Question to Group

[Guest guest]

Hi Lora,

My , age 10, also systemic, had similar bruises. At the time

he was on Naprosyn. Although usually the " initial " drug of choice he

did not respond well to naprosyn. He had significant bruising,

extreme behavior changes, and tummy/gastric problems. He had a

colonoscopy done because of weight loss and bleeding in his stools

and at the time it was attributed to the naprosyn. However, in all

fairness to this drug, I wonder if the " tummy " trouble was actually

the beginning of his colitis/chrone's dz. The gastric dr. is going

to do another colonoscopy (the 3rd) in a few weeks to determine

which. But, back to the naprosyn, also developed night

terrors while on this and the terrors were extreme. He does still

have them and takes clonazepam every night of his life in order to

sleep. Again, in fairness to naprosyn, it seems as though a majority

of jra kids have moderate to severe sleeping problems.

I would guess, and I'm not a medical professional, but I guess you

could say a professional mom of 2 kids with jra, I would guess your

rheumy is being cautious and making sure there aren't any bleeds

because of the meds. Our children's meds are so very, very strong.

When Olivia was diagnosed she was immediately put on Naprosyn and she

had bruising all over, look like I'd beat the youngun'. The

slightess amount of pressure and shortly a bruise would appear. My

rheumy, whom I'm very pleased and comfortable with, looked her over

and other than a few tummy aches she did okay with the nap. She

really didn't have any improvement on it though. But, given our

family history with medicines and reactions he took her off and put

her on plaquenil, vioxx and a number of other meds.

We went through the methotrexate course with and me (I was

diagnosed with dermatomyositis) and neither one of us could tolerate

that either. So he skipped it with Olivia.

This shows you that we are not the norm with medicines.

Lora, remember that jra presents itself in many different ways,

attacks each child with some similarities and lots of differences.

Each type is labeled, as is each drug. Each reaction is in itself

unique and you will find many similarities in other children. Some

children have reactions while others may have terrific respond to the

very some drug. I hope my experience with it has helped you. If you

are uncomfortable with your on this drug talk it over with

your rheumy. But by all means, if she is responding to it and it

works, and your dr. feels like the bruising is the only side effect,

don't let my experience scare you, it was a reaction that is not very

common. Sounds like your rheumy is concerned with her well being and

will help you make the decision that you are most comfortable with.

You know your child best------

Sharon

> This evening , my daughter , age 7, systemic, I noticed on

her

> left inside knee and upper leg, small numerous fingertip size

> bruises. When pressing them she says they do not hurt, she has not

> fallen. They are scary looking. I called rheumatologist, he wants

to

> see her in the am. this worried me even more. She is on Naprosyn,

and

> occasionally motrin although not recently on motrin. have any other

> parents seen this? and if so what did it turn out to be? Thank you,

> Lora

[Guest guest]

Lora,

My daughter was on naprosyn and had numerous bruises on her

legs. Her rheumy wasn't to concerned and said they would go away

after the med was discontinued. was weaned off the naprosyn and

is currently in remission. The bruises have gone. Your rheumy might

want to draw some blood just to check though.

Teri

[Guest guest]

Dear Lora,

When my Kate was on Naprosyn she too also bruised easily. The slightest

little bump and out popped a bruise! (It looked like she'd been beaten!)

She is very active and quite a tomboy so her legs were always covered.

Her dr. finally pulled her after she started to get scars on her face

(from rubbing her handsplints on her cheek while she slept) Naprosyn

does cause bruising and can make the skin fragile over time.

[Guest guest]

From what I understand JRA is an autoimmune disease and there are

many others out there--various types. Science currently does not

think JRA itself is passed down but the potential for JRA or other

autoimmune diseases is. So, no you did not pass it down directly. The

potential does not mean it will be passed down either, the conditions

have to be right (or actually it should be wrong) to turn on the

disease. Does that make sense?

I wish you and your daughter well. It is difficult enough to take

care of a child with a chronic illness without being ill yourself.

