Re: # 1 Survey 8-2000-(Please fill out if you havent done so yet)

[Guest guest]

Name: contessa12399@...

City & State: , California

Age: 7

Illness: systemic JRA

When Did It Start: August of 98

Were There Any Symtoms Prior To Onset: no

Medication On Now: Methotrexate, Enbrel, Naprosyn, Folic Acid, multi-

vitamin with iron

What side effects does the child have on medication:

mouth ulcers, brusing at injection sites

What color hair does child have: brown

What color eyes: brown

Child Up To Date On Immunizations: yes

Has the child had any childhood diseases:

(Which) asthma, eczema, chicken pox

Is your child allergic to any immunization shot: no

Is your child allergic to anything: no

Has child been exposed to anything or has had:

Flu: no

Chicken Pox: yes

Menigitis: no

Add any to this:

Child full term or premature: full term

Weight of child at birth: 6 lbs

Height of child at birth: 21 inches

Any complications during birth: no

What was the stay of the child at the hospital at birth: 1 day

What hospital was child born: Doctors Medical Center, Modesto, CA

What percentile is the child in height and weight:

What age did the child crawl:

What age did the child walk: 13 months

What age did the child start talking:

Did you drink during pregnacy: no

Did you smoke during pregnancy: yes

Did you take anything to get pregnant: no

Did you use birth control: no

(if so what kind)

Was this a happy pregnancy: very stressful, had a stillbirth just a

few months before getting pregnant again, was very worried that I

would loose this baby too.

Which line is this child first born 2 3 4th Last: 4th

Does the child have any more health problems other than JRA?

( if so please list)

none, had asthma, numerous ear infections, colic (for the first 3

months only), all the above went away with the onset of JRA

How is the child doing now: great

walking:yes

Talking:yes

Motor skills: yes

Hand eye cooranation: great

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister,

Aunts, Uncles

or Cousins have or had any or the following ( put the person who has

it next

to it)

Arthritis:no

Asthma: cousin

JRA:no

Diabetes: aunt

Gout: grandfather

TB:no

Shingles: aunt

Stomach Problems:no

ADHD:cousin

Osteroarthritis:no

Eye Problems: no, other than grandparents wearing glasses

Metobolic Problems:no

Sickle Cell:no

Thrombosis:no

Heart Trouble:no

Emphysema:no

Lung Problems no

Kidney Trouble: one past kidney infection, mother

Add any if it aint listed:

Has the child had any broken bones:no

Has the child had any sprains:no

Has the child had any hard bruises: no

Was the child breast fed:no

Was the child bottle fed: yes

If bottle fed what was the formula: similac and some other brand, I

think carnation

What age did the child start eating baby food: 3 months

What kind of food did they eat: applesauce at first

Has the child had ear infections: yes

How often: continous the first three years of life

Has the child had urinary tract infections: no

How many:

Has the child had the croup: no

Has the child had any other infections: no

if so what was the antibotic

Can you list all medications the child took before onset of symtoms

to JRA:

( if you use a pharmacy they may keep a list)

amoxicillin

penicillin

ceclor

keflex

Albuterol

Atrovent

How often was the child seen in a E R before onset of JRA: one

What was diagnosis: child fell and busted her lip, no stitches needed

How often was the child seen in the doctors office before onset of

JRA:

tons, due to ear infections, asthma, etc.

Was or is the child at any day care centers: yes is currently and at

the time of onset.

Is the childs enviroment Big City, Small Town, Rural, or Country:

(suburb) small town, under 11,000

Does the child live near any Factorys, Plants, Airports:

If so how close: agricultural airport

Does the child drink City water, Well Water or Bottled water:

( or has in the past) bottled water

Does the child eat any packaged meats: yes

( frozen at the store already if so which brand) Hillshire Farms

Does the child eat canned veggies: yes

if so what brands) green giant

Does the child eat more fried foods: yes

Does the child eat more boiled or broiled foods: no

What other foods does the child eat:

(What brand)

Does the child live in Air Condition:at the time of onset yes, now no

Does the Child have Carpet or Hard wood flooring: hardwood

Electric or Gas stove:gas

Does the child eat foods Microwaved:yes

Now This Is For ALL

What cleaning products do you use in the house:windex, bleach

Have you cleaned your carpets or do you have a company do it:

Has the child been exposed to LEAD or paints with lead in it: no

Has the child been Exposed to Abestos:no

Does the child take or has taken vitamins: yes store brand with iron

(If so what brand)

How often does the child eat junk foods:

( Sweets, Potatoe Chips, ETC...) daily, at lunch

What do you wash the clothes in: Surf

(Brand)

What kinds of chemicals are around the house: cleaning products

When you took the child to the doctor for this problem what was the

doctors

reaction: arthritic reaction to a virus

Was the child promptly examined:yes

What did the Doctor say it was the first time: to wait it out, it was

a virus and that it will go away

What were the first blood tests given to check: blood work ordered

by the ped rheumy 6 weeks later, prior to her first appt with them

What is the childs tests now:

What was the childs tests at onset:

You can give the tests done and the number here onset and now:

How long are the flare ups: two flares , lasting from a few weeks to

a month

Does weather play a role with flare ups: no

How long are the remissions: one year

Do you use self remedys: reflexology, i don't know if it works, but

she likes her feet rubbed and its a good time for us to share together

Has your child used or useing a wheelchair: no

Has your child used braces or useing them now: no

What other assistants does your child use: none

What is the pain rate for your child most days:

( 1 - 10 10 being worse) now 0, during a flare 8

How is your child in the mornings with stiffenss: she has been doing

great since starting on the Enbrel

Is there a time of day thats worse for your child: dinner time, she

is exhausted

Does it seem like your child gets sicker more than other kids: not

now, yes before she started JRA

How long did it take to get a diagnosis: 6 weeks from onset of neck

stiffness

Does the Doctor seem compassionate with your concerns: yes

Does your child see a physical therapist: has been dismissed from pt,

but had it regularly, 2 times a week, for two years, and OT once a

week

(if so how long seeing the P T)

Does your child see a Occupational Therapist:

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child: yes

How far do you have to travel for visits to the Rhuemy Doctor: 3 hours

one hour by car, one hour by subway, one hour by city bus in San

Francisco

How far do you travel to see the P T or O T: 1/2 hour

How often are each trip: rheumy every three months

Do you get questioned from school personel due to school absents: no

Do you have a good school staff that understand: somewhat

Do you have a school nurse at your childs school: yes

Do you feel the school is helping you and your child: somewhat

Does your child ride a school bus or do you take the child to school:

she attends daycare onsite of the school grounds.

How often is the child out of school for Doctor visits:average twice

every three months

How often is the child out of school due to illness: once every three

months

(Explain cold Or JRA ETC... )

How often is child out of school total in a school year: 9

Does your child participate in P E: the school evaluated her and even

though her pediatric rheumy indicated no P.E. they decided that she

was not disabled enough to be in adaptive P.E., so if she is feeling

especially sore or stiff, it is in her 504 plan that all I have to do

is write a note excusing her from physical activity.

