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HELLO I HAVE A FIVE YEAR OLD DIAGNOSED WITH JRA (Juvenile Rheumatoid Arthritis). I AM LOOKING FOR OTHER FAMILIES WITH CHILDREN WITH JRA. I AM HOPING FOR SOME WAYS TO HELP HER NATURALLY.<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dp_femalesling.GIF" style="border:0px solid;" title="DP Female Sling">:
 

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My husband has RA. (Though it's not JRA.. that must be so tough to deal with a child with such a debilitating illness!) He was just diagnosed in December. He is on prednisone, celebrex, and methotrexate. Right now, he is avoiding gluten, tomatoes, and potatoes, and taking lots of fish oil every day. The fish oil in particular really seems to help. I hope you can figure out something to help your little one.
 

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thanks for your support I will try fish oil if she will take it. Sorry to hear about your husband, it's hard at any age.
 

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i'm just subbing so I remember topost later. My DS has JIA and I will share what we have done once DD is settled (probably tonight)<br><br>
How many joints are affected?
 

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<div>Originally Posted by <strong>Throkmorton</strong> <a href="/community/forum/post/7024655"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">i'm just subbing so I remember topost later. My DS has JIA and I will share what we have done once DD is settled (probably tonight)<br><br>
How many joints are affected?</div>
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Thank you so much for responding. I have been hopeing some one would. She has three affected joints that the doctor is sure of. Neck ,big toe, and knee. We just found out two months ago, it has been very scary to find out. Almost all the women in my family (besides me)have some kind of auto immune diease, my grandmother died from lupus complications.<br>
I am sorry your child has jia. what does JIA stand for? I have only heard of jra. Any how would love to here more, and share stories, it can feel very lonely not knowing other families going through similar situations.<br>
Thanks again foryour response.
 

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In Canada (and most of the world), it's called Juvenille Idiopathic Arthritis (assuming the kid is negative for RF).<br>
Only in the US do doctors refer to it as JRA<br><br>
DS has 3 joints affected, his knees and a toe. We found out about 6 months ago.<br><br>
Ok, what we have done:<br>
First, i have been keeping a food and activity journal for DS. I write down what he has eaten, what he did in terms of activity and how his knees are feeling.<br>
Some kids respond to cutting out foods from the nightshade family. These are things like tomatoes, potatoes and peppers. We went off of all nightshades for 3 weeks, but it had no effect. Because it is hard to feed a picky 4YO without potatoes or spaghetti, we stopped at that point.<br>
We are currently trying to cut out all dairy. No results yet, but it's only been 10 days.<br>
We give DS fish oils and some Greens+. The Greens+ is mostly because he is picky, and likely lacks some nutrients in his diet.<br>
We see an excellent Pediatric Rheumatology team, who i love. My best advice is to take full advantage of their knowledge. Are you seeing Peds? A regular rheumatologist? Or just a regular GP right now?<br><br>
Physiotherapy has absolutely been the most helpful thing so far, in terms of keeping his joints mobile. We see a physiotherapist every 6 weeks when we travel to Vancouver Children's Hospital and do daily physio at home.<br><br>
Have you seen an opthamologist yet? DS ended up having Uveitis, which has been the most difficult part so far.<br><br>
It is scary. i am just starting to get into the groove of travelling for treatment and dealing with the hospital.
 

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I have heard that term on the internet. my daughter is rf neg.<br>
So what joints does your ds have JIA? have you found any alternitive treatments that help? does he need medication daily?<br><br>
sorry to ask so many questions but I have not had very many parents to talk to.<br><br>
My daughter is on ibuprofen, dr wanted her on mobic but Ibuprofen has been around longer, so I figured it was safer. I don' t like giving her meds but dr. led me to believe she would have long term damage with out it.( she goes to childrens hospital in seattle)<br><br>
Any how I would love to hear more of your story . thanks for your reply.
 

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I haven't found too many alternative tratments that have helped his case. All I can do, it seems, is support his system nutritionally and get him plenty of exercise. He loves swimming, and we go twice a week.<br><br>
There is someone else on this board who has been treating her DD's JIA naturally. I'm sure she will find this thread.<br><br>
DS takes Naproxen daily. The ibuprofen didn't help much, and after 9 weeks on it, he could not bend his knee at all. He will also have a joint injection in a couple weeks because the naprox. has helped, but not enough.<br><br>
There is a very real possibility of permanent damage with JIA. The entire goal of treatment is to protect the joints and keep them mobile until the child outgrows it.<br><br>
We discovered that Ds had JIA last summer when he started complaining of his leg falling asleep after a nap. To be honest, i thought he was faking to get attention because of the new baby. One day, his knee just started swelling. I took him to the doc and had a zillion tests done (he is terrified of blood tests) and when he didn't get better, they determined he had JIA. By that time, it had spread to his other knee and toe.<br>
We have been holding steady lately with less swelling, and we hope that the injections help. I'm not holding my breath though, and I do not react well to cortisone and I am afraid he will be in a similar situation.
 

