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anyone have a child with JUVENILE RHEUMATOID ARTHRITIS????
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JMomma1 posted:
hello, my son was diagnosed on august 31- two days before his fourth birthday. it all started the week before. he got sick with a fever and sore throat. less than a week later his knees swelled up so big it was scary. his wrists were also swollen. he also had absolutely no appetite. long story short after a few dr visits he ordered some blookwork and his ra levels were elevated along with testing done regarding inflamation and that was extremely high. HE COULDNT WALK. i was freaking out and carrying him everywhere, but since friday evening of the fourth he seems much better. he is walking and eating alot too. whats with this?? is there "flare-ups with good days and bad days? just wondering if this is normal.... also we dont think his sickness started this. thinking back im pretty sure this has been going on for some time. i think the sickness made him have a flare-up. the day before his joints swelled up he had been complaining his bones hurt and his body hurt. he always cried out when getting dressed, putting him in and out of his carseat, in and out the bath, putting on shoes, when family and or friends hug him.... the list goes on. i always thought he was being a brat- now i think he was hurting. he has a hard time sleeping. lots of moving and whining in his sleep. i thought he was a loud sleeper. i dont know im mad i didnt catch it an the only time he complained of pain was when his knees swelled. do u think he was used to the pain and never thought to say something?? also he ALWAYS walked real stiff looking when he gets up each morning. i just thought he wasnt a morning person. that it takes time for him to warm-up. and when he gets out of the car his knees look kinda bent like he is squatting and he cant walk as fast as normal. he cant just get out of the car and go.. i feel horrible just now having this epiphany(sp?). and when we told the fam, they were like- i knew he walked weird! in fact he went out of state with his dad to visit family and his great granmommy who hasnt seen him in 3 yrs said he walks funny.... hmm. now i thought i had a reason for that. when he was a baby he had torticollus(sp?) where one side of the neck muscles is really tight and it make the head tilt to one side. he actually learned how to walk at 9mos, and had this squat walk i guess to overcompinsate for the tilt in his neck and i did the physical therapy on him and corrected that shortly after he started walking. UUUHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!! i feel horrible!!!!!!!!!!! this jra mightve just came out of nowhere, but i have a gut feeling that it has been damn near life long or started his first yr or two. is there anyway to know when this first occurred??? anyone else going through this or know someone with a child going through this??? im baffled and scared, worried, etc. will my son be able to have a normal life???? please i will be thankful for any insights. please dont bash me for " just thinking it was this, just thinking it was that" im so mad i didnt FIGURE IT OUT THAT SOMETHING WAS WRONG WITH MY SON!!!!! im going t bed now since im crying and cant see the screen. please someone help me, please............
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amy62528 responded:
Hi JMomma, I am so sorry to hear that your son has JRA. I do not have a child with RA but I wanted to let you know that this is NOT your fault. I know you probably feel like you should've caught it sooner but you can't dwell on what if's, only look toward the future. I do have two children of my own so I can only imagine what you are going through. I have seen other people post on here that have children with JRA so hopefully someone can give you some insight as to what to expect and maybe some tricks as to help relieve your son's pain. If you haven't yet, i would seek a rheumatologist that has experience with JRA and hopefully they will be able to help. Good luck and I wish you and your son all the best!
 
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ImAJRAwarrior responded:
I can tell you right now.. your son will def be able to have a normal life. My name is Ciara, and i was diagnosed right after turning 5, Im now 15 and i have been in remission for 3 years. Getting it at a young age like your son, more than likely he will grow out of it. Over the years i got a series of injections in my left ankle and both knees ( where i had my arthritis) and then ejected the fluid. Then i started to take a medicine just one pill everyday. (can't remember the name) and when i went back to the doctor they said that i was completely free of fluid. And ever since then i've been in remission. Though part of my ankle bones are fused together and i did have a lot of pain when i ran, jumped, etc. thats the only think that happend.
your son will be just fine.
God Bless.
 
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Byroney_WebMD_Staff responded:
Dear JMomma1,

I just wanted to add to the support and encouragement Amy62528 and ImAJRAWarrior offered. I know we have other members who have had JRA and are grown now, or have children with JRA and they may be able to pop in and offer some additional support.

I have an article on Juvenile Arthritis that you might find helpful, too. Also check out RAtv and the interview with a mom who has RA, and one of her four kids Has JRA .