If i have forgot anything that you want to add please add it here

feel free to:

Message 6926 of 6933

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>

> This is a survey for this group

> to see if theres any comparison

> if so we can check into it deeper

> Where the name is put the Email address

> We dont want the REAL name

> Please take it you would be amazed

> at what this could do :-)

> To take it you Copy and Paste

> And send back

> We can compare

> Robbin

>

>

>

> Name:

> City & State:

> Age:

> Illness:

> When Did It Start:

> Were There Any Symtoms Prior To Onset:

> Medication On Now:

> What side effects does the child have on medication:

>

> What color hair does child have:

> What color eyes:

>

> Child Up To Date On Immunizations:

> Has the child had any childhood diseases:

> (Which)

> Is your child allergic to any immunization shot:

> Is your child allergic to anything:

> Has child been exposed to anything or has had:

> Flu:

> Chicken Pox:

> Menigitis:

> Add any to this:

>

> Child full term or premature:

> Weight of child at birth:

> Height of child at birth:

> Any complications during birth:

> What was the stay of the child at the hospital at birth:

> What hospital was child born:

> What percentile is the child in height and weight:

> What age did the child crawl:

> What age did the child walk:

> What age did the child start talking:

> Did you drink during pregnacy:

> Did you smoke during pregnancy:

> Did you take anything to get pregnant:

> Did you use birth control:

> (if so what kind)

> Was this a happy pregnancy:

> Which line is this child first born 2 3 4th Last:

>

> Does the child have any more health problems other than JRA?

> ( if so please list)

>

>

> How is the child doing now:

> walking:

> Talking:

> Motor skills:

> Hand eye cooranation:

>

>

> Family History

>

> Does Grandfather, Grandmother, Father, Mother, Brother, Sister,

Aunts, Uncles

> or Cousins have or had any or the following ( put the person who

has it next

> to it)

>

> Arthritis:

> Asthma:

> JRA:

> Diabetes:

> Gout:

> TB:

> Shingles:

> Stomach Problems:

> ADHD:

> Osteroarthritis:

> Eye Problems:

> Metobolic Problems:

> Sickle Cell:

> Thrombosis:

> Heart Trouble:

> Emphysema:

> Lung Problems

> Kidney Trouble:

> Add any if it aint listed:

>

>

>

> Has the child had any broken bones:

> Has the child had any sprains:

> Has the child had any hard bruises:

>

> Was the child breast fed:

> Was the child bottle fed:

> If bottle fed what was the formula:

> What age did the child start eating baby food:

> What kind of food did they eat:

>

> Has the child had ear infections:

> How often:

> Has the child had urinary tract infections:

> How many:

> Has the child had the croup:

> Has the child had any other infections:

> if so what was the antibotic

> Can you list all medications the child took before onset of symtoms

to JRA:

> ( if you use a pharmacy they may keep a list)

>

>

> How often was the child seen in a E R before onset of JRA:

> What was diagnosis:

> How often was the child seen in the doctors office before onset of

JRA:

>

>

> Was or is the child at any day care centers:

> Is the childs enviroment Big City, Small Town, Rural, or Country:

> (suburb)

> Does the child live near any Factorys, Plants, Airports:

> If so how close:

> Does the child drink City water, Well Water or Bottled water:

> ( or has in the past)

> Does the child eat any packaged meats:

> ( frozen at the store already if so which brand)

> Does the child eat canned veggies:

> if so what brands)

> Does the child eat more fried foods:

> Does the child eat more boiled or broiled foods:

> What other foods does the child eat:

> (What brand)

>

> Does the child live in Air Condition:

> Does the Child have Carpet or Hard wood flooring:

> Electric or Gas stove:

> Does the child eat foods Microwaved:

>

>

>

> Now This Is For ALL

> What cleaning products do you use in the house:lysol windex

> Have you cleaned your carpets or do you have a company do it:self

>

> Has the child been exposed to LEAD or paints with lead in it:

> Has the child been Exposed to Abestos:

> Does the child take or has taken vitamins:

> (If so what brand)

> How often does the child eat junk foods:

> ( Sweets, Potatoe Chips, ETC...)

> What do you wash the clothes in:

> (Brand)

> What kinds of chemicals are around the house:

>

> When you took the child to the doctor for this problem what was the

doctors

> reaction:

> Was the child promptly examined:

> What did the Doctor say it was the first time:

> What were the first blood tests given to check:

> What is the childs tests now:

> What was the childs tests at onset:

> You can give the tests done and the number here onset and now:

>

> How long are the flare ups:

> Does weather play a role with flare ups:

> How long are the remissions:

> Do you use self remedys:

>

> Has your child used or useing a wheelchair:

> Has your child used braces or useing them now:

> What other assistants does your child use:

>

> What is the pain rate for your child most days:

> ( 1 - 10 10 being worse)

>

> How is your child in the mornings with stiffenss:

> Is there a time of day thats worse for your child:

> Does it seem like your child gets sicker more than other kids:

> How long did it take to get a diagnosis:

> Does the Doctor seem compassionate with your concerns:

> Does your child see a physical therapist:

> (if so how long seeing the P T)

> Does your child see a Occupational Therapist:

> (if so how long seeing O T)

>

> Do you feel you are getting the best treatment for your child:

>

>

> How far do you have to travel for visits to the Rhuemy Doctor:

> How far do you travel to see the P T or O T:

> How often are each trip:

>

> Do you get questioned from school personel due to school absents:

> Do you have a good school staff that understand:

> Do you have a school nurse at your childs school:

> Do you feel the school is helping you and your child:

> Does your child ride a school bus or do you take the child to

school:

>

> How often is the child out of school for Doctor visits:average

> How often is the child out of school due to illness:

> (Explain cold Or JRA ETC... )

> How often is child out of school total in a school year:

> Does your child participate in P E:

>

>

>

>

> If i have forgot anything that you want to add please add it here

> feel free to:

[Guest guest]

In a message dated 9/8/00 8:05:31 AM Mountain Daylight Time, Robbin40@...

writes:

<< Name: JANABECKER@...

City & State: Boise, ID

Age: 13, boy

Illness: Poly JRA

When Did It Start: 5 years ago, 1995

Were There Any Symtoms Prior To Onset: yes, weight loss and sore ankles

Medication On Now: Methotrexate, Enbrel, Prednisone, Clinoril

What side effects does the child have on medication: Not much, some

stomach upset. Small size.

What color hair does child have: Light brown

What color eyes: Green

Child Up To Date On Immunizations: yes

Has the child had any childhood diseases: Only Chicken Pox

(Which)

Is your child allergic to any immunization shot: No

Is your child allergic to anything: No

Has child been exposed to anything or has had:

Flu: yes

Chicken Pox: yes

Menigitis:no

Add any to this: Giardia at onset of JRA

Child full term or premature: full term

Weight of child at birth: 8lbs, 10oz

Height of child at birth: 23 "

Any complications during birth: manually turned at birth because he was

breech

What was the stay of the child at the hospital at birth: 2 days

What hospital was child born: St. Lukes, Boise, ID

What percentile is the child in height and weight: 10% height, less then 5%

weight

What age did the child crawl: 6 mos

What age did the child walk: 12 mos

What age did the child start talking: 2 years

Did you drink during pregnacy: no

Did you smoke during pregnancy: no

Did you take anything to get pregnant: no

Did you use birth control: no

(if so what kind)

Was this a happy pregnancy: yes

Which line is this child first born 2 3 4th Last: 2nd and last

Does the child have any more health problems other than JRA? no

( if so please list)

How is the child doing now:

walking: good

Talking: does have a slight speech problem, can be hard to understand, not

correctable by speech therapy, think it is due to inflamation in nasal lining

etc.