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Discussion Starter #9
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<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Throkmorton</strong> <a href="/community/forum/post/7025213"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">In Canada (and most of the world), it's called Juvenille Idiopathic Arthritis (assuming the kid is negative for RF).<br>
Only in the US do doctors refer to it as JRA<br><br>
DS has 3 joints affected, his knees and a toe. We found out about 6 months ago.<br><br>
Ok, what we have done:<br>
First, i have been keeping a food and activity journal for DS. I write down what he has eaten, what he did in terms of activity and how his knees are feeling.<br>
Some kids respond to cutting out foods from the nightshade family. These are things like tomatoes, potatoes and peppers. We went off of all nightshades for 3 weeks, but it had no effect. Because it is hard to feed a picky 4YO without potatoes or spaghetti, we stopped at that point.<br>
We are currently trying to cut out all dairy. No results yet, but it's only been 10 days.<br>
We give DS fish oils and some Greens+. The Greens+ is mostly because he is picky, and likely lacks some nutrients in his diet.<br>
We see an excellent Pediatric Rheumatology team, who i love. My best advice is to take full advantage of their knowledge. Are you seeing Peds? A regular rheumatologis? Or just a regular GP right now?<br><br>
Physiotherapy has absolutely been the most helpful thing so far, in terms of keeping his joints mobile. We see a physiotherapist every 6 weeks when we travel to Vancouver Children's Hospital and do daily physio at home.<br><br>
Have you seen an opthamologist yet? DS ended up having Uveitis, which has been the most difficult part so far.<br><br>
It is scary. i am just starting to get into the groove of travelling for treatment and dealing with the hospital.</div>
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we have a pedatric rheumatologist, since its through childrens in seattle I have trusted the diagnosis. We have not tried any diet chage considering my dd is very picky, I am scared she'll starve. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> she has seen an opthomologist and is scheduled to see them again in feb.<br>
Uveitis how scary did he have it on his first optho. exam? or did it happen later? When did your ds's symptoms start? Is he on any meds? Any family history? did you vax? what did the blood tests say? was ds rf neg. was sed rate normal? just currious. my dd had completely normal blood work. SORRY for ALL the ques!!<br>
it took our ped two years before she refered dd.<br>
The hospital is hard to get use to. I hope your ds is feeling well and many<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> . Thanks for sharing your story. I hope we can stay in contact.
 

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His Uveitis was diagnosed on his first trip to Children's but it wasn't a huge shock. He had been complaining of seeing spots for a couple weeks.<br><br>
The hospital has been the hard. Because we live so far away, it's at least a 3 day trip (5 days this time)<br><br>
I know what you mean about trying to limit an already picky diet, DS went through a phase last year when he would only eat 3 things. it was frustrating.<br><br>
We have no family history of RA or anything. A bit of osteoarthritis and that's it.<br><br>
Blood tests were all normal. We have to get a few more to check for ACE levels and such, but will do that later.
 

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Discussion Starter #11
What a long drive I am sorry!<br>
What are ace inhibitors? did you vaccinate?I know a lot of people blame vac. for JIA. Just currious on your thoughts<br><br>
Yeah dd is at that point of her life where she won't eat pretty much anything.She is the pickest child I have ever met.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"><br><br>
Does DS complain of pain? My DD does sometimes but she mainly is very cranky but now that she is on her meds she seems like a different kid, acctually happy and energetic. We still have our bads days but at least now we have mainly good ones.
 

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Er, do an ACE test. Nothing to do with the inhbitors<br>
(I am very tired today. I barely make sense to myself.) He needs additional tests because some of his results were a bit abnormal in that they would expect some levels to be higher<br><br>
DS no longer complains of pain unless he has been doing a lot of walking or running. Day to day, his pain is almost nil. We have good days for the most part. good enough, in fact, that i am considering putting him in soccer in the spring.
 

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Thats great that he has very little pain.soccer would be fun.<br>
my DD is in Ballet and she does really well, she does get tired easier than the other kids.<br>
Well get some rest thanks for all your responses!
 

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My new advice is to brace yourself for the ups and downs.<br><br>
Yesterday, we had an appt with the Ped. He said DS was doing great, and may not need that joint injection after all. This morning, DS woke up with a 103 fever and knees like softballs <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy">:
 

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<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Throkmorton</strong> <a href="/community/forum/post/7046532"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My new advice is to brace yourself for the ups and downs.<br><br>
Yesterday, we had an appt with the Ped. He said DS was doing great, and may not need that joint injection after all. This morning, DS woke up with a 103 fever and knees like softballs <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy"></div>
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I am so sorry to hear that. I hope he feels better soon.
 