My daughters joints were improving for a couple weeks on the

Prednisone burst but now she is totally flaring again. It is such an

emnotional roller coaster! And then there is our 4 year old who we

are trying to get his behaviors under control with meds. Etc etc. So

many people carry such major challenges through out life and then

others chronically whine because they missed their nail appointment

or had to wait 2 minutes at Mcs or whatever. Sorry been a long

day!

--e, 14 y.o. daughter poly; 12 y.o. son " typical " , 4 y.o. with

way too many diagnoses and difficulties for anyone 10 times his age

[Guest guest]

Lora

i have been through what you are going through with the coumidian and heprin

my hubby has blood clots

right now hes doing ok with them and not on any medication

but is monitored and his protime the doctor has told him to eat fish and

foods high in vitamin K and take a asprin a day

you also need to pay attention from getting cut while on this medication

i aint sure if this would have caused this JRA with melissa but you have me

thinking now

Robbin

[Guest guest]

Hello Lora..i am sorry to hear what has happened to you. I don't have

anything relating to your question but i wanted to say hi and to let you

know i was wondering about you and . I can't believe that it is still

going on with her father. I hope you feel better and give a hug!

(((hugs))))

karen(tabitha 16..poly)

From: mentorvic@...

Reply-

Subject: question to group

Date: Thu, 1 Nov 2001 22:49:28 EST

Hi everybody, its been a long time since I have posted anything, I have been

in and out of court still with my daughter, ,'s father to no end.

is age 8, systemic. I also was in the hospital and this is where my

question comes in. I was hospitalized with symptoms mimicing multiple

sclerosis, I was the right age and from the right part of the country and

everything was pointing to this, I had paraysis in my arm, weakness on my

left side and so forth. After many tests they found out that I did not have

MS but I have what is called Antiphospho-lipid antibody syndrome, in other

words an auto immune disease that causes me to form blood clots very easily.

I am on coumadin 10 mgs per day and heparin injections daily to thin my

blood. My question is this, Are there other parents out there who have

autoimmune diseases as well, and did I pass my disease to her in the form of

systemic jra, have any of your children been tested for this condition, is

it

related to jra, wow that was a long question ! Hope to hear some feedback on

this soon !! Lora

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Oh wow Lora where do I start . well I do know that JRA has beeen found to be genetic you pass on a genetic predisposition for it. I and Donna in the group are part of the human Genome project that is being done for JRA by the government. So we know this to be true! But here are two other factors that wake the gene up so to speak and environmental factor and a viral factor. As for your condition well I also know that there is a whole group of diseases which fall under the heading of the Collagen diseases, If you by genetics are predisposed to the collagen diseases then there are about 350 different disease that could show up in your family. I know in my family I am ..so far thew only one with JRA, but my sister has Crohn's disease, my dad had Diabetes, One brother has Asthma, The other brother has RA or OA not sure he's too subborn to go have it actually diagnosed properly. So my advice to you is that you check out the collogen diseases and see if your new diagnosis falls under that umbrella, if so then U are just experiencing the same thing my family is ...I sorry to hear that you've been ill, but i hope that with a diagnosis now you can come to terms with it hun Oh and by the way I want to tell you that the use of heparin can cause leaching of the calcium which can lead to osteoporosis, a preventable form of arthritis . If your doc hasn't already warned you about this with using heparin then please make a point to ask him about it . Bless you Lora and :):)Tree:):) question to group Hi everybody, its been a long time since I have posted anything, I have been in and out of court still with my daughter, ,'s father to no end. is age 8, systemic. I also was in the hospital and this is where my question comes in. I was hospitalized with symptoms mimicing multiple sclerosis, I was the right age and from the right part of the country and everything was pointing to this, I had paraysis in my arm, weakness on my left side and so forth. After many tests they found out that I did not have MS but I have what is called Antiphospho-lipid antibody syndrome, in other words an auto immune disease that causes me to form blood clots very easily. I am on coumadin 10 mgs per day and heparin injections daily to thin my blood. My question is this, Are there other parents out there who have autoimmune diseases as well, and did I pass my disease to her in the form of systemic jra, have any of your children been tested for this condition, is it related to jra, wow that was a long question ! Hope to hear some feedback on this soon !! Lora For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Dear Lora , Tree again , I went to Web MD on line and found out that indeed Antiphospholipid antibody syndrone is a part of having Lupus for some people apparently, I don't know if that means it also falls under the arthritis umbrella as lupus does but it seems very closely related to me .... were you tested for lupus? I'll let you know if I find anything else! :):)Tree:):) question to group Hi everybody, its been a long time since I have posted anything, I have been in and out of court still with my daughter, ,'s father to no end. is age 8, systemic. I also was in the hospital and this is where my question comes in. I was hospitalized with symptoms mimicing multiple sclerosis, I was the right age and from the right part of the country and everything was pointing to this, I had paraysis in my arm, weakness on my left side and so forth. After many tests they found out that I did not have MS but I have what is called Antiphospho-lipid antibody syndrome, in other words an auto immune disease that causes me to form blood clots very easily. I am on coumadin 10 mgs per day and heparin injections daily to thin my blood. My question is this, Are there other parents out there who have autoimmune diseases as well, and did I pass my disease to her in the form of systemic jra, have any of your children been tested for this condition, is it related to jra, wow that was a long question ! Hope to hear some feedback on this soon !! Lora For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Tree

ok now you have me wondering that word Collegen is in melissas record

and the dr has mentioned it to me

can you enlighten me on this meaning

Robbin

[Guest guest]

hi all

just to let yall know when melissa got to asheville her knee started acting

up

from that she said her knees hurt the next day also then when she got home

she showed me 2 knots 1 on the upper part of her ankle and the other right

above her knee she says they dont hurt real bad but she does need soak in

the hot water more i called her dr and checked her labs from last week and

her sed rate was 6

the rest were in normal range

this bugs me because when she was in a full flare her sed rate was 3 i think

then when she was doing fair it was a 5 now its 6

Robbin

[Guest guest]

Robbin, JRA falls under the Umbrella of a group of diseases call the collagen diseases. The collagen diseases are a group of diseases that have in come the fact that they affect the connective tissues, skeletal framework(musculoskeleetal structures), and protective coverings such as the skin, mucous membranes and even vessel linings.Examples of these collagen diseases are JRA , RA, lupus, scleroderma, rheumatic fever, polymysitis, and the list goes on and on ... I don't know if your doctor was mentioning collagen diseases or just collagen which is the fibrous protein that exist in bone, tendon, cartilage, and other connective tissues... Hope this helps you out robbin :):)Tree:):) Re: question to group Treeok now you have me wondering that word Collegen is in melissas recordand the dr has mentioned it to mecan you enlighten me on this meaningRobbinFor links to websites about arthritis and JRA, visit:http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Tree

thanks for this info thats what i had thought about

Robbin

[Guest guest]

“Down in the dumps”

is an understatement, my daughter (13, systemic) goes thru all those same feelings. She hates

the disease, she hates how she looks from the side effects of the steroids…..it

goes on and on.

I think it’s a combination of the

meds & the disease itself. Life is changed as they knew it and it’s

difficult to adjust. ’s friends are different; her outlook on life and her future

has changed. Most in a positive way, so you just have to encourage them

and be as supportive as possible. AND, take time for yourself because you

have to stay strong for your daughter!!

Dayna

Drennan

QUESTION TO GROUP

First of all, I'd like to say " thanks " to Georgina

for an outstanding job she does with this site. It has been very helpful

in many ways!

I have an 8 yr. old (systemic) who recently has been displaying anger, sadness

and frustration. At first I thought nothing much about it, but now it's

getting pretty frequent and it breaks my heart to hear her say hurtful things

about herself.

I had a heart to heart talk with her a few days ago and from what she has told

me, the " root " of the problem is the disease. She now is

realizing that she is " different " and she told me she " hates her

disease " . I've always made it a policy to be as open as much as

possible with everything from the disease to the lab work (so she wouldn't have

any surprises).

My question is does any of your children go through the " down in the

dumps " phase and what do you do to help your child? Is there

any sites on the internet that I can read to help us through this before

it gets out of hand? I know the disease can be a monster and the medications

can have some ill effects too.

She tends to be in more pain than the usual and that's probably due to the cold

weather and she also tends to push herself " beyond " her limits

(she tires easily).

If anyone has any suggestions I'd love to hear them! Thanks.

Sincerely,

Your

use of is subject to the Terms of Service.

[Guest guest]

hi i am the mom of poly JRA with connective tissue disease

i can understand what your going through when was first diagnosed

with this i had to start sleeping with her so she could hold me there were

times i would cry on the inside because her words brave face mom lololol

what got me most was

when she asked me mom why does god make me hurt so bad why cant he help me

with this pain this tore me up knowing i really didnt have a good answer

i was honest with her and told her its not gods fault i dont know why you

got this

disease but we will overcome it i would lay there with her and listen to

her tell me how she felt we talked about angels different things that she

wondered about

i will advise you to let her be referred to a psychologist just to talk

with YOU in there they have good talk sessions with other kids her age

melissas doctor referred her to see one just to make sure she was taking the

news of a chronic disease ok and teach her coping skills along with the PT

and OT

this is a monster of a disease on these kids its hard for us to cope with it

imagine what these kids are doing we can help but it also takes

a group of support to also help tires easily also she talked with

the PT and she told melissa if she feels tired then rest thats her body

telling her it needs it

she reads alot now this is hard on them this disease has limited

from a hyper active child who never stopped cheerleader and her mind set

for the skys her goals are still high but she has limits and she takes them

one day at a time what hurt her most was having to give up cheerleading

running track

riding a bike and skating but little by little in the last 2 years shes

coming back lololol she rides her bike now and skates its coping skills

that shes learned

and the group of support she has and music that has helped her

Don't laugh at me by Mark Wills Who I Am by s i think

songs of inspiration and letting them see HEROS role models

and also how you handle it

we can manage this disease and do anything and have fun

each one of our kids need to be able to see other kids with this disease

talk with them it sure helped when she knew she wasnt ALONE

we need to get a day when these kids that want to just talk can talk

online

i better cut this its done got to long lololol

email me anytime

Robbin

[Guest guest]

Dayna

your right positive outlook

i told melissa its not the end of the world just another obstacle to go over

has homebound schooling where the teacher comes out

she dont get to go into school and hang out with kids her own age right now

her friends around here knows whats going on and she gets out with them

they are tight

when she was in school those same kids protected her

her peers understood what was going on wished they could help her

and they did

Robbin

[Guest guest]

Thanks Robbin!

has too asked the question "why did God give her this disease"? We believe strong in our faith and I know that we will get through-it's just going through the tough times that seem so unbearable at times.

What's even harder is trying to make a small child understand something that is hard to comprehend. Thanks for listening and mostly "understanding".

[Guest guest]

KAmitche

Hi to your 8 yr. old, yes this jra does tend to make your feel different,I too life with it, now for 34 years. But little one, no two people are alike, we are all different, whether you have jra M.D. M.S. Deaf or Blind.

A saying in the blind world, "everyone looks the same to me"

Your difference makes you unique, and no one judges you, for something you have no control over. And for those who do, well they need all the prayer we can offer them, for they lack something in their own personallities.

This dicease does make it for difficult for you to play all the games or sports you might be interested in, but then also has giving me a great more determination than others. It gives you a greater compassion for other, who as less fortunate. And although it may seem at times, like life with this jra is pretty bad, it does get better.

Good thoughts and Prayers

Rusty Limbs

On Fri, 18 Jan 2002 14:14:04 EST KAmitchemalways@... writes:

First of all, I'd like to say "thanks" to Georgina for an outstanding job she does with this site. It has been very helpful in many ways!I have an 8 yr. old (systemic) who recently has been displaying anger, sadness and frustration. At first I thought nothing much about it, but now it's getting pretty frequent and it breaks my heart to hear her say hurtful things about herself.I had a heart to heart talk with her a few days ago and from what she has told me, the "root" of the problem is the disease. She now is realizing that she is "different" and she told me she "hates her disease". I've always made it a policy to be as open as much as possible with everything from the disease to the lab work (so she wouldn't have any surprises). My question is does any of your children go through the "down in the dumps" phase and what do you do to help your child? Is there any sites on the internet that I can read to help us through this before it gets out of hand? I know the disease can be a monster and the medications can have some ill effects too.She tends to be in more pain than the usual and that's probably due to the cold weather and she also tends to push herself "beyond" her limits (she tires easily).If anyone has any suggestions I'd love to hear them! Thanks. Sincerely,