Motor skills: good

Hand eye cooranation: excellant

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts,

Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis:

Asthma:

JRA:

Diabetes: Grandfather, very late onset

Gout:

TB:

Shingles:

Stomach Problems:

ADHD:

Osteroarthritis:

Eye Problems:

Metobolic Problems:

Sickle Cell:

Thrombosis:

Heart Trouble:

Emphysema:

Lung Problems

Kidney Trouble: Grandfather and Grandmother had kidney cancer, I believe this

has to be environmental

Add any if it aint listed:

Has the child had any broken bones: no

Has the child had any sprains: no

Has the child had any hard bruises: no

Was the child breast fed: yes

Was the child bottle fed: yes, after 6 mos

If bottle fed what was the formula: Similac w/ iron

What age did the child start eating baby food: 6 mos

What kind of food did they eat: fruit, veggies baby food,

cereal. Meat babyfood added at 9 mos

Has the child had ear infections: yes

How often: tons! Had tubes put in as a last resort

Has the child had urinary tract infections: no

How many:

Has the child had the croup: no

Has the child had any other infections:

if so what was the antibotic

Can you list all medications the child took before onset of symtoms to JRA:

( if you use a pharmacy they may keep a list)

Only antibiotics, believe we used all available for children. Had to change

because his ear infections would not clear. Baby Tylenol.

How often was the child seen in a E R before onset of JRA: none

What was diagnosis:

How often was the child seen in the doctors office before onset of JRA:

Many, but only well baby and ear infections. 10 times in the 6 mos

prior to diagnosis.

Was or is the child at any day care centers: yes

Is the childs enviroment Big City, Small Town, Rural, or Country:

(suburb) med city, rural

Does the child live near any Factorys, Plants, Airports: no

If so how close:

Does the child drink City water, Well Water or Bottled water: city and

bottled.

( or has in the past) 1.5 years ago, well 10 yrs

Does the child eat any packaged meats: yes, no regular brand, not store brand

( frozen at the store already if so which brand)

Does the child eat canned veggies: yes, in winter. Name brands.

if so what brands)

Does the child eat more fried foods: some, only away from home

Does the child eat more boiled or broiled foods: both

What other foods does the child eat:

(What brand) he doesn't eat large quantities, but he eats almost everything.

Favorites: Meat (the rest of us eat very little), subs with lots of

turkey/ham and mayo, shrimp, rice (most days, prefers over fries), beans,

Mexican, BBQ sauce on everything,

artichokes and most veggies, loves sour/hot/spicy, ice cream, meat lovers

pizza,

sour candy, pasta. My husband is a gourmet cook, uses many different products,

we cook mainly from scratch.

Does the child live in Air Condition: up stairs only... FYI, we have

geothermic

heat and hot water (natural hot water)

Does the Child have Carpet or Hard wood flooring: mostly hardwood

Electric or Gas stove: yes

Does the child eat foods Microwaved: yes

Now This Is For ALL

What cleaning products do you use in the house:lysol windex, never use the

same,

buy what's on sale

Have you cleaned your carpets or do you have a company do it: company,

basement play area only

Has the child been exposed to LEAD or paints with lead in it: don't think so

Has the child been Exposed to Abestos: don't think so

Does the child take or has taken vitamins: yes, Flintstones

(If so what brand)

How often does the child eat junk foods: daily

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in: Tide, or what ever is on sale

(Brand)

What kinds of chemicals are around the house: bug and weed killers. Bugs

are not bad here, so not used often.

When you took the child to the doctor for this problem what was the doctors

reaction: 10 visits for losing weight, sore ankles, no diagnosis. Only

diagnosed

when he couldn't open his fingers.

Was the child promptly examined: yes

What did the Doctor say it was the first time:

Wear high top tennis shoes for his ankles, may want to get counseling, sore

ankle moves from one leg to the other.

What were the first blood tests given to check: NOT parasites or JRA.

Cancers

etc.

What is the childs tests now:

What was the childs tests at onset:

You can give the tests done and the number here onset and now:

How long are the flare ups: 2 to 4 weeks

Does weather play a role with flare ups: yes, worse in cold

How long are the remissions: Haven't had, but we are close now

Do you use self remedys: no

Has your child used or useing a wheelchair: no

Has your child used braces or useing them now: yes, in the past

What other assistants does your child use: no

What is the pain rate for your child most days: 2 now

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss: stiff until he takes a

shower, 1/2 hour

Is there a time of day thats worse for your child: just when he gets up

Does it seem like your child gets sicker more than other kids: not really,

but he is

tough. Goes to school etc even when he is sick

How long did it take to get a diagnosis: 6 mos

Does the Doctor seem compassionate with your concerns: now, yes.

Does your child see a physical therapist: No, but has

(if so how long seeing the P T)

Does your child see a Occupational Therapist: No, but has

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child: yes, since we

decided to travel to Seattle

How far do you have to travel for visits to the Rhuemy Doctor: Boise to

Seattle

How far do you travel to see the P T or O T: NA

How often are each trip: Every 3 to 4 months, sees a Rheumatologist in

Boise in between.

Do you get questioned from school personnel due to school absents: no

Do you have a good school staff that understand: Did in elementary,

only nurse knows in Jr. High.

Do you have a school nurse at your childs school: yes

Do you feel the school is helping you and your child: no, we have not asked

Does your child ride a school bus or do you take the child to school: take to

school.

How often is the child out of school for Doctor visits:average 2 or 3

hours/mo

How often is the child out of school due to illness: never JRA, 3 days/year

sick

(Explain cold Or JRA ETC... )

How often is child out of school total in a school year: 6

Does your child participate in P E: yes

>>

[Guest guest]

In a message dated 9/8/00 7:06:10 AM Pacific Daylight Time, Robbin40@...

writes:

<<

Name:ne

City & State:Riverside, CA

Age: 13

Illness: Poly JRA

When Did It Start: 1996

Were There Any Symtoms Prior To Onset: Flu type symptoms

Medication On Now: Methotrexate, Folic Acid, Tolectin

What side effects does the child have on medication: Really none

What color hair does child have: Blond

What color eyes: Hazel

Child Up To Date On Immunizations: Yes

Has the child had any childhood diseases: Chicken Pox

(Which)

Is your child allergic to any immunization shot:No

Is your child allergic to anything:No

Has child been exposed to anything or has had:

Flu: Yes

Chicken Pox: Yes

Menigitis: No

Add any to this:

Child full term or premature: Full Term

Weight of child at birth: 7lbs. 3 oz

Height of child at birth: 20 in

Any complications during birth: Experienced severe morning sickness

What was the stay of the child at the hospital at birth: 2 days

What hospital was child born:Kaiser, CA

What percentile is the child in height and weight: below 50

What age did the child crawl: 6 months

What age did the child walk: 12 months

What age did the child start talking: 10 months

Did you drink during pregnacy: no

Did you smoke during pregnancy: no

Did you take anything to get pregnant: no

Did you use birth control: no

(if so what kind)

Was this a happy pregnancy: yes

Which line is this child first born 2 3 4th Last: First

Does the child have any more health problems other than JRA? no

( if so please list)

How is the child doing now:

walking: good

Talking: excellent

Motor skills: excellent

Hand eye cooranation: excellent

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts,

Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis: Grandmother

Asthma: Grandmother

JRA: Paternal cousin

Diabetes: Grandmother

Gout:

TB:

Shingles:

Stomach Problems:

ADHD:

Osteroarthritis:

Eye Problems:

Metobolic Problems:

Sickle Cell:

Thrombosis:

Heart Trouble: Grandmother

Emphysema: Grandmother

Lung Problems

Kidney Trouble:

Add any if it aint listed:

Has the child had any broken bones: no

Has the child had any sprains: no

Has the child had any hard bruises: no

Was the child breast fed: yes, 6 months

Was the child bottle fed: 6 months

If bottle fed what was the formula: Enfamil

What age did the child start eating baby food: 4 months

What kind of food did they eat: All baby foods

Has the child had ear infections: yes

How often: Severe when young, constantly

Has the child had urinary tract infections: no

How many:

Has the child had the croup:

Has the child had any other infections:

if so what was the antibotic

Can you list all medications the child took before onset of symtoms to JRA:

( if you use a pharmacy they may keep a list)

Antibiotics

How often was the child seen in a E R before onset of JRA: none

What was diagnosis:

How often was the child seen in the doctors office before onset of JRA:

Usually just for ear infections

Was or is the child at any day care centers: no

Is the childs enviroment Big City, Small Town, Rural, or Country:

(suburb) Big City

Does the child live near any Factorys, Plants, Airports: Yes

If so how close: Air Force base 5 miles

Does the child drink City water, Well Water or Bottled water:

( or has in the past) Bottled

Does the child eat any packaged meats: ocassionaly

( frozen at the store already if so which brand)

Does the child eat canned veggies: yes, all brands

if so what brands)

Does the child eat more fried foods: ocassionally

Does the child eat more boiled or broiled foods: occasionally

What other foods does the child eat: all typical teenage foods

(What brand)

Does the child live in Air Condition: yes,

Does the Child have Carpet or Hard wood flooring: caroet and hardwood

Electric or Gas stove: gas

Does the child eat foods Microwaved: ocassionally

Now This Is For ALL

What cleaning products do you use in the house:lysol windex

Have you cleaned your carpets or do you have a company do it:self

Has the child been exposed to LEAD or paints with lead in it: no

Has the child been Exposed to Abestos: no

Does the child take or has taken vitamins: yes, Flinstones

(If so what brand)

How often does the child eat junk foods: not too often

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in: Ajax, or Arm and Hammer

(Brand)

What kinds of chemicals are around the house: bug spray outside

When you took the child to the doctor for this problem what was the doctors

reaction: Pediatrition wasn't sure. I suggested arthritis

Was the child promptly examined:yes

What did the Doctor say it was the first time: he didn't know

What were the first blood tests given to check: R.Factor, ANA, Sed Rate

What is the childs tests now: monthly blood tests, not sure what it all is

What was the childs tests at onset:

You can give the tests done and the number here onset and now: All I am sure

of is that she is ANA positive

How long are the flare ups: usually a couple of days, to weeks

Does weather play a role with flare ups: not really

How long are the remissions: she had a remission for 6 months

Do you use self remedys: only heating pads

Has your child used or useing a wheelchair: only if at an amusement park

Has your child used braces or useing them now:no

What other assistants does your child use: none

What is the pain rate for your child most days: 8-9

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss: usually pretty good

Is there a time of day thats worse for your child: evenings always end in

pain

Does it seem like your child gets sicker more than other kids: yes,

How long did it take to get a diagnosis: not long, because I diagnosed it,

and suggested that it might be arthritis

Does the Doctor seem compassionate with your concerns: my Rheumy does

Does your child see a physical therapist: not at this point, but she has

(if so how long seeing the P T)

Does your child see a Occupational Therapist: she has in the past

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child: yes, very

happy with the treatment

How far do you have to travel for visits to the Rhuemy Doctor: 20 miles

How far do you travel to see the P T or O T:

How often are each trip: once a month

Do you get questioned from school personel due to school absents: no

Do you have a good school staff that understand: no

Do you have a school nurse at your childs school: no, it's a private school

Do you feel the school is helping you and your child: they haven't had to do

much

Does your child ride a school bus or do you take the child to school: I

drive her

How often is the child out of school for Doctor visits:average once a month

How often is the child out of school due to illness: maybe 2X a month

(Explain cold Or JRA ETC... ) usually because of colds

How often is child out of school total in a school year: maybe 14 days at

most

Does your child participate in P E: yes

If i have forgot anything that you want to add please add it here

feel free to:

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

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Subject: # 1 Survey 8-2000-(Please fill out if you havent done so yet)

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>>

Name:

City & State:

Age:

Illness:

When Did It Start:

Were There Any Symtoms Prior To Onset:

Medication On Now:

What side effects does the child have on medication:

What color hair does child have:

What color eyes:

Child Up To Date On Immunizations:

Has the child had any childhood diseases:

(Which)

Is your child allergic to any immunization shot:

Is your child allergic to anything:

Has child been exposed to anything or has had:

Flu:

Chicken Pox:

Menigitis:

Add any to this:

Child full term or premature:

Weight of child at birth:

Height of child at birth:

Any complications during birth:

What was the stay of the child at the hospital at birth:

What hospital was child born:

What percentile is the child in height and weight:

What age did the child crawl:

What age did the child walk:

What age did the child start talking:

Did you drink during pregnacy:

Did you smoke during pregnancy:

Did you take anything to get pregnant:

Did you use birth control:

(if so what kind)

Was this a happy pregnancy:

Which line is this child first born 2 3 4th Last:

Does the child have any more health problems other than JRA?

( if so please list)

How is the child doing now:

walking:

Talking:

Motor skills:

Hand eye cooranation:

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts, Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis:

Asthma:

JRA:

Diabetes:

Gout:

TB:

Shingles:

Stomach Problems:

ADHD:

Osteroarthritis:

Eye Problems:

Metobolic Problems:

Sickle Cell:

Thrombosis:

Heart Trouble:

Emphysema:

Lung Problems

Kidney Trouble:

Add any if it aint listed:

Has the child had any broken bones:

Has the child had any sprains:

Has the child had any hard bruises:

Was the child breast fed:

Was the child bottle fed:

If bottle fed what was the formula:

What age did the child start eating baby food:

What kind of food did they eat:

Has the child had ear infections:

How often:

Has the child had urinary tract infections:

How many:

Has the child had the croup:

Has the child had any other infections:

if so what was the antibotic

Can you list all medications the child took before onset of symtoms to JRA:

( if you use a pharmacy they may keep a list)

How often was the child seen in a E R before onset of JRA:

What was diagnosis:

How often was the child seen in the doctors office before onset of JRA:

