How did you find out? Symptoms of JRA

[happy_acres]

My daughter was a little over two when she started limping, We had just moved and assumed she had fallen or tripped over a box or a stair. The limp was bad enough to seek medical care. Initially the doctor sent us for x-rays and declared, even though there was no obvious break, there "might be" a small fracture and so my daughter's leg was casted. When the cast came off a few weeks later, the swelling was worse and the limp remained. It was then that I heard those horrible words; "She might have an inflammotory disease". What th heck does that mean? "Possibility of arthritis". ARTHRITIS?! Kids don't get that! But an MRI and some blood work did in fact determine my 2 year old daughter had Juvenile Rheumatoid Arthritis.

How did you get a diagnosis?

If you suspect JRA, but don't have a diagnosis yet, what to watch for; swelling that won't go away, limps, trouble holding things, hot spots on joints, general crankiness/pain. If you report these symptoms to a doctor and he can't find anything wrong... an MRI and bloodwork will either rule out, or confirm, JRA.

[Vandy77]

My daughter at first was dx with Hypothyroidism and was being treated for that when the doctor discovered that she had JRA.  Because of her hypothyroidism she had lost nearly half her body weight and I noticed that she had water on her joints and they were hot to the touch.  She also complained that her neck hurt to look up and refused to play.  She was 3 at the time, and that scared me.  A 3 yr old child not playing but would curl up on the couch and watch tv all day.  Thankfully we had a great doctor at the time and he sent us to a Rheutamatologist in LA.

[happy_acres]

what kind of symptoms does she suffer from today? what joints are affected? how often does she flare?

[Vandy77]

Actually since we have been using her meds she hasn't had flare-ups in over 4 yrs.  But she used to not be able to move much.  her neck was very stiff and she couldn't look up, she even had a hard time writing her own name.  But with physical therapy twice a week and water arobics twice aweek with her meds she now has full movement in her neck and we are now working on regaining her strength.

[motherof4and2]

Well, my daughter started limping and also would walk with her leg straight and not bending it. It swelled so bad and got very hot. We haven't gotton the diagnoses yet but the doctor says he is sure that is what she has. Her blood work tests negative for it but he said in the starting stages of it that isn't uncommon. We are suppose to go back on Oct.1st and I am not sure what he will say then.

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[Deetipton]

We've had the classic symptoms start a little at a time. The limping while not bending the knee is what made her doctor order the RA labs. By that time we'd already had her hand x-rayed for nodules, and then we had her hips, legs & feet x-rayed. No formal diagnosis yet, but I'm certain we'll have it soon.

[Melissa823]

Hi, I'm new to the group. I'm 25 years old and I personally have JRA..and I found out because I have iritis in my eyes. I had some problems with my ankle as a child, but the iritis/uveitis continues to be a problem today, in fact, moreso than ever. One day I went to school and came home and my eye was just blurry and itchy all day. By the time I had symptoms, the disease had progressed and I had to have surgery. God has protected my vision, but in many cases, this is the only sign of JRA. My specific diagnosis is pauciarticular jra which means - few joints.

[shannons_3]

My son right before his 11th birthday started complaining of sharp pains through his legs , especially at night and running real high fever at night then he would not eat and started loosing weight and loosing his energy, they tested him for bone cancer, lukemia, lupus, etc. finally after being in 3 different hospitals he was diagnosed by a rheumatologist. It took four weeks to diagnose him and that was 5 years ago.

[lmds99]

When my daughter was 2, she started complaining about her hips that summer and we had to carry her everywhere. She also was running temps and had a rash that we thought was 5th disease.It eventually got better and then flared up again that fall, so we ended up in the ER. With great doctors, and a great ped, who happened to call the Ped. Rheumatologist in Iowa City on the right day and they had a cancellation. She was so sick when we got there that they admitted her the next morning for 4 days. After being tested for everything under the sun, she was diagnosed with Systemic Onset JRA. She had fluid on her hip, and a slightly enlarged spleen (systemic onset can involve your organs). After almost 3 years on meds, she is now off of all meds and is a healthy 7 year old. We just pray that she has no further flare ups. We were released from the ped rheumatologist almost a year ago.

[ediblebaby]

2 months ago my mother gave my toddler a new pair of shoes. I saw she was limping and thought they didn't fit her right. Then I saw the limp with her old shoes too. After waiting a week, assuming she had twisted it, we went to the Dr., who said to wait another week--she might be taking longer to heal since she wasn't staying off of it. After that week went by we had xrays and blood work, showing nothing unusual (except for borderline anemia). So we saw an orthopedic specialist who, guess what, wanted to wait another week. During this week, my daughter took a big turn for the worse. She became increasingly clingy, cranky and stopped walking almost entirely. Then came the MRI and repeat bloodwork. She remained a mystery, and finally in week 7, we saw a rheumatologist who saw it for what it was, and it was not only her ankle, but also her knee, wrist and elbow. After the DX, many of our drs said they suspected this, but none of them told us! While, of course, I would have preferred a sprained ankle, I was so relieved to know what to fight, and to know that it was treatable. This is the beginning of our journey, so I'm not sure what to expect. I just hope that people are a little more upfront from now on.

[sclotdebro]

My daughter was just a few weeks short of her second birthday.  My husband noticed for several months that she walked on her tip-toes and had a slight limp.  I didn't see it.  Then it got worse and I noticed it.  Over a few days, her ankle started swelling.  We took her to the pediatrician who dismissed it as an ankle sprain, saying kids her age are so active that they sometimes sprain their ankles without showing any pain when it happens.  A week later, she was worse - unable to walk. So I took her in again.  He said it was likely due to her overusing the other leg to compensate.  Of course when we got to the pediatrician, she was much more active than she had been at home.  That evening, she started vomiting and ran a 104 fever.  She became rigid and couldn't bend her knees or elbows.  She didn't want to be held or carried, and didn't want to be moved.  We rushed her to the ER.  They quarantined us thinking she had some weird disease that might infect others.  Four days later, after MRIs, bone scans, xrays, blood tests, etc., we were told it looked like possible juvenile arthritis, but we'd have to see a pediatric rheumatologist for a diagnosis.   We had to wait a few months to see the pediatric rheumatologist, who concluded it was arthritis.

We've had no major issues until the past 4-6 weeks where she's started having more and more stiffness and pain.  She started vomiting and we took her to the pediatrician who said she has a gastrointestinal illness.  But along with it has come extremely swollen joints with severe pain.  My daughter hasn't walked in two days.  The stomach illness started a week ago.  The pediatrician thinks the stomach illness caused the arthritis to flare.  It was already showing signs of not responding to the medication, so her rheumatologist suggested upping the methotrexate (which started last week).  It is so difficult to see my daughter in such pain and so little I can do about it but try to make her as comfortable as possible.  I have a call into the doctor's office about her arthritis and I'm waiting for a response on what to do next.  Since this is the first "flare" she's had in two years since the diagnosis, I don't know if this needs to be treated differently or if it will subside once the stomach illness dissipates.