[Guest guest]

your so welcomed when the tough gets you down the tough gets going

my hubby still dont comprehend this disease his hands are tied and he dont

know what to say or do with melissa he asked me what to do

i told him shes your daughter your her dad treat her that way and enjoy

her

shes your little girl the one you always wanted dont sit back and just

watch her grow farther apart from you and away before you know it

theres times all melissa wants is to lay in his lap and watch tv this

disease has a hold on each parent in this group its how we attack this

monster

the love faith and hope and strength we have to know there will be a day

when we can say theres a cure for our kids

keep the head up and walk with pride

Robbin

[Guest guest]

Kellie

your mom was so right lololol only special people have special kids

Robbin

[Guest guest]

You may try a support group for JRA, They have camps for JRA is in the Northeast. I do not know where you are from. Being like other children is a big deal at her age. Talk with her rheumy and see if they have a therapist who may also talk to her. SHU

[Guest guest]

I'd appreciate any input on the subject of insurance. I had Blue Cross Anthem

and Rocky Mountain HMO. All of my doctor visits were denied because of

pre-existing. How do I overcome this/appeal. Of course I couldn't afford to

pay these huge bills and was sued by a collection agency to the tune of over

$5500. I also encountered that I did not qualify for my own insurance and/or

long term disability insurance because PA is considered a " cripling disease. " I

have applied for SSDI and am hoping that it goes through - I do have four

diseases that meet SS criteria. PA, Fibromyalgia, ADD and Depression. Also,

please give me the names of the companies where I can apply for medical coverage

and prescription coverage since I can no longer work and can't afford much of

anything. What is TEFTA? Since my profession as a paralegal involved using my

hands and fingers all day - I can't work anymore.

As far a pain meds - until one can get in to see a Rheumy or qualify for

sponsorship - my family doc really understands and treats the pain, along with

high doses of prednisone (love that puffy face). I know we all share the agony

and pain of this disease and I hope we can all help each other. God knows that

families and friends find this very difficult to understand. I know my family

thinks I just complain all the time - but when you can't walk, can't sleep or

enjoy those little things in life that use to give us pleasure - well, thank God

for the Group.

Please respond with any helpful information.

God Bless.

Kathy

[Editor's Note: Contact your State Insurance Commissioner's Office first thing

Monday morning. IF you were insured in your previous job and you worked long

enough AND within 30 days of leaving that job you signed on for the new

insurance, you CANNOT be denied insurance benefits for pre-existing conditions

under Federal COBRA legislation. Obviously, I don't know if you qualify for

COBRA and I don't know if your current policy specifically excluded pre-existing

conditions, but a discussion with the people in your Insurance Commissioner's

office should prove enlightening and helpful. Kathy F.]

Scar B <honeydipped77@...> wrote:

I agree with the editor's note... I don't see why your doctor would

say no to any of these other helpful drugs... Going out of Country may not do

any help, its your choice of course, but try either asking again or a NEW

doctor... No one says you cant try another doctor...

Love and Peace Always,

Shaun and Barb

[Guest guest]

Are you in Colorado? If you are, there's a state high risk pool (I believe it's

called Colorado Care) that will sell you insurance, and as long as you've had

coverage for at least 6 months previously with no more than a 60 day break, they

don't exclude pre-exisiting conditions.

[ ] Question to Group

I'd appreciate any input on the subject of insurance. I had Blue

Cross Anthem and Rocky Mountain HMO. All of my doctor visits were denied

because of pre-existing. How do I overcome this/appeal. Of course I couldn't

afford to pay these huge bills and was sued by a collection agency to the tune

of over $5500. I also encountered that I did not qualify for my own insurance

and/or long term disability insurance because PA is considered a " cripling

disease. " I have applied for SSDI and am hoping that it goes through - I do

have four diseases that meet SS criteria. PA, Fibromyalgia, ADD and Depression.