Was or is the child at any day care centers:

Is the childs enviroment Big City, Small Town, Rural, or Country:

(suburb)

Does the child live near any Factorys, Plants, Airports:

If so how close:

Does the child drink City water, Well Water or Bottled water:

( or has in the past)

Does the child eat any packaged meats:

( frozen at the store already if so which brand)

Does the child eat canned veggies:

if so what brands)

Does the child eat more fried foods:

Does the child eat more boiled or broiled foods:

What other foods does the child eat:

(What brand)

Does the child live in Air Condition:

Does the Child have Carpet or Hard wood flooring:

Electric or Gas stove:

Does the child eat foods Microwaved:

Now This Is For ALL

What cleaning products do you use in the house:lysol windex

Have you cleaned your carpets or do you have a company do it:self

Has the child been exposed to LEAD or paints with lead in it:

Has the child been Exposed to Abestos:

Does the child take or has taken vitamins:

(If so what brand)

How often does the child eat junk foods:

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in:

(Brand)

What kinds of chemicals are around the house:

When you took the child to the doctor for this problem what was the doctors

reaction:

Was the child promptly examined:

What did the Doctor say it was the first time:

What were the first blood tests given to check:

What is the childs tests now:

What was the childs tests at onset:

You can give the tests done and the number here onset and now:

How long are the flare ups:

Does weather play a role with flare ups:

How long are the remissions:

Do you use self remedys:

Has your child used or useing a wheelchair:

Has your child used braces or useing them now:

What other assistants does your child use:

What is the pain rate for your child most days:

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss:

Is there a time of day thats worse for your child:

Does it seem like your child gets sicker more than other kids:

How long did it take to get a diagnosis:

Does the Doctor seem compassionate with your concerns:

Does your child see a physical therapist:

(if so how long seeing the P T)

Does your child see a Occupational Therapist:

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child:

How far do you have to travel for visits to the Rhuemy Doctor:

How far do you travel to see the P T or O T:

How often are each trip:

Do you get questioned from school personel due to school absents:

Do you have a good school staff that understand:

Do you have a school nurse at your childs school:

Do you feel the school is helping you and your child:

Does your child ride a school bus or do you take the child to school:

How often is the child out of school for Doctor visits:average

How often is the child out of school due to illness:

(Explain cold Or JRA ETC... )

How often is child out of school total in a school year:

Does your child participate in P E:

If i have forgot anything that you want to add please add it here

feel free to:

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

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Subject: # 1 Survey 8-2000-(Please fill out if you havent done so yet)

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[Guest guest]

Name: Ywellen (Zhondrese's mom)

City & State: Moss Point

Age: 10

Illness: poly. jra, asthma,tourette's syndrome,adhd,excema,asthma,anemia

When Did It Start:born w/asthma /excema,dxed adhd/tourette's at 2,jra at

9yrs.

Were There Any Symtoms Prior To Onset: yes hands/feet kept swelling and she

was limping

Medication On Now: singulair,mtx,folic acid,ritlan,calcium,vit.c,mutli

vita.,iron,aerobid,albuterol as needed,atarax,vioxx,tylenol3,motrin,zytrec

What side effects does the child have on medication:sometimes she doesn't

sleep for 2/3 days at a time. so guess who else doesn't sleep because she's

buggs the stew out of me

What color hair does child have:sandy brown

What color eyes:brown

Child Up To Date On Immunizations:yes

Has the child had any childhood diseases:yes

(Which) chicken pox

Is your child allergic to any immunization shot:no

Is your child allergic to anything:yes

Has child been exposed to anything or has had:

Flu: yes

Chicken Pox: yes

Menigitis:no

Add any to this:bronchitis,high fevers that dr couldn't explain

pneumonia several times, and pin worms she got from daycare when she was

little

Child full term or premature:2 weeks over due

Weight of child at birth: 7lbs 3/4oz.

Height of child at birth:21 in.

Any complications during birth:yes right shoulder was broken during delivery

and was born with extra finger, vessels popped in her eyes

What was the stay of the child at the hospital at birth:3 days

What hospital was child born:Memorial at Gulf Port Ms

What percentile is the child in height and weight:50/50 average for her age

4'9/100lbs

What age did the child crawl: 5 months

What age did the child walk: 9 months

What age did the child start talking:10 months

Did you drink during pregnacy:no don't drink

Did you smoke during pregnancy:no

Did you take anything to get pregnant:no

Did you use birth control:yes

(if so what kind) loestin

Was this a happy pregnancy: no depressed

Which line is this child first born 2 3 4th Last: first and last only

child. she stayed too sick for me to have another child

Does the child have any more health problems other than JRA? yes

( if so please list) tourette's syndrome, adhd, asthma, excema of skin and

scalp too

How is the child doing now: fine

walking: limping but walking

Talking:excellent

Motor skills:good

Hand eye cooranation: wear glasses and when hads not swollen they're fine too

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts, Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis: none

Asthma:her, aunt,uncle,cousin

JRA: just my daughter

Diabetes:maternal grandmother/aunt/uncle

Gout:no

TB:no

Shingles:no

Stomach Problems:no

ADHD:my daughter,cousins

Osteroarthritis:no

Eye Problems:her,cousins,mat./pat.grandmothers

Metobolic Problems:no

Sickle Cell:we carry the trait,cousins have the disease

Thrombosis:no

Heart Trouble: maternal granmother

Emphysema:no

Lung Problems:no

Kidney Trouble: maternal great aunt/uncle

Add any if it aint listed:

tourette's syndrome:pateral grandmother,cousin

high blood pressure: mother,maternal grandmother

scelorosis: maternal aunt,cousins

Has the child had any broken bones:no

Has the child had any sprains:drs thought she did, but it was jra

Has the child had any hard bruises:no

Was the child breast fed:yes

Was the child bottle fed:yes

If bottle fed what was the formula:breast milk

What age did the child start eating baby food: fed baby cereal at 2weeks,baby

foods/juices at 4months

What kind of food did they eat:heinz/gerbers

Has the child had ear infections:yes

How often:many times. ended up having tubes put in her ears when she was 4yrs.

Has the child had urinary tract infections:no

How many:

Has the child had the croup: yes

Has the child had any other infections: yes

if so what was the antibotic :kelflex,duracef,ceftin

Can you list all medications the child took before onset of symtoms to JRA:

( if you use a pharmacy they may keep a list)

slobid,augmentin,amoxicillin,aerobid,albuterol,intel,valiums,pancof,triaminic,

robtuss,atarax, zytrec,wellbutrin,

adderall,maalox,mylanta,biaxin,benadryl,zoloft,clinodine,used nizoral cream/

shampoo for excema, there's a whole lots of other meds, but too many to type

and if you name it she's probably taken it including sleeping pills

prescribed from dr.

How often was the child seen in a E R before onset of JRA:too many time to

even count

What was diagnosis: everything but jra

How often was the child seen in the doctors office before onset of JRA:too

many times to even count, but when I switched to the dr she now sees she dxed

it right off the back. the very first vist she looked at her hands and told

me she had jra and I laughed at her because I thought this was something old

people got.

Was or is the child at any day care centers:yes when she was little and now

after school care, but she was also home schooled too.