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my DD (19 mo) has JRA in one knee -- she has been on naproxen for 6 weeks now. however, i'm also trying every alternative treatment i can think of, because i can't stand the idea of such a little one taking medication for the long term.<br><br>
we consulted a homeopath, who is treating DD with homeopathic remedies, and are giving her an anti-inflammatory diet: no dairy, no fried foods, low sodium, low animal protein, high fruits, vegetables, nuts/seeds. we're lucky because even at her age, she seems to love these things. (oh, and she's also still breastfeeding, which i'm sure is a help).<br><br>
in addition, we're seeing an osteopath (one treatment so far).<br><br>
the end result is that the inflammation in her knee has radically diminished and she has regained an impressive amount of mobility. (the doc, who was surprised at such a quick improvement, hopes to take her off meds in another 6 weeks, and no cortisone shots.)<br><br>
this could just be due to the naproxen, but i'm inclined to think that it's the complementary treatments that are speeding up her healing.<br><br>
i hope some of this is useful, and i wish you and your daughter much strength as you cope with this. you have my utmost sympathy -- it's so difficult when your child is suffering.
 

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<div>Originally Posted by <strong>chic2chic</strong> <a href="/community/forum/post/7059692"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">my DD (19 mo) has JRA in one knee -- she has been on naproxen for 6 weeks now. however, i'm also trying every alternative treatment i can think of, because i can't stand the idea of such a little one taking medication for the long term.<br><br>
we consulted a homeopath, who is treating DD with homeopathic remedies, and are giving her an anti-inflammatory diet: no dairy, no fried foods, low sodium, low animal protein, high fruits, vegetables, nuts/seeds. we're lucky because even at her age, she seems to love these things. (oh, and she's also still breastfeeding, which i'm sure is a help).<br><br>
in addition, we're seeing an osteopath (one treatment so far).<br><br>
the end result is that the inflammation in her knee has radically diminished and she has regained an impressive amount of mobility. (the doc, who was surprised at such a quick improvement, hopes to take her off meds in another 6 weeks, and no cortisone shots.)<br><br>
this could just be due to the naproxen, but i'm inclined to think that it's the complementary treatments that are speeding up her healing.<br><br>
i hope some of this is useful, and i wish you and your daughter much strength as you cope with this. you have my utmost sympathy -- it's so difficult when your child is suffering.</div>
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Thank you so much for your response. I am sorry your daughter is going through this too. Where is your dr.? Are they a ped. rhuemotologist?<br>
It is great your daughter will be able to go off meds, that is my hope.<br><br>
What sort of treatments has the osteopath done? I am not to filimiar with osteopathy.<br><br>
Any how please let this forum be a place of support and story sharing for us and other families.<br><br>
Its awesome you are still nursing!!!! <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/winner.jpg" style="border:0px solid;" title="BFSymbol"> It helps her a lot!
 

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I am so glad that I came here and did a search!<br><br>
My ds (almost five) will be seeing a Pediatric Rheumatoid Arthritic Specialist in April.<br><br>
It is normally his knees and ankles that cause him pain.<br><br>
It started when he was learning to walk and he would try to say that his legs hurt. I thought it was growing pains. Then as he became older he could then say, "My KNEES hurt". I learned on-line that growing pains don't happen in the joints.<br><br>
He seems fine most of the time....and then the pain starts...<br><br>
~Charlene~
 

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<div>Originally Posted by <strong>JENERGY</strong> <a href="/community/forum/post/7065178"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Where is your dr.? Are they a ped. rhuemotologist?</div>
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yes, a pediatric rheumatologist in washington, d.c.<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>JENERGY</strong> <a href="/community/forum/post/7065178"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">What sort of treatments has the osteopath done? I am not to filimiar with osteopathy.</div>
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i'm not too familiar with it, either, but i'm willing to try everything, and i figure that at the least it can't hurt (this person came heavily recommended). from what i (vaguely) understand, the osteopath works with the connective tissue throughout the body using manipulation (a kind of massage, i suppose?) to promote the body's ability to heal itself, and also to help the mobility of the affected joint. our one session so far lasted an hour and a half. he manipulated DD's knees, pelvic bones, & spine. she cried at the beginning (only because she hates being touched by someone who isn't family), then fell asleep for the remaining hour (i was also holding her the whole time). we go back for another session tomorrow.<br>
i have no way of knowing if the alternative treatments are working -- but if she is successfully taken off meds and her RA goes into remission, i'll be convinced of it.<br><br>
the easiest thing to try -- and one that's definitely risk-free -- is making dietary changes. (going dairy-free takes at least two weeks to eliminate remaining dairy protein from the system). perhaps you might have an easier time convincing a 5-year-old that certain foods can make her feel better? (i also have an almost-5-yo -- i do know that it's hard, but they can be reasoned with at that age).<br><br>
anyway, best of luck to you. hang in there.
 

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P.S. i just re-read some of your earlier posts about your DD being a picky eater. i do know what that's like: my older DD hardly ate anything at one point.<br>
i guess what worked for me is to stop making her special foods in an effort to get her to eat: i would make the same meal for the whole family (about 3 or 4 different things), and if she said she didn't like any of it, i'd tell her she could wait till breakfast (or lunch or whatever the next meal was). for a few days she fussed, and then started to eat one of the things i'd set down (i.e. just the carb portion), but over a month or so, she miraculously began eating everything. this may not work with all kids (i only have experience with 2), but i have found that when mine are truly hungry, they will eat whatever is in front of them.<br>
the more research i do (even just on google), the more connections i find between autoimmune diseases and diet (esp. consumption of dairy, meat & gluten).
 
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