Also, please give me the names of the companies where I can apply for medical

coverage and prescription coverage since I can no longer work and can't afford

much of anything. What is TEFTA? Since my profession as a paralegal involved

using my hands and fingers all day - I can't work anymore.

As far a pain meds - until one can get in to see a Rheumy or qualify for

sponsorship - my family doc really understands and treats the pain, along with

high doses of prednisone (love that puffy face). I know we all share the agony

and pain of this disease and I hope we can all help each other. God knows that

families and friends find this very difficult to understand. I know my family

thinks I just complain all the time - but when you can't walk, can't sleep or

enjoy those little things in life that use to give us pleasure - well, thank God

for the Group.

Please respond with any helpful information.

God Bless.

Kathy

[Editor's Note: Contact your State Insurance Commissioner' s Office first thing

Monday morning. IF you were insured in your previous job and you worked long

enough AND within 30 days of leaving that job you signed on for the new

insurance, you CANNOT be denied insurance benefits for pre-existing conditions

under Federal COBRA legislation. Obviously, I don't know if you qualify for

COBRA and I don't know if your current policy specifically excluded pre-existing

conditions, but a discussion with the people in your Insurance Commissioner' s

office should prove enlightening and helpful. Kathy F.]

[Guest guest]

That is odd Anne, is there chance of mold or anything like that in the house?

There has to be something, its just a matter of finding it at this point.

Good luck I wish I had more suggestions.

Chelly

Vaccinations

From: kacooster@...

Date: Tue, 28 Jul 2009 11:27:01 -0700

Subject: RE: question to group

I only use seventh generation for laundry, and vinegar and water on the floors I

don't use Clorox or bleach or any other chemical that's why I'm really

scratching my head on this one.

From: Cheryl Mercer <cheryl.mercer@...>

Subject: RE: question to group

vaccinations

Date: Tuesday, July 28, 2009, 2:21 PM

Hi Anne,

What are you using around the home to clean and such?

I found my son was having bouts of illness when he was young as a result of what

his daycare was cleaning with - It took a while ot figure out and notice a

pattern for my son (he generally got ill on a Friday and thats what triggered me

to start looking around)

Chelly

Vaccinations

From: kacooster (DOT) com

Date: Tue, 28 Jul 2009 11:11:40 -0700

Subject: question to group

Group,

~Hello to everyone, I hope you can help, I'm really not sure what to think of

this, I have 3 boys and a hubby, we are all sick AGAIN this is like the 3rd time

this year, we eat VERY healthy, I only buy organic fruits and veggies, and they

are eaten everyday, we take good vitamins, and we don't vax my youngest was

never vaxed. I just don't know what to think of this we have been sick for a

week. We don't use dairy. I feel like I'm doing something wrong for us to be

sick like this all the time. We have runny nose, my one son has cough, my other

has diareah (sp) and vomit. My husband has sore ear (any suggestions for ear

ache help) and my temple is hurting VERY bad. I can't believe all we do to try

to eat healthy and take care of ourselves and it's like it just back fires.

Thanks

~Anne

[Guest guest]

At 11:11 AM 7/28/2009, you wrote:

>Group,

> ~Hello to everyone, I hope you can help, I'm really not

> sure what to think of this, I have 3 boys and a hubby, we are all

> sick AGAIN this is like the 3rd time this year, we eat VERY

> healthy, I only buy organic fruits and veggies, and they are eaten

> everyday, we take good vitamins, and we don't vax my youngest was

> never vaxed. I just don't know what to think of this we have been

> sick for a week. We don't use dairy. I feel like I'm doing

> something wrong for us to be sick like this all the time. We have

> runny nose, my one son has cough, my other has diareah and vomit.

> My husband has sore ear (any suggestions for ear ache help) and my

> temple is hurting VERY bad. I can't believe all we do to try to

> eat healthy and take care of ourselves and it's like it just back fires.

>Thanks

>~Anne

Do you all take Vitamin D? They have recently found we need much

more than we ever get.

Also where do you live? Is it toxic outside? Mold possibly in your house?

Sheri

PS will send earache info