Is the childs enviroment Big City, Small Town, Rural, or Country: small town

(suburb)

Does the child live near any Factorys, Plants, Airports: plants/airport

If so how close:plants not quite 1/2 mile, airport 1/2 mile

Does the child drink City water, Well Water or Bottled water: bottled

( or has in the past)she always drunk bottled water from day one

Does the child eat any packaged meats:yes

( frozen at the store already if so which brand) all brands except libby's

Does the child eat canned veggies: yes

if so what brands) all brands except libby's

Does the child eat more fried foods:not really

Does the child eat more boiled or broiled foods: yes

What other foods does the child eat:basically veggie eater

(What brand)all except libby's

Does the child live in Air Condition:yes only way to live :-)

Does the Child have Carpet or Hard wood flooring:carpet and tile

Electric or Gas stove:eletric

Does the child eat foods Microwaved:no, but will heat food in the microwave

Now This Is For ALL

What cleaning products do you use in the house:lysol,

windex,pinsol,clorox,mop/glow,ajax,comet,dawn for dishes ,amonia,tilex,

Have you cleaned your carpets or do you have a company do it:both

Has the child been exposed to LEAD or paints with lead in it:no

Has the child been Exposed to Abestosno:

Does the child take or has taken vitamins:yes

(If so what brand) whatever is on sale when I got buy them

How often does the child eat junk foods: not often buy lots of fruits and

healthy snacks

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in: Gain and bounce in dryer

(Brand)

What kinds of chemicals are around the house: no

When you took the child to the doctor for this problem what was the doctors

reaction:they dr thought she was being abused because of the swelling in her

hands and feet and she was limping. also thought I just wanted her to be

sick. just think i was with this dr for 9yrs. so i switched and dr. gina knew

just talking to me before looking at her hands.

Was the child promptly examined:very promptly

What did the Doctor say it was the first time:the new dr said jra off the back

What were the first blood tests given to check:ana, cbc, rheumatoid factor,

anemia

What is the childs tests now: same as above and liver test,mtx level and

can't remember other test

What was the childs tests at onset:postive for jra,anemia,low blood count

You can give the tests done and the number here onset and now:same test not

sure of number

How long are the flare ups:weeks at a time

Does weather play a role with flare ups:a little

How long are the remissions:thought we were getting there then bam

Do you use self remedys:yes, heating pads, warm baths,tylenol arthritis over

the counter,alcohol rubs,natural herbs

Has your child used or useing a wheelchair: no, only at amusement parks

Has your child used braces or useing them now:no

What other assistants does your child use: splint for her hands

What is the pain rate for your child most days:6-6 1/2

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss:very stiff help her out of

bed

Is there a time of day thats worse for your child:mornings

Does it seem like your child gets sicker more than other kids:but of course

she does

How long did it take to get a diagnosis:9 yrs

Does the Doctor seem compassionate with your concerns:very concerned actually

she seem more concernd that i do at times.

Does your child see a physical therapist:yes

(if so how long seeing the P T) just started

Does your child see a Occupational Therapist:yes

(if so how long seeing O T)4 months and then we were released becaause she

took swimming lesson the whole summer.

Do you feel you are getting the best treatment for your child:yes

How far do you have to travel for visits to the Rhuemy Doctor: 1 1/2 hours

every 3/4 month

How far do you travel to see the P T or O T: 5 minutes

How often are each trip: every tue/thurs

Do you get questioned from school personel due to school absents:no

Do you have a good school staff that understand: some do and some don;t want

to, but me being the mom i am they will understand or find a new job. I have

one teacher that's giving my baby a hard time so i think she wants a new job

or something, because the way she treats her due to the jra affecting her

hands. most of the time they're swollen during the day and she can't write

and they're to assist her .

Do you have a school nurse at your childs school:yes a full time nurse

Do you feel the school is helping you and your child:not like they're suppose

to, but they're getting their because they don't want new jobs :-)

Does your child ride a school bus or do you take the child to school:both and

a daycare van in the evenings

How often is the child out of school for Doctor visits:not often because we

schedule appts. for afterschool, but I miss alot of work taking her which is

fine since we're a family owned daycare.

How often is the child out of school due to illness:often

(Explain cold Or JRA ETC... ) both and meds make her sleepy so school calls

me to come get her because she can't stay up or they can't wake her up.

How often is child out of school total in a school year:average

Does your child participate in P E:yes,but limited

Does your child ride bike or roller blades: both but be in lots of pain when

finished. her feet and ankles are affected also.

Does child sleep all night: no and never have

Is there a IEP/504 Plan set up in school for child:yes both of them

Does the child let theJRA stop him/her from doing anything: no

How often does the child over do it: very often don't wanna be different from

other kids.

Have child had any surgeries before JRAdxed: yes hernia remove, tubes in

earand adnoids removed

How are the parents coping with chil with JRA: I'm doing fine now,but was in

denial for awhile. When I heard elderly people talk about rheumatoid I

thought they were just saying something for attention until it hit home. I

now know better

If i have forgot anything that you want to add please add it here

feel free to:

I think I added enough for now. Sorry it took so long to do the survey but I

thought it was too long and not important enough to answer until you sent it

again and I started reading what others had to say about there kids. Actually

I'm just coming out of denial about my daughter having this horrible disease

called JRA.Now I', ready for the next survey.

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Zhondrese,

Thank you for filling out the survey. Your information is

important to us. Hoping somewhere we can find something in common to explain

the JRA.

I went through the grieving process to before I accepted the

fact that my daughter has JRA. It's hard to face the fact that our child has

an illness. I think pur acceptance of the disorder will help them deal with

it too. This group has been a godsend!!!

Teri

[Guest guest]

Teri,

Zhondrese is my daughter's name. My name is Ywellen. I agree that this

group is a God sent group, because I have learned more from here than any dr.

could ever tell me. It's been a very hard tiime for me because she's my only

birth child, but I'm raising two nephew too. They have been very

understanding and helpful with her even though on her good days she doggs

them out. She's the oldest of the three and their mom :-). They mind her

better than me and I don't understand that. Today is a bad day for her and

they're taking care of her like she's a infant. Her hands and feet are

swollen and she can barely walk so they're doing everything for her, except

taking her to the bathroom they say that's my job and I'm big enough to

handle her. They will try to pick her up but she weights 100 lbs and they

don't want to drop her,but they do assits me in taking her to the

bathroom(holding her legs/feet). Sweet huh?

Ywellen

[Guest guest]

In a message dated 9/8/00 7:06:29 AM Pacific Daylight Time, Robbin40@...

writes:

<< Name: Tally

City & State: Clemson, SC

Age: 5

Illness: Still's

When Did It Start: December 1999

Were There Any Symtoms Prior To Onset: non-specific Upper respiratory

symptoms

Medication On Now: Methotrexate, aleve, tapering prednisone and enbrel

What side effects does the child have on medication: Few if any. He's

still growing, he's a little hairier but not bad, hasn't gained weight.

Eats well. Sleep isn't like it once was but it's improving. Gets more

exhausted but that can be attributed to not just his body growing but also

his body fighting to get better.

What color hair does child have:

What color eyes:

Child Up To Date On Immunizations: yes

Has the child had any childhood diseases: yes, Chicken pox shortly after

immunization... followed by flu vaccination.

(Which)

Is your child allergic to any immunization shot:

Is your child allergic to anything: milk products.

Has child been exposed to anything or has had:

Flu:

Chicken Pox:

Menigitis:

Add any to this:

Child full term or premature: full

Weight of child at birth 9 pounds 9 ounces:

Height of child at birth: 22 inches

Any complications during birth: none

What was the stay of the child at the hospital at birth: two days

What hospital was child born: naval hospital

What percentile is the child in height and weight:

What age did the child crawl: 7 months

What age did the child walk: a year.

What age did the child start talking: two years

Did you drink during pregnacy: no

Did you smoke during pregnancy: no

Did you take anything to get pregnant: no

Did you use birth control: yes

(if so what kind) depro prevara

Was this a happy pregnancy: yes

Which line is this child first born 2 3 4th Last: first

Does the child have any more health problems other than JRA? nope

( if so please list)

How is the child doing now:

walking: average

Talking: above

Motor skills: has problems with pronounciation

Hand eye cooranation: great...loves video games

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts,

Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis: yes

Asthma:

JRA:

Diabetes: yes

Gout:

TB:

Shingles:

Stomach Problems:

ADHD:

Osteroarthritis:

Eye Problems:

Metobolic Problems:

Sickle Cell:

Thrombosis:

Heart Trouble:

Emphysema:

Lung Problems

Kidney Trouble:

Add any if it aint listed:

Has the child had any broken bones: no

Has the child had any sprains: no

Has the child had any hard bruises no:

Was the child breast fed: yes...two years

Was the child bottle fed: never

If bottle fed what was the formula: na

What age did the child start eating baby food: 6 months when he cut first

tooth

What kind of food did they eat: rice cereal

Has the child had ear infections: never had one

How often: never

Has the child had urinary tract infections: never

How many: none

Has the child had the croup: none

Has the child had any other infections: flu in winter.

if so what was the antibotic no antibiotics for viral infections.

Can you list all medications the child took before onset of symtoms to JRA:

( if you use a pharmacy they may keep a list) none

How often was the child seen in a E R before onset of JRA: none

What was diagnosis:

How often was the child seen in the doctors office before onset of JRA:

none, went straight to children's hospital for admittance

Was or is the child at any day care centers: no

Is the childs enviroment Big City, Small Town, Rural, or Country:

(suburb) small town

Does the child live near any Factorys, Plants, Airports:

If so how close: plants and factory... in fact, i thought there was a

connection between tally and my part time job. We've had two deaths, two

women with aneurysms, every child born of women my age has had or has now

problems. One died shortly after birth. Another man has crohns disease

recently diagnosed.

Does the child drink City water, Well Water or Bottled water: bottled

water or filtered

( or has in the past)

Does the child eat any packaged meats: No meat.

( frozen at the store already if so which brand)

Does the child eat canned veggies: not often...fresh normally

if so what brands)

Does the child eat more fried foods: yes, french fries

Does the child eat more boiled or broiled foods: just boiled

What other foods does the child eat: try to stick with kosher foods...

normally bake my own break with a break machine.

(What brand)

Does the child live in Air Condition: yes, air conditioners are cleaned in

spring to prevent bacterial growth. Onset was in winter not summer

Does the Child have Carpet or Hard wood flooring: linoleum

Electric or Gas stove: electric

Does the child eat foods Microwaved: no microwave

Now This Is For ALL

What cleaning products do you use in the house:lysol windex

Have you cleaned your carpets or do you have a company do it:self

Has the child been exposed to LEAD or paints with lead in it: yes, but his

blood is fine.

Has the child been Exposed to Abestos:

Does the child take or has taken vitamins: (If so what brand) yes,

flintstones

How often does the child eat junk foods: very seldom... pringles or ice

pops

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in: tide

(Brand)

What kinds of chemicals are around the house: i burn candles

When you took the child to the doctor for this problem what was the doctors

reaction: Doctor was concerned and was sent directly for blood work then to

the children's hospital 4 hours away.

Was the child promptly examined: Yes, walked in and within 5 minutes we

were out the door.

What did the Doctor say it was the first time: arthritis and crippling.

What were the first blood tests given to check: Pediatrician ordered Sed,

general, RF test so the results would be ready at the admitting hospital

What is the childs tests now: Sed rate went down from 145 to 60 ish.

What was the childs tests at onset:

You can give the tests done and the number here onset and now:

How long are the flare ups: depends on how I treat them... do nothing and

they drag on but if I start forcing water, and activity, and restrict his

foods, overnight

Does weather play a role with flare ups: yes.

How long are the remissions: no remissions, just levels of play. He's on

too much medicine to consider it remission.

Do you use self remedys: yes, EFA's, perna, msm, glucosamine, no milk

products now, rest, lots of fresh air even if I have to wheel him around.

Has your child used or useing a wheelchair: yes, when he's sore and he

has to go to school. You don't feel better laying on a couch so he goes to

school unless he's running a fever.

Has your child used braces or useing them now: No

What other assistants does your child use: me

What is the pain rate for your child most days: most days he's not sore or

if he is, just a little, so normally 3 but on flares, he is extremely sore

so a 10.

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss: depends... a little

Is there a time of day thats worse for your child: mornings.

Does it seem like your child gets sicker more than other kids: He has

never really been sick a day in his life until december... now he appears to

be over the worse of the illness so hopefully he will continue to mend.

How long did it take to get a diagnosis: 2 weeks from onset.

Does the Doctor seem compassionate with your concerns: Doctors have been

phenomenal. Very concerned and have gone out of their way to help and to

assist.

Does your child see a physical therapist: yes, once a week for a half hour.

Was twice a week but his range of motion has improved enought to only need

it once a week.

(if so how long seeing the P T) january

Does your child see a Occupational Therapist: no

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child: Yes, my

RD's and pediatrician, his ortho doc and opthamologist have been very

supportive. The pediatrician and RD have been the ones to make the

difference in the course of his treatment. Early diagnosis is the key.

How far do you have to travel for visits to the Rhuemy Doctor: 4 hours

How far do you travel to see the P T or O T: 2 miles

How often are each trip: once a month

Do you get questioned from school personel due to school absents: No, they

have been supportive and know that I have made an effort to get him there.

They see how he arrives to school in the am barely able to walk some days.

They know that Tally makes a huge effort so they make a huge effort to make

his day go smoothly. They help him inside the building and check his

temperature if he looks flushed. They wheel him around in the wheelchair if

he needs extra attention.

Do you have a good school staff that understand: wonderful

Do you have a school nurse at your childs school: nurse has dealt with

arthritis since she was a young girl so she understands.

Do you feel the school is helping you and your child: yes..they have been

great.

Does your child ride a school bus or do you take the child to school:

How often is the child out of school for Doctor visits:average so far

it's been 6 days since the beginning of the school year. They are trying to

insure that he doesn't have complications. Doctors are making a huge effort

to insure that he grows up without crippling or damage. Very conscientious.

How often is the child out of school due to illness:

(Explain cold Or JRA ETC... ) so far, only once did they send him home

with an elevated fever of more than 101.0.

