Juvenile Arthritis

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Possible Juvenile Arthritis - 6 year old

Jan 2015

I am hoping to find advice, information, perspectives about a possible juvenile arthritis diagnosis for my 6 year old. She has swelling in her right knee and ankle and her blood work reveals an elevated sedimentation rate and a positive ANA (autoimmune marker). She is not in any pain, but I am not sure how long she has had this inflammation. We only really noticed it because she DID have pain one night last week, which led us to the ER and a misdiagnosis of a displaced kneecap. Upon further reflection, it seems she might have also had a swollen knee this past summer.

Unfortunately, the earliest appointment we could get with a pediatric rheumatologist is in mid-April. I am taking her to the pediatric ophthalmologist in early January, because this type of arthritis has a high occurrence of eye inflammation (uveitis), and potential vision loss/blindness. On the advice of her pediatrician, we are starting her on ibuprofen 3x/day, and will re-examine her and repeat blood work in 2 weeks. I am terrified that she has undiagnosed eye damage, and am worried that this condition will get worse and lead to a progressive, untreatable, painful disease. I am also not happy about the prospect of having her on anti-inflammatories or stronger medication long term. To be clear, we still don't have a diagnosis (and probably won't until we see the rheumatologist). In the meantime, I am looking for any advice/anecdotes on alternative treatments, strategies, etc. We no longer live in the Bay Area, sadly, so I can't see specific practitioners that people might recommend. Thanks in advance.

Sad and scared mama

Two of my siblings have rheumatoid arthritis. One was diagnosed as a child, one as an adult. Not sure if you're talking about RA.

My siblings would tell you to treat immediately. Swelling is active disease, and damaging to joints. April is too far away. Much a bunch of noise with your doctor and insurance company. Send aggressive faxes. (Don't ask me why, but it seems a fax kicks medical people into gear. Fear if liability? I don't know. I just know that when I land a piece of paper in their machine, they take action.)

My sibs would also say that you'll have to get over any preference for alternative medicine pretty quickly. They would tell you that they don't have the luxury of declining pharmaceuticals that actually work and preserve their mobility.

Meanwhile, as a mom, I would say don't torture yourself about the ibuprofen. Give it to her, knowing you're helping her stay out of pain, and be glad that you can do that.

Also, as a mom friend, I would say that waiting until April for meaningful help will be hell on you, and that's another reason to make these people respond now. Sounds like a great job to assign to someone else...a partner, a grandparent, a favorite friend who can play Mother Bear agressive for you and your daughter. Sounds like yiur job is supporting your daughter, so activate your team.

And do something good for yourself. A swim. Tea with a friend. A comedy show. This is hard stuff for a parent. Self care will be very important.

Love to all. Mom of kid with a different Ortho challenge

My 14 year-old was diagnosed with juvenile idiopathic arthritis in October after having a swollen knee since May, and from my limited experience, it sounds like you're doing everything right. Because he wasn't in a lot of pain, it took a long time for us to get a Dr. to check it out. Then, we had to wait about a month for his first rheumatology appointment. In the meantime, to reduce swelling, he took Aleve, used ice, and elevated his knee. He wore a knee brace/ace bandage wrapped tightly around his knee for a few weeks so that fluid would not be able to build up in his knee. I would also get on the Dr.'s list in case there is a cancellation, so you might get in before April.

I, too, was worried about all the same things you are- long term joint damage, eye damage, stomach problems because of the anti-inflammatories. My son's eyes are fine, and the swelling in his knee is under control and doesn't seem to have caused any long term damage, even after living with an untreated swollen knee for several months. He takes prescription strength anti-inflammatory drugs, but we are hopeful that he'll go into remission and won't require them long term.

I know every case is different, and I hope everything turns out fine for your daughter.

Mom of Arthritic Kid

Hi momma,

I'm so sorry your daughter is dealing with this. You must be so worried & fearful for her future. My heart is with you.

I've got an autoimmune disease with arthritis, diagnosed three years ago. So I just want to share my perspective & hopefully give you some comfort. Mid-April must seem a long time away for an appt (and it is!), but these illnesses often take a long time to diagnose and even longer to find the right treatment. Mine took six months and 2 rheums to diagnose, and that's considered really fast! So I hope you can find ways to cope with the uncertainty, find patience, and present a confident and positive face to your daughter. Now's the time to start meditation, yoga, or something for serious stress/anxiety reduction.

I also understand how you hate the thought of giving such serious medications to your little girl. It's awful when you read all those warnings etc. But please take heart. We're blessed to live in a modern world, where brilliant scientists have developed treatments for such illnesses. HIV positive people today are blessed to have the latest antiretroviral meds, diabetics are fortunate to have better insulins, and us autoimmune folks needn't feel guilt or worry at taking our meds either. The risks are tiny tiny tiny compared with the illnesses.

In the meantime, I'd suggest...

-ask your ped if the anti inflammatory is optional for pain relief, or should be taken either way to prevent other effects

-if she's in pain beyond the Advil, ask for something else. There's alleve and prescription pain relievers that are better, and that have same or even fewer risks. Try a warm pack at night.

-while waiting for your appt, keep a daily log of her symptoms & each med/supplement taken

-while waiting, also check around that you're seeing the very top ped rheum, ideally at a research hospital.

-Look for an online support group for ped rheum patients -- get support from other moms - online support groups are my lifesaver.

-there are a few 'anti inflammatory' diets out there. None helped me, but it can't hurt to try. Potatoes, eggplant, tomatoes (night shades) are inflammatory & can be cut. Many people cut out gluten, sugar, and/or dairy. Acupuncture is often suggested. Test one change at a time to see if it helps. For me - it helped to try these things bc I felt more in control! But they didn't help a bit & now I enjoy a regular diet.

-try not to worry/project too far into the future. Take things as they come. Enjoy each day. With you by her side, your little girl can handle what life throws at her.

Xoxoxo Former arthritis, now I'm great

dear scared mama, i have ankylosing spondylitis with recurring uveitis that came on when i was 16. many people in my family have similar autoimmune conditions. i just want to reassure you that there is help and encourage you to take one thing at a time -- as much as you can, avoid worrying about future problems. the two most helpful things i've done are 1) get a complete history of autoimmune diagnoses in my family, and 2) consult with a rheumatologist that you can trust and afford to see regularly. try to coordinate care between your general doctor and the rheumatologist. the uveitis should be treated by an ophthalmologist who has experience with uveitis. there's a ton of misinformation, so be thoughtful about how much scanning of the internet you do for information. and ask your friends. you have more friends/family with these conditions than you know. lots of love. erica

Our daughter developed JRA at age 18 months, in the form of knee swelling and pain, elevated ESR. We were lucky to be treated by a Pediatric Rheumatologist at Children's Hospital, who advanced us to methotrexate orally soon after we saw little improvement on ibuprofen. The methotrexate worked wonders and our daughter stayed on it for almost 3 years. Now she's off completely, age 8, no joint issues at all. She did eventually develop uveitis in one eye, which is controlled with drops. So, our course was pretty moderate, and our daughter is perfectly healthy and happy. My experience with autoimmune diseases is that the course is pretty variable. We really saw no long term effect from daily ibuprofen for years or from methotrexate, which sounds scary, but controls the disease very well in many cases. Good luck

I am not the parent of a child with JRA, but I was diagnosed with it almost 30 years ago at the age of 15. What has worked for me more than anything else has been pharmaceuticals. Acupuncture and diet have helped really well with regulating my energy levels, but nothing has come close to meds. I have been on the biologics for the past 15 or so years (treatment for the disease changed radically when they were approved and they have been very good to me). Exercise has also played a critical role in managing my disease - if I don't get some form of it daily, I am pretty much a disaster.

In terms of uveitis, I remember getting eye tests done when I was a teenager, but I don't think anything came of it since my eyes are largely fine.

JRA success story?

One of my closest friends dealt with this with her daughter and they chose to take the path of the powerful drugs recommended. Her child changed almost overnight from a kid who wanted to be carried all the time (at age 5) and cried constantly to a happy kid. She's now a 10 yr old lovely ballet dancer and her arthritis is in remission so she doesn't even have to take anything for it.

My grandmother also had it, and 87 years later still suffers. She's has problems with depression all her adult life. Don't hold back on the drugs, scary as they may sound. I held back from treating my daughter's asthma as well as I should have because of fear of over-medicating and sincerely regret it.

My two cents. Good luck to you! Hope this helps

Juvenile Rheumatoid Arthritis treatment for 2-y-o

Jan 2010

Our daughter was recently diagnosed with Juvenile Rheumatoid Arthritis and the recommended treatment by the UCSF team is to give her Methotrexate, which is often used in chemotherapy.

This is scary for us, so we are curious if anyone has thoughts about alternative treatments or recommendations on medical professionals (east, west, etc) to discuss the case with. Some things we have tried or are currently doing on a localized level: accupunture, physical therapy, keeping the affected joints warm. On a systemic level: food allergy research, elimination diet of dairy (current) and gluten (next), enzyme therapy and probiotics, naproxen.

We really would like to avoid this proposed treatment and welcome your thoughts.

Matt

I'm not sure how severe your child's case is but our son developed autoimmune arthritis at age 3, and it was very responsive to motrin, so the doctors did not suggest anything with a bigger punch. One thing we did find to work was an enzyme called serragold by enzymedica. Apparently it helps to metabolize inflammatory cytokines that can continue the inflammation. Every time we take my son off it, he has a flare. best of luck. take care

Hello. I am so sorry for what you are going thru. We dealt with this recently as well. And while this is a totally personal decision, I wanted to share our experiences and why we made the choices we did...

My child was diagnosed with JRA at 4 years old and we took him to the Rheumatology clinic at UCSF. We looked into other options but decided to go for the methotrexate. This drug has been used for 40 years and, while strong, its in no way experimental. They know just what its effects are. It got my child's RA under control very quickly and he had very few side effects. Actually none really. Children actually tolerate methotrexate much better than adults because adults usually already have liver or kidney damage from drinking alcohol, etc which kids don't have. My child had no nausea or anything they said might happen. He stayed on it for about 2 years and then we were able to take him off.

