Who are you/your family?

What is your child's diagnosis?  How is your child currently doing?

When was your child diagnosed?  How long did it take?

What mediacations is your child currently taking?  Previous meds?

What therapies or alternatives have you tried?

Does your child have any other diagnosis?

Advice for newly diagnosed kids and their families?

Anything else you want to add?

Thanks!

Karen and Alex, 6, poly (04/09)

Yikes I just typed everything out and my computer ate it...I'll try again later.

My DD is still undiagnosed, but we truly believe she has PR (palindromic rheumatism). She has minor stiffness in her right hip joint and right outer thigh muscle, slightly less mobility in her lower back, and microinflammation in her right knee when flaring. She is perfectly healthy otherwise. She did have a severe milk allergy as a baby and tons of ear infections.

Today, she woke very stiff, after a  12 hour nights rest, but got better over the day. Yesterday was normal, the day before she was in such agony that she missed fun VBS. It goes day to day really.

Only Ibuprofen helps; allergic to Naproxen, Neurontin and Tylenol 3 did nothing.

She is currently doing PT, seems to be helpful.

We tried to see if some foods affected her, doesn't seem so. She was checked for Celiac, negative. Someone mentioned Papaya enzyme for leg pains, and I am not sure how effective that was, but we d/c them. Warm baths used to help, now only cold baths help, and icing her joints. She also likes the IcyHot.

I don't have much advice for anyone, as we still struggle to get a diagnosis and see if this is turning JRA or not. Or she could be the small minority that it just goes away on its own. I read a story where a mother had PR for 10 yrs, and then was pain free for 13 yrs at the time of the article. I pray hers goes away before that, but it does give some hope that just because it lasts for 2-3 yrs doesn't mean that it will last for life. Kymberli

I am Kim.  My DD, Briar was diagnosed about 6 months ago or so.  She is 3.  She has polyarticulal and is ANA+.  So far she has only had corticosteroid injections.  They have worked so far.  Her eyes were fine.  She is our only child.  I believe that this runs in our family.  My Great grandmother was in a wheelchair at the age of seventeen do to arthritis, she did live a long life and had children.  My father has adult rheumatoid arthritis also. 

Have you tried giving your daughter magnesium for the muscle pains?  This should help a little. 

What is your child's diagnosis?  How is your child currently doing? Poly ANA neg. age 6 , I'd have to say no change

When was your child diagnosed?  How long did it take? Dx in 4/09 after 2nd visit. If we go back to her original knee pain it is over 1 yr now.

What medications is your child currently taking?  Previous meds? MTX 10mg weekly,folic acid 800 mcg and motrin

What therapies or alternatives have you tried? None No therapy needed at this point. She receives O.T. for fine Motor Delay , so this helps with inflammation in her fingers.

Does your child have any other diagnosis? Yes she has been dx with PDD-NOS VS ADD, Clinical anxiety since 2008

Advice for newly diagnosed kids and their families? Educate yourselves with info regarding your childs symptoms and or diagnosis. Educate those who will will be involved in your childs everyday life ( family, teachers, caregivers,friends)

Anything else you want to add? Take things one day at a time, try no to look too far ahead. Take time for yourself so you can have a mental break.

Karen, an ‘older mom’, married to a great Daddy…who formed our family thru international adoption.  Both my kids were adopted from Russia as infants.  We basically have no family history for them…which makes this tough.  My daughter just turned 8 this week and will be entering 3^rd grade later this month…she is a joy even though she has ADHD.  Alex just turned 6 in July and is repeating Kindergarten (he ‘had’ to start last year due to having an IEP…the ‘plan’ was to wait until this year to start because he is so young.) 

What is your child's diagnosis?  How is your child currently doing?

He has poly in his toes, right knee, both hips, both shoulders and both elbows.  He is also ANA+.  He really has only made minor progress...so far.

When was your child diagnosed?  How long did it take?

He was diagnosed in April of this year at age 5…we had a very fast road to final diagnosis.  March 12^th we noticed the swollen knee (again) and saw the pediatrician and the pediatric orthopedic surgeon the next day.  We were referred to the rheumy and saw him within two weeks.  Preliminary diagnosis was made then and confirmed five weeks later.  However I believe he has been suffering with this for about two years…we just didn’t realize it.

What medication(s) is your child currently taking?  Previous meds?

He is currently taking naproxen, folic acid and getting methotrexate injections weekly.  We will be adding weekly Enbrel injections this week, hopefully.  We were supposed to start on July 27^th but have had insurance and pharmacy issues…and then my daughter was diagnosed with strep on Sunday…he is fine so far...so we will probably start tomorrow night.

What therapies or alternatives have you tried?

Nothing specific to JIA…but have used other therapies and alternatives for his other struggles and we are willing to do that for the JIA at some point in the future.

Does your child have any other diagnosis?

Yes, a few…he has an eye condition called Nystagmus which typically of symptom of vision loss associated with other conditions.  He has low vision in one eye and not so great vision in the other.  He is having a test done at the end of this month which should give us the answers…whether we want them or not...we are looking at either Congenital Stationary Night Blindness or Incomplete Achromatopsia.  He has sensory processing disorder and developmental delays…although I am questioning if these are accurate or if it is how the pain from the JIA and the JIA itself affected him.  He also displays ADHD –like behaviors…again I wonder if this is JIA related.  And yes I am lucky enough to have two kids and my hubby who all display (or have) ADHD! 

Advice for newly diagnosed kids and their families?

Research, research, research…then find the support of been there done that families…like here.

Anything else you want to add?

Not right now…other than thanks to everyone who participates here.

What is your child's diagnosis?
Psoriatic Arthritis– dianosis is due to psoriasis in the family and digits initially involved (fingers and toes), but no “testing”. Lila's initial flare started slowly in her knees (both, but right was worse), then added a thumb and two toes (they swelled to enormous proportions seemingly overnight right after her initial diagnosis, which basically confirmed it).  Since then she’s had some pinky finger involvement (almost always when she’s eaten wheat the day before) and an ankle that sometime swells. Oh, and she’s ANA negative.

How is your child currently doing?
Very good. No meds for over 3 years, no pain, no range of motion issues. She has an ankle that has some residual swelling which I keep an eye on, but otherwise no symptoms. She’s still small and very slim, which we’ve been told is common and not a problem.

When was your child diagnosed? 
18 months old

How long did it take?
About 5 minutes with her pediatrician. We were “lucky” in that she was "text-book" and our pediatrician had done some work on JRA as an intern. Lila had been stiff in the mornings since she started walking at 1 year old (we didn’t know that wasn’t normal). Then one morning, at about 18 months old, she work up and couldn’t walk without screaming in pain.  Her knees were swollen and red and her leg muscles had contracted from walking with bent knees to avoid the pain (she was our first kid and seemed like an alien in many ways, so we had an idea that things were not right, but didn’t have anything to compare with). We took her to the doc and, seriously, within 5 minutes he diagnosed her with JRA.

What medications is your child currently taking? 
None

Previous meds?
Ibuprofen (basically only effect was a tummy ache), naprosyn (worked great, but after 1.5 years of heavy daily doses she ended up with lots of bruises and photofacial sensitivity aka little scabs on her face, that kids often get from naprosyn), tolectin (another NSAID) and 2 steroid injections in her ankle (in the hospital under sedation).  She was prescribed MTX, but improved enough on a gluten-free diet that her doctor decided she didn’t need it.

What therapies or alternatives have you tried?
Ummm, most of them?  Cranial sacral, acupuncture with some traditional Chinese practices and magnets, naturopathy, homeopathy, energetic clearings, gluten-free diet, other diet stuff (based on food allergy testing), good ol’ physical therapy, supplements (like fish oil and probiotics), and I’m sure some others that I can’t remember.  Right now we’re seeing an alternative doc who combines a bunch of them and it appears to be working (at least Lila’s not having any symptoms and I’ll never know how it would be going if we were not seeing this doc).

Does your child have any other diagnosis?
Nope (she says knocking on wood).

Advice for newly diagnosed kids and their families?
- It will all be OK and you will feel better than you do right now. And so will your kid!
- Don’t be hard on yourself, it doesn’t help anyone, especially you and your child.
- Listen to your heart. If there’s something that seems interesting (and doesn’t hurt), give it a try.  If you need to do a bunch of research to feel comfortable, do it.  If you're uncomfortable with something at the doctor's office, check it out in any way you can (you know your kid better than most anyone else).
- Take notes...it seems like you'll never forget how this symptom was or what happened in that appointment, but after a few years it all gets a bit fuzzy. If you have to change docs/insurance or see new specialists, it's really helpful to have it ALL written down (especially since it can be a bit emotional during those doc visits AND you need to take care of the kids).  And if you also write down observations (of good and bad times) you may be able to see patterns that can help you manage your child's disease.
- Take advantage of this board, there’s lots of great info and families here to learn from.

What is your child's diagnosis?  How is your child currently doing? Kaylee came down with symptoms Feb 09 and was diagnosed with poly..in March 09. She has it in both knees, ankles, and 4 fingers on her right hand. Still flaring.

When was your child diagnosed?  How long did it take? Getting diagnosed took about a month or two, not long, but treatment seems very slow, nothing is helping too much.

What mediacations is your child currently taking?  Previous meds? Kaylee first tried Naprosyn for a month, did nothing, then Mobic, a litle hel but not much, did that for 2 months and then put her in a medicine only trial study for Humira. Gets biweekly injections and still take Mobic once daily at night. First Humira shot, saw huge progress but right before 3rd shot she started getting bad again and little movement and a lot of pain and stiffness. She had her 5th shot on Monday Aug. 3rd and is now on a month of oral prednisone and seems to be doing a little better.

What therapies or alternatives have you tried? Tried PT a few times, Kaylee resists alot because of the pain. Going to get her in the pool more and try the exercise in there. Want to try a fish oil supplement but don't know how much to give her, also heard black chery extract is good too but don;t know how much of that to give or where to get it from.

Does your child have any other diagnosis? No, she is healthy otherwise.

Advice for newly diagnosed kids and their families? This forum is a great support, the book from the Arthritis Foundation- Raising a Child with Arthritis is a good source of info, scan the web but be careful because some of the info out there on JRA is very scary. Try to stay positive even though most of the time it is really hard to.

Anything else you want to add? Never had I ever heard of JRA before Kaylee came down with it. These last several months of my life have been hell watching my beautfiul little girl not be able to do the things she loves to do and being in pain all the time.  I do hope that we find the right combination of things to cure her condition and take the pain away. I refuse to let this beat us and take away Kaylee's right to have a healthy pain free normal life.

Who are you/your family?  My name is Laura (Meg).  I have hubby and two daughters. Anna and Sarah

What is your child's diagnosis?  How is your child currently doing? Anna my youngest (age 5) was diagnosed with JRA - poly when she was just shy of 2 years old.  She is currently suffering from flares, but she is a trooper.  Effects, toes, wrists, knees, ankles, hips and elbows - sometimes shoulder and neck, but that seems ok right now.

When was your child diagnosed?  How long did it take? Diagnosis was not too long - despite fact we had biopsies done etc on her knee. 

What mediacations is your child currently taking?  Previous meds? Anna started on naproxen which did not good.  She had 13 steroid joint injections and began methotrexate and folic acid.  Enbryl was added fairly quickly to get her under control.  She was on enbryl and metx for about 2 years with great results, then flairs started.  Enbryl stopped this Spring and humira started (not seeing great improvement with humira at moment...)

What therapies or alternatives have you tried? We do physical therapy and exercises with her at home to keep her muscles strong andb flexible.  Alternatives - we watch her diet a bit - but she is tiny so if she will eat it - we give it to her.

Does your child have any other diagnosis? No.

Advice for newly diagnosed kids and their families? Don't let this disease limit your children and don't stop them from trying new things.  No matter how young, they can manage their pain tolerance better than we can.  We let Anna be as active as she wants - even through flairs.  We don't let the disease define her.  Remain strong and positive - this is a day to day disease.  it takes patience, trust in doctors and caregivers - and faith it will get better. 

Anything else you want to add?

My husband and I have 5 girls all grown and living out on their own with the exception of our youngest who is 12 now and she is the one with JIA. 

What is your child's diagnosis?  How is your child currently doing?

My daughters diagnosis (made 3 years ago) has recently changed from pauci to extended pauci, she started with two involved joints (right knee and right elbow) and now has six joints involved.  We also have a complication that came up recently with a thyroid test which is showing that she has hypothyroidism.  We are waiting to see the specialist for this now.  Her Rheumatologist says that they can be connected since they are both auto immune related.  I'm feeling a tad overwelmed with this diagnosis, do I worry about other auto immune issues now?  Is she at more of a risk?  I kind of feel like I'm back at the beginning with all of this!

When was your child diagnosed?  How long did it take?

She was diagnosed 3 years ago.  We were very lucky that we have a wonderful doctor and  nurse, they were right on top of everything!  They both thought it was JIA early on and didn't wait to get us to the Rheumatologist, we were in within 3 weeks and got her diagnosis. From some of the stories I've heard we were very blessed!

What mediacations is your child currently taking?  Previous meds?

Colleen along with the problems above also has a liver issue so they have had to be very careful with her medications.  She has been on naproxen when she first received her diagnosis.  That wasn't working so we went to joint injections and that worked well for about 9 months.  Since then she has been on Sulfasalazine and Meloxicam along with occasional joint injections.  Recently more joints are involed (both ankles, both knees and both elbows)  So they are looking at a med change but need to wait until after she is seen about the thyroid issue. (I guess it can also cause joint pain)

What therapies or alternatives have you tried?

Just what is listed above and then she swims 4-5 days a week and really that seems to give her the biggest relief!

Does your child have any other diagnosis?

Fatty Liver  and Hypothyroidism

Advice for newly diagnosed kids and their families?
This is a wonderful outlet and there are a lot of good people here when you need help or support. I was online more when we first found out but I continue to check in occasionally or when I need some extra help or support. Like now.  Don't panic, encourage you kids to do what they can and keep as active as possible.

Anything else you want to add?

Look into the Arthritis Camp for kids with arthritis and other diagnosis's (the camp also includes families).  Meeting other families and my daughter being able to meet other kids has helped all of us. 

Karen

What is your child's diagnosis?  How is your child currently doing?  Laura, 13, has a working diagnosis of psoriatic arthritis.  Having done a bunch of research, I think it's more like spondyloarthropathy, but we'll see.  How is she doing?  Not so great most days ... she has alot of fatigue and general achiness, the pain plays musical joints, and she's been adding new painful areas.  She does have some good days.

When was your child diagnosed?  How long did it take?  She was diagnosed in December of last year, but has been dealing with pain since she was nine.  I really started pushing with our pediatrician in September of last year.

What mediacations is your child currently taking?  Previous meds?  Right now Laura's regimen includes sulfasalazine (two pills twice a day), hydroxycholorquine (one pill at bedtime), Voltaren (prn), and Lidoderm patches (prn). 

What therapies or alternatives have you tried?  Some physical therapy, and I've been researching anti-inflammatory foods.

Does your child have any other diagnosis? no

Advice for newly diagnosed kids and their families?  Reserach and advocate for your child! 

Who are you/your family?

My name is Jennifer, a mother of two children, my boy that is 4 and a little girl that is going on 3. My boy is the one that has POLY.

What is your child's diagnosis?  How is your child currently doing?

My son is diagnosed with severe poly JIA, and eosinofilic fasciitis. My son sprained his ankle in March of this year and that is when everything started to kick in. He did have bouts of pain when he was littler that disappeared and then returned again here and there. Then after he sprained his ankle I thought somebody wasn’t catching a fracture or break. Finally the doctor did some blood work. When I went in for the appointment for the results he said he had a possible connective tissue disease. I was totally shocked that my son was as bad as he was. He has arthritis in all of the joints in his fingers, both wrists, both elbows, both knees, both ankles and also in all of his toes. By the time I went for his second visit his fingers were starting to get contractures. I felt bad because the only thing that I noticed was his pain in one of his ankles. I never realized that his hands were affected worse than anything else. He could not make a fist with either hand. The rheumy said that he has probably had it for several months before the actual diagnosis based on the severity of his joints.

When was your child diagnosed?  How long did it take?

My son was diagnosed this past June. It took two months to get into the specialist. Then we had an instant diagnosis of JIA. The next visit I found out he had another immunodeficiency disease and the doc did an MRI. The next visit was Poly overlapped with fasciitis.  

What medications is your child currently taking?  Previous meds?

My boy is on Prevacid daily, MTX injection once a week, folic acid daily, Enbrel injection once a week, prednisolone daily, and has naproxen for pain as needed. At first it was only the naproxen for two months.

What therapies or alternatives have you tried?

My son has been going to PT/OT since the first visit. I have not tried any other alternatives thus far. I do try warm baths on the bad days.

Does your child have any other diagnosis?

Yes. He has an IGA deficiency which is another immunodeficiency disease. After much research I found out that it can cause JIA.

Advice for newly diagnosed kids and their families?

It takes several visits to start to get things under control and to start feeling better. Try to remember that not all side effects that are associated with medicines will happen to everyone that takes it. It is better to try something and see if it works well so you don’t end up with joint damage. As all good parents, you will worry no matter what it is only natural to do so.

Anything else you want to add?

My little guy is finally starting to be a happy boy again after 3 months of trying to figure out the right meds. It is nice to finally see my happy boy again after so long of a time of him not being happy for days and nights on end.

My husband and I have 3 children - ages 13, 11 and 2 (almost 3).

What is your child's diagnosis?  How is your child currently doing?

Our 11 yr old son was dx with severe poly. JRA.  He is currently in a flare.. I'm nervous to see how long it will take for him to come out of this one.

When was your child diagnosed?  How long did it take?

Our son was dx in Feb. 2009. It took 2 YEARS to actually get a dx -- as soon as he saw the ped. rheum. doc, she dx him immediately. We had a similiar prob. like others here... his blood work "normal" but obvious signs setting that aside. I've since learned, that most kids with poly. JRA often have normal bloodwork..

He started on methx. in Feb 2009 and then BOOM less than 4 weeks later he went into an intense flare. They started the normal....low dose of prednisone. When that didn't work, they did 3 days of Solu-Medrol/ 1 gram per day..that didn't work. They talked about admitting him b/c by this point he had kidney inflamation and was in a wheelchair. However, doc knew that would be really hard on me (but I could manage) b/c my husband was deployed and not due to come home til June. So, she kept him on low dose of prednisone and added Enbrel..... 7 weeks later he was able to walk again!

What mediacations is your child currently taking?  Previous meds?

He is on Methx, Enbrel and celebrex. Along with asthma, reflux and ADHD meds.. Let me tell you....JRA and ADHD mix about as good as oil and water ;-)

What therapies or alternatives have you tried?

He was suppose to get into aqua therapy....but can't b/c 1) either facilities within 75 miles don't treat kids,or don't get in the pool with kids, or (can you believe this one!) EXPECT JRA kids to get in & out of pool with no assistance...now why would we (or anyone else) be there if my son could do that???  2) the pool temp is way to cold....around here most facilities keep temp at 82 -85 F 3) we will in the beautiful state of Florida and most afternoonsthere are thunderstorms, especially during hurricane season (which is now)...and if there's sign of lightining, the pool is closed.

He gets relief from taking hot showers/baths.

Does your child have any other diagnosis?

Asthma, GERD (reflux), and ADHD

Advice for newly diagnosed kids and their families?

Listen to your gut feeling. Don't let "others" keep you from participating in daily activities or taking vacations. Be creative, your child doesn't have to hand over the keys to life the day he/she is DX...sometimes you just have to do things a little differently!

Thanks for reading!

Tiffany

& Mark age 11, poly JRA

Barb