Best wishes,

Byroney
 
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daisymae3010 replied to Byroney_WebMD_Staff's response:
Hi JMomma1,
I know how you feel. I have a daughter who will be 2 1/2 years old in October. She was finally diagnosed with JRA about a year ago. She was a late walker around 16 to 18 months she finally was taking steps on her own. My daughter then slowly within a month started cruising again and then crawling then would just sit there. Not everyday was the same it seemed to come and go. At first I thought she was being stubern and could get to places faster if she crawled. Then I noticed when I would take her out of her carseat or highchair she would cry, or when I would change her diaper. I would bend on leg it would be fine the other she would cringe. We brought her to the ER they took x/rays said everthing looked good. But could not figure out what was going on. So after more test they figured it was arthitis maybe caused by lymes disease?? Later on they said there was no medical proof it was lymes because her rhematoid factor was like 110 and tops for her body was 120 it would have set that test to a positve anyway. But anyway we were sent to a pediatric rhumatoid arthitis specailist and he started her on naproxen and she was on the for 3 months but then she was put on methatrexate and scheduled physical therapy. It really helped buy last christmas eve she was walking on her own again She has since been just taking the methotrexate and since july of this year she is in remission. I cant slow my daughter down now she is always running every where she goes. I'am still scaryed that she might end up back to where we started out from but all I can do Is have HOPE. I still feel like her pain is all my fault, that I did something wrong when I was pregnant. But I did my best to eat the healthyest and everything else. I come from a very small town of maybe 2,000 so I know noone in my shoes. I felt so alone. So if you need someone to talk feel free too. My daughter has polyarticulair arthitis.
 
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goodhairday responded:
Jmomma,
My friend Art had JRA and told me his Mom put him to sleep in her arms, but he too out grew it and is in excellent health.
Flares as we call them are sporadic and some joints stay swollen all the time, joints can hurt, and also bones can hurt too, without rhyme or reason. The swelling and pain can change from hour to hour. This is my experience as an adult with RA. My RA is under complete control using diet and supplements, and an occasional Aleve. It is always food or stress that causes a problem, but my body now heals quickly; a day or two is all it takes.
Some suggestions that are worth trying - Try arnica cream by Borion found in the health food store, it takes down swelling and relieves pain, it reversed the curling in my toes.
takes away the pain an selling when I get swelling of the knees. Put it behind the knees too. Arnica OIl is made by Now and can be massaged all over. Order from internet.
Mahanaranyan Oil which you warm and apply is also healing. It got rid of the swelling in my neck and the pain and swelling was documented with X-rays as bone spurs. It comes from India. Look up NAET and contact the woman who developed it. Her name has many syllables and her office is in CA. Let her office refer you to someone who can test your child for food and chemicals that may be a problem. NAET can correct and reverse food and chemical sensitivities and tell if he has yeast or parasites. Look up Leaky Gut. It explains the connection of yeast to autoimmune. And a friend of mine was cured of severe Lupis with Homeopathy.
Socks cause me severe pain. Too much pressure on my foot bones, even when the socks are loose, they make my feet swell. When my feet were very bad I could only wear Birkenstocks or else I could not walk. See if Uggs work. Might need orthotics. I could not walk in any of the shoes I owned. Look for shoes that can be loosened with velcro or buckles and check the feet often for swelling. Light clothing like fleece and down if its cold. The WEIGHT of the clothes is a problem. No heavy blanket. I am talking like it should weigh nothing. Even goose down blanket may be too heavy.No AC that is cold. Warm seems to do better than cold. I am good at 74 degrees with AC.
A book all about arthritis is published by Alternative Health Magazine. Filled with info. Read The Autoimmune Epidemic. Author has a website and will respond to you.
I hear your cry for help.
Sharon
 
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Wesdub1 responded:
Hey there JMomma, My name is Wes,I was diagnosed with jra at 5years old. I have tried every medication out there including methotrexate..the only that put me into remission when I was 16. I am 35 now and have had complications for most of my life,there is hope. I have tried 2 of the biological meds cuz I am having problems again. Number 1, diet and exercise, something I neverfollowed thru with. Follow your rheumatologists advice, physical therapy, but I was never raised to eat right or exercise. So it has been a real difficult change for me. Because of my lack of following thru with these things, I had to have an ankle fusion, and bilateral total knee replacement. Also, An additional 10 diseases, caused by lack of vitamins(fish oils, folic acid to name a couple), and keeping up with my health. I'll get by, but my first advice, don't beat yourself up. The sooner you come to terms with it, the sooner you will be able to fight this disease with your son. I truly feel your pain as I watched my mom go thru it when I was just a kid, even though I was the one with the arthritis. There are great support groups out there for people in your same situation. My other piece of advice, don't ever let something slip by, with meds today, your son can have a perfectly healthy and active childhood, adolescence, and adulthood with proper treatment. There will be battles, but in the end, you can win the war. I wish there was more info when I was growing up. You are in my prayers, but don't ever lose hope! Wes
 
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crystalscats responded:
I have had JR/A since I was a teen. It has gone in and out over the years. It took a while for me to get diagnosed. They kept telling my mom growing pains or all in my head, doing for the attention. I don't for one minute blame my mom for it taking so long to get diagnosed. So let yourself off the hook. When we're young not expected to have arthritis, so you or the doctors are really not looking for it.

I finally went to an orthopedist who looked at me and asked if when I swell like I am now, run a low grade fever and red and swollen. I told him yes. He said then that is not growing pains. He sent me a specialist in Philly. They did blood work and came back all positive which is not the case for all. So makes even more difficult. I was in pain for years and finally someone found what it was.

Like I've said I have worked and gone through college with it. Yes, good and bad days but we can live a normal life with it even being young. I also went into remission for many years. I recently was dx with FMS and this has brought it out of remission however and made it worse the the chronic fatigue worse. But I think that having since I was a teen and not being able to deal with until 51 yrs old is not so bad.

Crystal


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