For us, the most important thing is keeping the flares undercontrol. I don't know if the doctor told you, but when joints are inflamed while a child is growing, they are at risk for two joints growing differently...For example, if one joint is more inflamed than the other (getting more blood), it grows faster...or grows in the wrong way and the child will have a permanently malformed joint. So its much more important to get it under control in children who are still growing. If my chlld were an adult, I would be fine if he chose to experiment with alternative treatments, but as his parent, I felt we owed it to him to get it undercontrol before he had permanent joint damage. In addition to methotrexate, we used complementary medicine such as massage and acupuncture. Also stretching regularly.

We were also very concerned about the effects of chronic pain which can have long term effects on the nervous system, cause depression, obesity, etc. So that was also a motivating factor for us.

He is now seven, and off methotrexate and doing fine. It was such a relief to see him better...running and jumping and feeling great and able to play with his friends. I am so glad he is no longer in pain.

I wish you well and hope you have success with whatever treatment options you choose. good luck

Hello, I am a parent of a daughter with JIA. We went through a similar process of trying many alternatives. It was exhausting but important for our family to try everything. In the end we found three diet triggers that didn't appear to make it worse but created a rash on her affected joints. We eliminated citrus (in almost everything our daughter likes and the most difficult for her), strawberries and chocolate. After remission we slowly reintroduced the foods and she can now eat them. We only use organic strawberries.

We found an acupuncturist that we are very fond of who treated our daughter with care. Her own young daughter also has JA and she had treated her. For our daughter the acupuncture did not put her in remission but did help with pain and range of motion and some of the swelling; just not all of it.

We used the naproxin for 2 years. We also had our daughter going to OT, PT, a nutritionist, acupuncture and tried the Wellness Center at CPMC. (Wellness center was a very expensive waste of money.) There were times she had 6 appointments a week (if you include 3 brief acupuncture app. a week.) It was draining. We were very lucky because we ended up trying the corticosteroid shots and although they took 2 weeks to kick in she never swelled up again after. She stayed on the naproxin for another year.

We regularly see the pediatric rheum. at UC. We also were very hesitant to go for the methotrexate and it cause a lot of stress in our family as we considered/prepared for it. Our daughter was 10 at initial diagnosis. Our acupuncturists daughter was about 2 at her diagnosis. The acupuncturist is in downtown SF in the Flood building and her name is Marliese Warren. We love her and my daughter said the only good thing about her arthritis was getting to know Marliese. The local arthritis foundation seems to sponser an annual JIA information gathering once a year in the bay area which I found helpful to go to.

I think we are very lucky that medicine has developed that can help our children and unlucky in the scare it can bring using it. If you would like to email directly with questions please feel free to. Dolores

I didn't see the original post but our daughter was diagnosed with JRA just shy of her second birthday. At the time of diagnosis she was in so much pain, especially in the mornings, that she couldn't walk. It was devastating for my husband and I to see our little girl in so much pain. Fast forward three years later... She now is a happy, healthy, PAIN FREE little girl. One would never know there were anything ever wrong with her. We went the traditional, doctor recommended route. She took Methotrexate and Ibuprofen for two years, with this last year being symptom free. She has now been considered in ''remission'' for this past year and will hopefully be off all meds this spring. She has been seeing Dr. Emily VonScheven at UCSF and we have been very pleased with the care she has received. Please feel free to email me if you would like to chat any further. The best of luck! mcarroll

Hi Matt,

My sister who is now 44 years old was diagnosed with JRA when we lived in Scotts Valley back in the 70s. She could barely run or jog because her knees were so fragile. It was horrible to watch her having her knees drained with long needles and having my parents feed her tons of ecotrin - that was the treatment back then.

My parents couldn't stand torturing my sister anymore so they moved us from the gorgeous forest to the incredibly hot and dry Tucson, Arizona. After moving to that climate she was able to go into remission. She now lives in Denver, Colorado and her RA is still in remission.

Diet is also key - so make sure you know what to feed your child with RA as diet can really help. Stephanie

Juvenile Rheumatoid Arthritis - 22 month old

Noc 2007

Our 22 month old daughter was just diagnosed with JRA. We are still in the testing phase to find out the severity of her disease, but we do know she has swelling in her feet, knees and elbows. We saw Dr. Singsen at Children's Hospital. At this point we have no idea where to turn as far as support and fact gathering goes. It is all a very big shock for us and we would appreciate ANY information you might have to offer on JRA. Please feel free to reply to the group or email me directly. Mia

My daughter has JRA. We go to UCSF's pediatric rheumatology program (even though we live in the East Bay). We have been happy with their care. My daughter has improved greatly although it's all still a challenge.

Places to look for information: www.arthritis.org. They also have a newsletter, Kids Get Arthritis Too. They have events for families with JRA. Good Luck!