How often is child out of school total in a school year: none

Does your child participate in P E: yes, loves soccer and tennis...loves

to run and swim. I run so he knows activity is important so he models me.

>>

[Guest guest]

Name: Holly

City & State: Chicopee, MA

Age: 6

Illness: Systemic JRA

When Did It Start: 9/94 at 9 months of age

Were There Any Symtoms Prior To Onset: fever, very intermittent but there

Medication On Now: mtx, motrin

What side effects does the child have on medication: mostly stomach pain

What color hair does child have:blonde

What color eyes:blue

Child Up To Date On Immunizations: no has not had varivax or mmr

Has the child had any childhood diseases: no

(Which)

Is your child allergic to any immunization shot: no

Is your child allergic to anything: yes bactrim

Has child been exposed to anything or has had:

Flu: yes

Chicken Pox: no

Menigitis:no

Add any to this: she had a uti just before onset. Also someone i know is

convinced that holly has jra due to chemical poisoning from me working at a

flooring store during pregnancy

Child full term or premature: yes

Weight of child at birth: 7lbs 9 ounces

Height of child at birth: 20 1/2

Any complications during birth: she didnt want to breath real well, but was

okay in minutes. Also i had an epidural and could still feel pain so they

said to roll onto my side as the medication works on gravity, but as sooon as

i was on my side they couldnt find her heartbeat, so they said lets get this

kid out now, cranked the ptocin and out she came, in minutes, scary

What was the stay of the child at the hospital at birth: 1 day

What hospital was child born: baystate medical center

What percentile is the child in height and weight: 50%

What age did the child crawl: 12-15 months

What age did the child walk: 12-15 months

What age did the child start talking: birth

Did you drink during pregnancy: no

Did you smoke during pregnancy:no

Did you take anything to get pregnant:no

Did you use birth control:no

(if so what kind)

Was this a happy pregnancy: yes

Which line is this child first born 2 3 4th Last: 2nd

Does the child have any more health problems other than JRA? no

( if so please list)

How is the child doing now: pretty much ontarget with all milestones,

sometimes painful but she can do them all.

walking:

Talking:

Motor skills:

Hand eye cooranation:

Family History

Does Grandfather, Grandmother, Father, Mother, Brother, Sister, Aunts, Uncles

or Cousins have or had any or the following ( put the person who has it next

to it)

Arthritis: great grandmother, grandmother

Asthma: mother,sister,brother,cousins,

JRA:

Diabetes:

Gout:

TB:

Shingles:

Stomach Problems:

ADHD: cousin, brother ,sister

Osteroarthritis:

Eye Problems: glasses, mostly all relatives except siblings

Metobolic Problems:

Sickle Cell:

Thrombosis:

Heart Trouble:

Emphysema:

Lung Problems

Kidney Trouble:

Add any if it aint listed:

Has the child had any broken bones:no

Has the child had any sprains:no

Has the child had any hard bruises:no

Was the child breast fed:yes

Was the child bottle fed:no

If bottle fed what was the formula:

What age did the child start eating baby food: 8 months

What kind of food did they eat: baby stuff, rice cereal and bananas mostly

and always a clear favorite

Has the child had ear infections: yes

How often: not many

Has the child had urinary tract infections: yes

How many: 1

Has the child had the croup: yes, brother also gets croup atleast once a year

Has the child had any other infections: mycoplasma, sinusitis (chronic)

if so what was the antibotic zithromax, biaxin, so many i cant even name them

all

Can you list all medications the child took before onset of symptoms to JRA:

( if you use a pharmacy they may keep a list)

How often was the child seen in a E R before onset of JRA: never

What was diagnosis:

How often was the child seen in the doctors office before onset of JRA:

daily or even twice daily for like 5 weeks

Was or is the child at any day care centers:no

Is the childs environment Big City, Small Town, Rural, or Country: was

rural, now big city

(suburb)

Does the child live near any Factorys, Plants, Airports: she does now, but

not at onset

If so how close:

Does the child drink City water, Well Water or Bottled water: city now, well

and bottled too

( or has in the past)

Does the child eat any packaged meats: yes, i dunno ( she is not a big meat

eater and neither am i, lol)

( frozen at the store already if so which brand)

Does the child eat canned veggies: um not usually

if so what brands)

Does the child eat more fried foods: yeah i guess

Does the child eat more boiled or broiled foods:

What other foods does the child eat:

(What brand)

Does the child live in Air Condition: yes

Does the Child have Carpet or Hard wood flooring: carpet

Electric or Gas stove: electric

Does the child eat foods Microwaved: yes

Now This Is For ALL

What cleaning products do you use in the house:lysol windex

Have you cleaned your carpets or do you have a company do it:self

yes to all that, we use many brands of cleaners what ever happens to be on

sale

Has the child been exposed to LEAD or paints with lead in it: not to my

knowledge

Has the child been Exposed to Abestos: not to my knowledge

Does the child take or has taken vitamins: not really, iron yes though

(If so what brand)

How often does the child eat junk foods: she eats an average amount of junk,

but keep in mind with all these food questions she was still only breastfed

when diagnosed, but i guess we pretty much have the same basic type of diet

( Sweets, Potatoe Chips, ETC...)

What do you wash the clothes in: any

(Brand)

What kinds of chemicals are around the house:

When you took the child to the doctor for this problem what was the doctors

reaction: calm

Was the child promptly examined: yes

What did the Doctor say it was the first time: allergic reation to bactrim,

her first symtoms were fever and rash

What were the first blood tests given to check:

What is the childs tests now:

What was the childs tests at onset:

You can give the tests done and the number here onset and now:

How long are the flare ups:

Does weather play a role with flare ups:

How long are the remissions:

Do you use self remedys: no

Has your child used or useing a wheelchair: not really

Has your child used braces or useing them now: splints on wrists

What other assistants does your child use:

What is the pain rate for your child most days: varies

( 1 - 10 10 being worse)

How is your child in the mornings with stiffenss:

Is there a time of day thats worse for your child:

Does it seem like your child gets sicker more than other kids: yes

How long did it take to get a diagnosis: 6 weeks

Does the Doctor seem compassionate with your concerns: for the most part yes

Does your child see a physical therapist: she has but nnot right now

(if so how long seeing the P T)

Does your child see a Occupational Therapist: yes but not right now

(if so how long seeing O T)

Do you feel you are getting the best treatment for your child: yes

How far do you have to travel for visits to the Rhuemy Doctor: 20 min

How far do you travel to see the P T or O T: same

How often are each trip: rheumy is every 2 months right now

Do you get questioned from school personel due to school absents: no

Do you have a good school staff that understand: mostly

Do you have a school nurse at your childs school: half day

Do you feel the school is helping you and your child: for the most part,

although the school is not completely accessible but right now that is not an

issue

Does your child ride a school bus or do you take the child to school: i bring

her but she comes home on the bus

How often is the child out of school for Doctor visits:average

How often is the child out of school due to illness:

(Explain cold Or JRA ETC... )

How often is child out of school total in a school year: last year was around

30 days

Does your child participate in P E: yes

If i have forgot anything that you want to add please add it here

feel free to: