Re: SCARED to start mtx but daughter is in pain please help

June 4, 2008

Hi Kim, My daughter has had systemic jra for 9 years. I know you are scared of mtx. I was, too. Looking back now, it is my greatest regret that I didn't put our daughter on it sooner. Methotrexate takes about 8 weeks to start taking effect. Sometimes, prednisone is given until mtx can start to work. Joint injections might be an option for some of the stubborn joints. We have tried naturopathic options with n, but never alone. She does take fish pills. I think they are a healthy thing to take. It is only my humble opinion, but I think systemic JRA is far too serious of a disease to treat without medications such as methotrexate, enbrel, kineret, prednisone, etc. Systemic jra is a chronic, episodic disease. So if you change one variable, such as diet, you may see an improvement, but be cautious. You might have seen that improvement without changing any variables. Kim, some systemics go into remission and some do not. There is no crystal ball. Our daughter has never been in remission. She has never been off of medication either. So here is an example for you. A child that has had systemic jra for nine years, no remission, and medication for 9 straight years. She finished grade school, she went to high school, participated in track, worked in the summers, graduated high school, and is finishing up her first year of college. It hasn't been perfect, but she is a young, beautiful, happy woman of 19 now. Folic acid prevents the side effects of mtx. n has never had any side effects from mtx, but every child is different. Don't worry about things before it is time. Try the methotrexate. Give her the folic acid. She might not have any side effects. If she does, deal with them one at a time. A naturopath isn't going to make her systemic jra go away. I wish it were that easy. Take care, (n, 19, systemic)On Jun 3, 2008, at 10:36 AM, Kim Newman wrote:hi,I have been a hovering new member for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home. After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again. She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them. I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it? What other side effects happened?Thank you so muchKim

June 4, 2008

Hi Kim,

I just wanted to say that I agree with , 100%. My son was diagnosed with systemic onset JRA at age 4. I regret that I didn't push harder the rheumy to start mtx sooner than I did - had I done so, he may not have had to battle as much of the side affects of his long term steriods. I was the one to push for starting mtx - because we had to try it before going on to other treatment such as enbrel and eventually, I thought, kineret. But, the mtx made the difference & I haven't regretted for a moment that decision. It made the difference between a boy spending 2 -3 weeks a school year (and more during the summer) in the hospital to no admissions for the 3rd school year in a row this year - and almost no days lost from school this year due to his JRA.

Val

Rob's Mom (10,systemic)

Re: SCARED to start mtx but daughter is in pain please help

Hi Kim,

My daughter has had systemic jra for 9 years. I know you are scared of mtx. I was, too. Looking back now, it is my greatest regret that I didn't put our daughter on it sooner. Methotrexate takes about 8 weeks to start taking effect. Sometimes, prednisone is given until mtx can start to work. Joint injections might be an option for some of the stubborn joints.

We have tried naturopathic options with n, but never alone. She does take fish pills. I think they are a healthy thing to take. It is only my humble opinion, but I think systemic JRA is far too serious of a disease to treat without medications such as methotrexate, enbrel, kineret, prednisone, etc. Systemic jra is a chronic, episodic disease. So if you change one variable, such as diet, you may see an improvement, but be cautious. You might have seen that improvement without changing any variables.

Kim, some systemics go into remission and some do not. There is no crystal ball. Our daughter has never been in remission. She has never been off of medication either. So here is an example for you. A child that has had systemic jra for nine years, no remission, and medication for 9 straight years. She finished grade school, she went to high school, participated in track, worked in the summers, graduated high school, and is finishing up her first year of college. It hasn't been perfect, but she is a young, beautiful, happy woman of 19 now.

Folic acid prevents the side effects of mtx. n has never had any side effects from mtx, but every child is different. Don't worry about things before it is time. Try the methotrexate. Give her the folic acid. She might not have any side effects. If she does, deal with them one at a time.

A naturopath isn't going to make her systemic jra go away. I wish it were that easy. Take care, (n, 19, systemic)

On Jun 3, 2008, at 10:36 AM, Kim Newman wrote:

hi,

I have been a hovering new member for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home.

After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again.

She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them.

I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it? What other side effects happened?

Thank you so much

Kim

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June 4, 2008

Hi Kim

My daughter, Jackie, got systemic JRA at 3. She is now 11 and have not had a flear since she was 5. There is one resaon to that that is greater than anything else I've done. I took her of sugar. No refined sugar, no sodas, no candy, no sweet crackers etc. I also lowered the foods we aet that quickly turns into sugar, like potatoes.

Instead I gave her a little bit of natural sweetners like maple syrup grade B and preferably organic. As treats instead of candy I gave her rasberries, strawberries and blueberries (has lots of antioxidants), melons of different kinds. I also gave her smoothies instead of sodas and mostly water with lime in. We ate more fish, like salomon and deepsea fishes like mahimahi. Nothing farmraised, thoose usually has a lot of antibiotics in them and has been raised on all kind of wird foods.

It took a couple of weeks to notice a difference. Well the sugar I noticed right away because she was at the point that when she had candy she would get 104 in fever within 6 hours. I also noticed very clearly that she would get a flare if I and my husband would argue infront of her. When we seperated, that helped her flares a lot. With this I mean to say that I think a lot off what is going on around the child affects there JRA emotionaly.

Our homeopath gave Jackie some very helpful remedies but until I removed the source that cased the body to react with this pattern of symptoms that syst. JRA is, it would always come back after a while because the body gets used to the drug and it looses effect and if the child is still getting the things that trigger the symptoms, it will be back.

I think our bodys is like a glass. When you have filled it up with wrong things it will overflow. But because it is full it will overflow very easily again. When I removed the things that triggered my daughters symptoms it's as if the glass got a little emptier for each week so today, she can tolerate a certain amount of the foods that triggers her but noy continue the products for a long time. For instance, we have soda once a week now, and I buy the one from Hansen that is sweetend with cane juice. Then ofcourse she will have a sprite or coke too but she doesn't flare from it since it's just once in a while.

If you have a chance to find a book about acid/alkaline foods, that would help you the most. We tried macrobiotic for 6 months but the diet is hard for a child to be on even though she benefited a lot from it. I think if you balance the Ph that will help a lot.

Good Luck

, mom to Jackie, 11, syst.poly JRA

From: kim.newman@...Date: Tue, 3 Jun 2008 10:36:58 -0700Subject: SCARED to start mtx but daughter is in pain please help

hi,I have been a hovering new member for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home. After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again. She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them. I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it? What other side effects happened?Thank you so muchKim Instantly invite friends from Facebook and other social networks to join you on Windows Live™ Messenger. Invite friends now!

June 4, 2008

Hi Kim,

My name is Elaine. I have a daughter who will be two next month. Her

name is , and she has polyarticular JRA. I had to push the

doctors so hard for a diagnosis. Even after they accused us of causing

the swollen finger and leg. Us moms just know when something is wrong,

and want whats best for our children. It took us many many months to

figure out what was wrong with her. I know how hard it was and still

is everyday for you and your little one.

had almost every joint involved, except for a few fingers and a

few toes. I was so scared to try the methotrexate as well. It is so

scary to put children on such serious drugs. My daughter has

never been able to stand or crawl any other way than army style. We

look back these two years, and realize she had this disease possibly

since birth. The Naproxen plateaued like I had feared it might after a

few months, and our next step was Methotrexate.

Since starting the methotrexate two months ago, she is cruising

furniture, climbing stairs. She still continues the Naproxen twice

daily, and takes 4 small Methotrexate pills once a week. I crush them

up and mix with chocolate pudding. I have my eye out for the side

effects, but this drug truly works miracles. I pray every day this one

will work..xxxxxx my fingers too. I know the side effects are scary,

but seeing my daughter active for the first time ever is worth it for us.

Best wishes Kim, and good luck with whater you decide is right for

your daughter.

Lani

>

> hi,

>

> I have been a hovering new member for a few weeks now and wanted to

get some

> input from you all. My daughter just turned 3 a few months ago and

has had

> systemic JRA for a year now. She became ill right around her 2nd

birthday

> with these unexplained daily fevers that would spike in the evening

to as

> high at 105.5. She was also in general pain and her hips hurt. She

would

> wake up in the morning looking and feeling ok but by the afternoon

she was

> covered in hives from head to toe and the Tylenol or Motrin would

take hours

> to work and then wear off sooner than it should. The doctors kept

telling

> us it was a virus but as the months passed and she stopped playing

or moving

> and eventually stopped eating and drinking and lost weight they put

her in

> the hospital and tested her for every thing you can imagine. They

could not

> find anything and every doctor kept referring us to another doctor

because

> no on had answers. I kept asking the rheum if it was arthritis

because her

> hips hurt so bad and her right middle finger had become swollen but

he said

> not because the hips showed no swelling and the finger he thought

was only

> tissue swelling. They put her on a 10 day dose of steroids after

all the

> tests were negative and she did better and started eating and

drinking again

> so we went home.

>

> After about 2 weeks at home she stopped eating and drinking again

and was in

> so much pain it was horrible and her fevers were horribly scary. They

> hospitalized her again and this time did more involved tests such as

MRI's,

> CT scans, bone scans and eventually a bone marrow tap. They did

find she

> had aspiration pneumonia as well as a slightly swollen liver and

spleen but

> nothing too horrible. They put her on an antihistamine for the

hives and

> sent us home. After a few more weeks her right knee swelled up and

I took

> her to the rheum and he said that with that knee now involved he would

> hesitantly give her the diagnosis of systemic JRA and started her on

daily

> steroids. I hated the steroids as you all know caused her to be

cranky but

> she gained so much weight so fast and was always hungry. I started

her on

> fish oil and it helped so we weaned the steroids down over 5 months.

She

> was doing wonderfully and had not had any swelling, pain, hives,

fevers or

> anything for 4 months then it all started again.

>

> She is having the horrible hives daily but the fever is not a regular

> occurance as it once was and if it does come it is easily treatable.

The

> problem is she has both ankles, one knee, 3 fingers and who knows

what other

> joints involved now. I have been working with a

naturopathic/homeopathic

> doctor for 5 weeks now and had her on a gluten free diet for 6 weeks

now and

> she just keeps getting worse. She even had a nodule on her ankle

that I was

> able to get to go away with a homepathic cream. The natural doc says it

> will take time to heal her but it could get worse before it gets

better and

> not to start her on the drugs. I want that to be true but she is losing

> hair now because of laying down so much and won't move around much

at all.

> On top of it all she has Down syndrome so she is already behind and

it is

> much worse now. She won't even try and walk or crawl. I feel like

I have

> to start her on the methatrexate and steroids but am so scared of

the long

> term and short term affects of them.

>

> I want to hear how your kids have faired on these drugs both short

term and

> after years of either being on them or years after getting off from

them.

> Is it better to ride out the natural treatment or do the drugs which

in my

> opinion is poison? How soon did the mtx work for your child? How

many of

> your kids went into the remission that the doc talks about from it? Did

> their hair fall out? Did they get the mouth sores and how did you treat

> it? What other side effects happened?

>

> Thank you so much

> Kim

>

June 4, 2008

That actually reminds me, although I don't have a classification of systemic JAS, my disease has had several systemic features. Almost three months ago I went off gluten, it hasn't been particularly easy but I am feeling a difference. It's also worth a shot. But I agree with when she says that homeopathic medication can be a great addition to those medications, but the medications are still necessary.Love always; (JAS, 23) Gentile <scandinavia_today@...> wrote: Hi Kim My daughter, Jackie, got

systemic JRA at 3. She is now 11 and have not had a flear since she was 5. There is one resaon to that that is greater than anything else I've done. I took her of sugar. No refined sugar, no sodas, no candy, no sweet crackers etc. I also lowered the foods we aet that quickly turns into sugar, like potatoes. Instead I gave her a little bit of natural sweetners like maple syrup grade B and preferably organic. As treats instead of candy I gave her rasberries, strawberries and blueberries (has lots of antioxidants), melons of different kinds. I also gave her smoothies instead of sodas and mostly water with lime in. We ate more fish, like salomon and deepsea fishes like mahimahi. Nothing farmraised, thoose usually has a lot of antibiotics in them and has been raised on all kind of wird foods. It took a couple of weeks to notice a difference. Well the sugar I noticed right away because she was at the point that when she had candy she would get 104 in

fever within 6 hours. I also noticed very clearly that she would get a flare if I and my husband would argue infront of her. When we seperated, that helped her flares a lot. With this I mean to say that I think a lot off what is going on around the child affects there JRA emotionaly. Our homeopath gave Jackie some very helpful remedies but until I removed the source that cased the body to react with this pattern of symptoms that syst. JRA is, it would always come back after a while because the body gets used to the drug and it looses effect and if the child is still getting the things that trigger the symptoms, it will be back. I think our bodys is like a glass. When you have filled it up with wrong things it will overflow. But because it is full it will overflow very easily again. When I removed the things that triggered my daughters symptoms it's as if the glass got a little emptier for each week so today, she can tolerate a certain amount of the foods that

triggers her but noy continue the products for a long time. For instance, we have soda once a week now, and I buy the one from Hansen that is sweetend with cane juice. Then ofcourse she will have a sprite or coke too but she doesn't flare from it since it's just once in a while. If you have a chance to find a book about acid/alkaline foods, that would help you the most. We tried macrobiotic for 6 months but the diet is hard for a child to be on even though she benefited a lot from it. I think if you balance the Ph that will help a lot. Good Luck , mom to Jackie, 11, syst.poly JRA From: kim.newmangmailDate: Tue, 3 Jun 2008 10:36:58 -0700Subject: SCARED to start mtx but daughter is in pain please help hi,I have been a hovering new member

for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her

hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home. After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis

of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again. She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to

heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them. I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it?

What other side effects happened?Thank you so muchKim Instantly invite friends from Facebook and other social networks to join you on Windows Live™ Messenger. Invite friends now! Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703

June 4, 2008

Hi Everyone, I usually don't respond, but I thought this was important to respond to. I am 29 years old and was diagnosed with poly jra at age 4. I started on Methotrexate when i was 9 years old and have been on it pretty regularly since then. There have really been no long term problems at all with the drug. I was on many different doses (we stopped at 14mg, that seems to work the best). But i never lost my hair, had mouth sores, etc. Just remember to get the lab tests that the doctors recommend regularly. I think the biggest pain with Methotrexate is that you feel a little sick to your stomach the night you take it. So i try to take it on sunday night right as i go to bed. That way when my stomach hurts i am sleeping and it doesnt really bother me. Hope this helps. le29 poly jra From: carneyval@...Date: Wed, 4 Jun 2008 09:29:53 -0400Subject: Re: SCARED to start mtx but daughter is in pain please help

Hi Kim,

I just wanted to say that I agree with , 100%. My son was diagnosed with systemic onset JRA at age 4. I regret that I didn't push harder the rheumy to start mtx sooner than I did - had I done so, he may not have had to battle as much of the side affects of his long term steriods. I was the one to push for starting mtx - because we had to try it before going on to other treatment such as enbrel and eventually, I thought, kineret. But, the mtx made the difference & I haven't regretted for a moment that decision. It made the difference between a boy spending 2 -3 weeks a school year (and more during the summer) in the hospital to no admissions for the 3rd school year in a row this year - and almost no days lost from school this year due to his JRA.

Val

Rob's Mom (10,systemic)

Re: SCARED to start mtx but daughter is in pain please help

Hi Kim,

My daughter has had systemic jra for 9 years. I know you are scared of mtx. I was, too. Looking back now, it is my greatest regret that I didn't put our daughter on it sooner. Methotrexate takes about 8 weeks to start taking effect. Sometimes, prednisone is given until mtx can start to work. Joint injections might be an option for some of the stubborn joints.

We have tried naturopathic options with n, but never alone. She does take fish pills. I think they are a healthy thing to take. It is only my humble opinion, but I think systemic JRA is far too serious of a disease to treat without medications such as methotrexate, enbrel, kineret, prednisone, etc. Systemic jra is a chronic, episodic disease. So if you change one variable, such as diet, you may see an improvement, but be cautious. You might have seen that improvement without changing any variables.

Kim, some systemics go into remission and some do not. There is no crystal ball. Our daughter has never been in remission. She has never been off of medication either. So here is an example for you. A child that has had systemic jra for nine years, no remission, and medication for 9 straight years. She finished grade school, she went to high school, participated in track, worked in the summers, graduated high school, and is finishing up her first year of college. It hasn't been perfect, but she is a young, beautiful, happy woman of 19 now.

Folic acid prevents the side effects of mtx. n has never had any side effects from mtx, but every child is different. Don't worry about things before it is time. Try the methotrexate. Give her the folic acid. She might not have any side effects. If she does, deal with them one at a time.

A naturopath isn't going to make her systemic jra go away. I wish it were that easy. Take care, (n, 19, systemic)

On Jun 3, 2008, at 10:36 AM, Kim Newman wrote:

hi,

I have been a hovering new member for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home.

After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again.

She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them.

I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it? What other side effects happened?

Thank you so much

Kim

Stay informed, get connected and more with AOL on your phone.

June 4, 2008

My daughter also showed her first symptoms right around her 2nd

birthday. Both ankles and both knees were effected by the time she

was 3 yrs. old but the JRA had started in just her left knee.

We saw many, many specialists and everything pointed to JRA finally.

But although we were certain it was JRA we still had to wait 3 months

for our initial rheumy appt. I was similar to you, I wanted to at

least try all the natural/alternative medicine available to us so

long as we were waiting. Made me feel more in control in some way

when things were obviously completely out of my control. At least I

could rub the homeopathic Zeel cream on her knee at night, and give

her warm baths, and even tried Reiki, cut out all dairy. She was

walking again and didn't even have much pain by the time our first

rheumy appt. finally came.

She was put on Ibuprofen, then a few months later Naprosyn. Long

story short, her JRA spread over the next year to 3 other joints. I

was also scared and hesitant to put a 3 year old on Methotrexate.

BUT, Isabelle's JRA symptoms completely went away within about 4

weeks! We slowly stopped the Ibuprofen and for a couple months she

only needed it when she got some virus. It has almost been a year

now that she has been in remission.

I am a firm believer in natural medicine too and we continue to give

her fish oil, bromelain enzyme and lots of probiotics. Knock on my

head, she's doing great. My advice to you would be to continue with

your natural means alomg WITH the MTX if that's what your Rheumy's

next step would be. Be open with your doc about whatever else you

are doing. They may poo poo it, but they need to be aware of any

possible interactions. My rheumt laughs at me. It doesn't bother

me --- I know it's helping .

HTH, Hadley (Isabelle, 4 yrs.)

>

> hi,

>

> I have been a hovering new member for a few weeks now and wanted to

get some

> input from you all. My daughter just turned 3 a few months ago and

has had

> systemic JRA for a year now. She became ill right around her 2nd

birthday

> with these unexplained daily fevers that would spike in the evening

to as

> high at 105.5. She was also in general pain and her hips hurt.

She would

> wake up in the morning looking and feeling ok but by the afternoon

she was

> covered in hives from head to toe and the Tylenol or Motrin would

take hours

> to work and then wear off sooner than it should. The doctors kept

telling

> us it was a virus but as the months passed and she stopped playing

or moving

> and eventually stopped eating and drinking and lost weight they put

her in

> the hospital and tested her for every thing you can imagine. They

could not

> find anything and every doctor kept referring us to another doctor

because

> no on had answers. I kept asking the rheum if it was arthritis

because her

> hips hurt so bad and her right middle finger had become swollen but

he said

> not because the hips showed no swelling and the finger he thought

was only

> tissue swelling. They put her on a 10 day dose of steroids after

all the

> tests were negative and she did better and started eating and

drinking again

> so we went home.

>

> After about 2 weeks at home she stopped eating and drinking again

and was in

> so much pain it was horrible and her fevers were horribly scary.

They

> hospitalized her again and this time did more involved tests such

as MRI's,

> CT scans, bone scans and eventually a bone marrow tap. They did

find she

> had aspiration pneumonia as well as a slightly swollen liver and

spleen but

> nothing too horrible. They put her on an antihistamine for the

hives and

> sent us home. After a few more weeks her right knee swelled up and

I took

> her to the rheum and he said that with that knee now involved he

would

> hesitantly give her the diagnosis of systemic JRA and started her

on daily

> steroids. I hated the steroids as you all know caused her to be

cranky but

> she gained so much weight so fast and was always hungry. I started

her on

> fish oil and it helped so we weaned the steroids down over 5

months. She

> was doing wonderfully and had not had any swelling, pain, hives,

fevers or

> anything for 4 months then it all started again.

>

> She is having the horrible hives daily but the fever is not a

regular

> occurance as it once was and if it does come it is easily

treatable. The

> problem is she has both ankles, one knee, 3 fingers and who knows

what other

> joints involved now. I have been working with a

naturopathic/homeopathic

> doctor for 5 weeks now and had her on a gluten free diet for 6

weeks now and

> she just keeps getting worse. She even had a nodule on her ankle

that I was

> able to get to go away with a homepathic cream. The natural doc

says it

> will take time to heal her but it could get worse before it gets

better and

> not to start her on the drugs. I want that to be true but she is

losing

> hair now because of laying down so much and won't move around much

at all.

> On top of it all she has Down syndrome so she is already behind and

it is

> much worse now. She won't even try and walk or crawl. I feel like

I have

> to start her on the methatrexate and steroids but am so scared of

the long

> term and short term affects of them.

>

> I want to hear how your kids have faired on these drugs both short

term and

> after years of either being on them or years after getting off from

them.

> Is it better to ride out the natural treatment or do the drugs

which in my

> opinion is poison? How soon did the mtx work for your child? How

many of

> your kids went into the remission that the doc talks about from

it? Did

> their hair fall out? Did they get the mouth sores and how did you

treat

> it? What other side effects happened?

>

> Thank you so much

> Kim

>

June 4, 2008

Hi Kim:

It sounds like you've been through so much and I don't know if my

advice will help, but here is what I can contribute.

I decided to be aggressive with my daughter's JRA because she had such

a poor quality of life that I couldn't stand to just " watch her exist "

and not enjoy life. We now use the Methotrexate and Humira along with

a sleeping aid (Elavil). She is a different person, enjoying regular

activities with fewer flares. I believe the risks to be worth the

chance that can live a pain-free life. is 15, so she is

older than your daughter. I don't know what your general doctor

recommends, but sometimes the natural methods can be used in

conjunction with traditional medications.

I hope your daughter will be better soon and that you are able to

reach some decisions that you are at peace with.

June 4, 2008

Dear Kim:

My son experienced swollen knees, ankles, feet, hands and who know what else shortly after a parvo virus went through our grade school and he was 9 in 4th grade. He had a mild reaction to the virus. His sister had a raging case of it. We told him that his leg pain was growing pains until he couldn't get out of bed and get down the stairs.

Then we started the visits to our family doctor. We went for 3 months almost weekly with changing medicines until they said we needed to go to children's hospital in Philadelphia. There we were told right away that he had poly JRA. They injected the most swollen joints (knees) with corticosteroids and he went on prednisone for 2 weeks until the MTX took hold. He also took naproxen (same thing as aleve - only larger dosage).

We were in shock, as we were holding out that he was suffering from lymes disease. We didn't want to put the drugs into our son. The doctors said that is was up to us but that the longer he went un treated, the more deterioration took place as swelling equals active destruction of joint.

He loss some hair. Not much. He swelled up from steriods. That lasted for some time. He gets tired easily. We adjust our lives, and must remind ourselves regularly, that he gets tired more easily than other people. that is important to understand in that it it is difficult to recognize that JRA kids do not have energy.

He is 15 now. He was weaned off all medication after 3 years but the disease activity returned after an 8 month drug free period . He went back on the MTX. There was an adjustment to the medication that was quite pronounced and which caused us to drop everything and support him in that he had trouble concentrating and had low energy (from the illness and the medicine). He is fabulous now. But, that is relative.

We always are aware of how much energy he expends in a day or in a sports game. or, how much stress does he experience and try to compensate by going to bed early

Do we want him to be off the medicine? YES. Is that likely? NO. Life is different, but no different than having to adjust to any other experience that determines your daily routines. It is just our daily, weekly routine to take folic acid, and inject once a week.

I believe the more aggressively you attack the illness the better off your child will be.

HOWEVER YOU PURSUE THIS, MY BEST WISHES.

In a message dated 6/4/2008 4:23:19 P.M. Eastern Daylight Time, joann@... writes:

Kim, first let me send you a cyber hug. I canâ€™t imagine what I would feel if this beast had shown up when Zoe was that young. We are dealing with Pauciarticular JRA and (knock on wood) it has only been discovered in one joint. I am doing a totally natural/homeopathic program with Zoe at this time. We do Motrin as needed or if I notice Zoe seems really stiff, but other than that, it has been all diet changes (gluten/allergen free), herbal supplements, lots of various vitamins and homeopathies. We were able to knock down the swelling quickly and the rheumy has been okay with this course.

With all this in mind, if we were dealing with systemic or more joints, I am not sure I would be doing a totally natural program. I am sure I would be talking with my naturopath about doing them in combination and when stable working to remove the traditional meds.

I understand where you are on avoiding the â€œtoxinsâ€ of traditional medications, but the goal is to make your daughter feel better and pain free. I do not have the answer for you but hope by talking with your doctor and your naturopath you can find a course of treatment that helps your daughter.

My thoughts are with you .

Joann

Zoe, Pauci JRA, natural/alternative treatments

From: [mailto: ] On Behalf Of Kim NewmanSent: Tuesday, June 03, 2008 1:37 PM Subject: SCARED to start mtx but daughter is in pain please help

hi,I have been a hovering new member for a few weeks now and wanted to get some input from you all. My daughter just turned 3 a few months ago and has had systemic JRA for a year now. She became ill right around her 2nd birthday with these unexplained daily fevers that would spike in the evening to as high at 105.5. She was also in general pain and her hips hurt. She would wake up in the morning looking and feeling ok but by the afternoon she was covered in hives from head to toe and the Tylenol or Motrin would take hours to work and then wear off sooner than it should. The doctors kept telling us it was a virus but as the months passed and she stopped playing or moving and eventually stopped eating and drinking and lost weight they put her in the hospital and tested her for every thing you can imagine. They could not find anything and every doctor kept referring us to another doctor because no on had answers. I kept asking the rheum if it was arthritis because her hips hurt so bad and her right middle finger had become swollen but he said not because the hips showed no swelling and the finger he thought was only tissue swelling. They put her on a 10 day dose of steroids after all the tests were negative and she did better and started eating and drinking again so we went home. After about 2 weeks at home she stopped eating and drinking again and was in so much pain it was horrible and her fevers were horribly scary. They hospitalized her again and this time did more involved tests such as MRI's, CT scans, bone scans and eventually a bone marrow tap. They did find she had aspiration pneumonia as well as a slightly swollen liver and spleen but nothing too horrible. They put her on an antihistamine for the hives and sent us home. After a few more weeks her right knee swelled up and I took her to the rheum and he said that with that knee now involved he would hesitantly give her the diagnosis of systemic JRA and started her on daily steroids. I hated the steroids as you all know caused her to be cranky but she gained so much weight so fast and was always hungry. I started her on fish oil and it helped so we weaned the steroids down over 5 months. She was doing wonderfully and had not had any swelling, pain, hives, fevers or anything for 4 months then it all started again. She is having the horrible hives daily but the fever is not a regular occurance as it once was and if it does come it is easily treatable. The problem is she has both ankles, one knee, 3 fingers and who knows what other joints involved now. I have been working with a naturopathic/homeopathic doctor for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just keeps getting worse. She even had a nodule on her ankle that I was able to get to go away with a homepathic cream. The natural doc says it will take time to heal her but it could get worse before it gets better and not to start her on the drugs. I want that to be true but she is losing hair now because of laying down so much and won't move around much at all. On top of it all she has Down syndrome so she is already behind and it is much worse now. She won't even try and walk or crawl. I feel like I have to start her on the methatrexate and steroids but am so scared of the long term and short term affects of them. I want to hear how your kids have faired on these drugs both short term and after years of either being on them or years after getting off from them. Is it better to ride out the natural treatment or do the drugs which in my opinion is poison? How soon did the mtx work for your child? How many of your kids went into the remission that the doc talks about from it? Did their hair fall out? Did they get the mouth sores and how did you treat it? What other side effects happened?Thank you so muchKim

O'Connor President Rail Systems, Inc.22 North Greenwood Ave.Hopewell, NJ 08525609-466-4114Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

June 4, 2008

Kim, first let me send you a cyber hug. I can’t

imagine what I would feel if this beast had shown up when Zoe was that

young. We are dealing with Pauciarticular JRA and (knock on wood)

it has only been discovered in one joint. I am doing a totally

natural/homeopathic program with Zoe at this time. We do Motrin as needed

or if I notice Zoe seems really stiff, but other than that, it has been all

diet changes (gluten/allergen free), herbal supplements, lots of various

vitamins and homeopathies. We were able to knock down the swelling quickly

and the rheumy has been okay with this course.

With all this in mind, if we were dealing with systemic or more

joints, I am not sure I would be doing a totally natural program. I am

sure I would be talking with my naturopath about doing them in combination and

when stable working to remove the traditional meds.

I understand where you are on avoiding the “toxins”

of traditional medications, but the goal is to make your daughter feel better

and pain free. I do not have the answer for you but hope by talking with

your doctor and your naturopath you can find a course of treatment that helps

your daughter.

My thoughts are with you .

Joann

Zoe, Pauci JRA, natural/alternative treatments

From:

[mailto: ] On Behalf Of Kim Newman

Sent: Tuesday, June 03, 2008 1:37 PM

Subject: SCARED to start mtx but daughter is in pain please help

hi,

I have been a hovering new member for a few weeks now and wanted to get some

input from you all. My daughter just turned 3 a few months ago and has

had systemic JRA for a year now. She became ill right around her 2nd

birthday with these unexplained daily fevers that would spike in the evening to

as high at 105.5. She was also in general pain and her hips hurt.

She would wake up in the morning looking and feeling ok but by the afternoon

she was covered in hives from head to toe and the Tylenol or Motrin would take

hours to work and then wear off sooner than it should. The doctors kept

telling us it was a virus but as the months passed and she stopped playing or

moving and eventually stopped eating and drinking and lost weight they put her

in the hospital and tested her for every thing you can imagine. They

could not find anything and every doctor kept referring us to another doctor

because no on had answers. I kept asking the rheum if it was arthritis

because her hips hurt so bad and her right middle finger had become swollen but

he said not because the hips showed no swelling and the finger he thought was

only tissue swelling. They put her on a 10 day dose of steroids after all

the tests were negative and she did better and started eating and drinking

again so we went home.

After about 2 weeks at home she stopped eating and drinking again and was in so

much pain it was horrible and her fevers were horribly scary. They

hospitalized her again and this time did more involved tests such as MRI's, CT

scans, bone scans and eventually a bone marrow tap. They did find she had

aspiration pneumonia as well as a slightly swollen liver and spleen but nothing

too horrible. They put her on an antihistamine for the hives and sent us

home. After a few more weeks her right knee swelled up and I took her to

the rheum and he said that with that knee now involved he would hesitantly give

her the diagnosis of systemic JRA and started her on daily steroids. I

hated the steroids as you all know caused her to be cranky but she gained so

much weight so fast and was always hungry. I started her on fish oil and

it helped so we weaned the steroids down over 5 months. She was doing

wonderfully and had not had any swelling, pain, hives, fevers or anything for 4

months then it all started again.

She is having the horrible hives daily but the fever is not a regular occurance

as it once was and if it does come it is easily treatable. The problem is

she has both ankles, one knee, 3 fingers and who knows what other joints

involved now. I have been working with a naturopathic/homeopathic doctor

for 5 weeks now and had her on a gluten free diet for 6 weeks now and she just

keeps getting worse. She even had a nodule on her ankle that I was able

to get to go away with a homepathic cream. The natural doc says it will

take time to heal her but it could get worse before it gets better and not to

start her on the drugs. I want that to be true but she is losing hair now

because of laying down so much and won't move around much at all. On top

of it all she has Down syndrome so she is already behind and it is much worse

now. She won't even try and walk or crawl. I feel like I have to

start her on the methatrexate and steroids but am so scared of the long term

and short term affects of them.

I want to hear how your kids have faired on these drugs both short term and

after years of either being on them or years after getting off from them.

Is it better to ride out the natural treatment or do the drugs which in my

opinion is poison? How soon did the mtx work for your child? How

many of your kids went into the remission that the doc talks about from

it? Did their hair fall out? Did they get the mouth sores and how

did you treat it? What other side effects happened?

Thank you so much

Kim

June 5, 2008

I have an eight year old daughter that has had systemic jra since the

age of three. I think the most important thing you can do is make

informed decisions for your child. That means researching systemic

jra as well as the treatments. Our stories sound so similar and I am

very familiar with the overwhelming pain that occurs at the onset of

systemic jra. The more I researched systemic jra and saw pictures of

the damage that can be done, the more my husband and I chose the

aggressive path of treatment. When I read that 50% of systemics that

go on to have poly arthritis become physically disabled, I realized

that we need to treat this disease with some big guns. For me, I am

more afraid of what the disease can do to my daughter and the quality

of life it can take away from her than I am any undocumented, unknown

side effects from drugs. Our daughter never really experienced any

side effects from MTX adn she takes a daily folic acid supplement

also.

That is not to say I worry that down the road I may be sorry about

the choices we have made, but my daughter was literally on the couch

not living life, and this was at age 3. We chose to start her on

Naprosen, 3 months later start MTX, 3 months later start Enbrel. Now

she is on MTX and Humira, and she still has some symptoms, but she is

able to attend school and do pretty much what any other 8 year old

can do.

The decisions are not easy, and I wish you peace of mind.

Take care.

Sophie

's mom, systemic jra, age 8

>

> hi,

>

> I have been a hovering new member for a few weeks now and wanted to

get some input from you all. My daughter just turned 3 a few months

ago and has had systemic JRA for a year now. She became ill right

around her 2nd birthday with these unexplained daily fevers that

would spike in the evening to as high at 105.5. She was also in

general pain and her hips hurt. She would wake up in the morning

looking and feeling ok but by the afternoon she was covered in hives

from head to toe and the Tylenol or Motrin would take hours to work

and then wear off sooner than it should. The doctors kept telling us

it was a virus but as the months passed and she stopped playing or

moving and eventually stopped eating and drinking and lost weight

they put her in the hospital and tested her for every thing you can

imagine. They could not find anything and every doctor kept

referring us to another doctor because no on had answers. I kept

asking the rheum if it was arthritis because her hips hurt so bad and

her right middle finger had become swollen but he said not because

the hips showed no swelling and the finger he thought was only tissue

swelling. They put her on a 10 day dose of steroids after all the

tests were negative and she did better and started eating and

drinking again so we went home.

>

> After about 2 weeks at home she stopped eating and drinking again

and was in so much pain it was horrible and her fevers were horribly

scary. They hospitalized her again and this time did more involved

tests such as MRI's, CT scans, bone scans and eventually a bone

marrow tap. They did find she had aspiration pneumonia as well as a

slightly swollen liver and spleen but nothing too horrible. They put

her on an antihistamine for the hives and sent us home. After a few

more weeks her right knee swelled up and I took her to the rheum and

he said that with that knee now involved he would hesitantly give her

the diagnosis of systemic JRA and started her on daily steroids. I

hated the steroids as you all know caused her to be cranky but she

gained so much weight so fast and was always hungry. I started her

on fish oil and it helped so we weaned the steroids down over 5

months. She was doing wonderfully and had not had any swelling,

pain, hives, fevers or anything for 4 months then it all started

again.

>

> She is having the horrible hives daily but the fever is not a

regular occurance as it once was and if it does come it is easily

treatable. The problem is she has both ankles, one knee, 3 fingers

and who knows what other joints involved now. I have been working

with a naturopathic/homeopathic doctor for 5 weeks now and had her on

a gluten free diet for 6 weeks now and she just keeps getting worse.

She even had a nodule on her ankle that I was able to get to go away

with a homepathic cream. The natural doc says it will take time to

heal her but it could get worse before it gets better and not to

start her on the drugs. I want that to be true but she is losing

hair now because of laying down so much and won't move around much at

all. On top of it all she has Down syndrome so she is already behind

and it is much worse now. She won't even try and walk or crawl. I

feel like I have to start her on the methatrexate and steroids but am

so scared of the long term and short term affects of them.

>

> I want to hear how your kids have faired on these drugs both short

term and after years of either being on them or years after getting

off from them. Is it better to ride out the natural treatment or do

the drugs which in my opinion is poison? How soon did the mtx work

for your child? How many of your kids went into the remission that

the doc talks about from it? Did their hair fall out? Did they get

the mouth sores and how did you treat it? What other side effects

happened?

>

> Thank you so much

>

> Kim

>

> Stay informed, get connected and more with AOL on your phone.

>

June 7, 2008

Thank you all so much for your kind and very informative replies. It helps to hear others stories of how things have gone for their child. The doctor made it seem like we would do 6 months to a year of the MTX and then never have to do it again but it seems like most of your children are on it or something else. I was hoping to have her be a lucky one and go into remission and never see this disease again but it looks like that is not very common or at least as common as the doctor told me it is.

I'm hoping to have Kairi do well on the meds if I start them and at least be able to play and laugh again. I had never met a family with a child who had JRA so again it is great to hear similar stories to know you are not alone in your desperation to help your child and your pain in watching them suffer.

Thank you all againKimOn Thu, Jun 5, 2008 at 5:10 AM, slevindoski <slevindoski@...> wrote: