg/daily)

3. Sesamee street Vitamin supplements

4. Mineral oil (for constipation) (1 1/2 tsp/daily)

5. Zantac (1/2 tsp/daily -- but coming off of it)

6.

7.

8.

9.

10.

Any Alternative Remedies Used? No

If yes, please list:

1.

2.

3.

Any Periods of Remissions When Meds Were Not Necessary? No- but with MTX she has

very minimal

swelling in her hands and no place else. Also no pains or stiffness at all

(Thank God!!!)

If yes, how long did they last?:

Any Assistive Devices Used? : No

Any Surgeries Required? : No

Any other questions?: Is anybody's case similar to Sara's who has been

experiencing remission without being on MTX?

if yes, how long was the child on MTX before complete remission was experienced.

Please reply if you have any ideas.

Thanks.

September 28, 1999

Child's first name:

Parent's first name: N/A

Onset of JRA: 8 YEARS

Child's age now: 25 YEARS.

Length of JRA: 16 YEARS

Child's weight: N/A.

Current Meds: ARAVA

Some periods of remission, One time lasted for almost 6 years. But is no

longer the case.

My webpages:

http://fadedjeans.com/jraworld

http://www.bmi.net/acnelson

Sign In

Re: Please respond: JRA Survey

Recommended Posts

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity