Juvenile Arthritis
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For many years now I have worked with children with special needs. I have worked with children with Down Syndrome, Autism, mental retardation, Fragile X, ADHD, Fetal Alcohol Syndrome, and a handful of other “syndromes.” I have worked with children who are gifted, deaf, blind, and have even worked with a child with juvenile diabetes. I have never, in my 15 years of working with children worked with a child who had juvenile arthritis.
In fact, I had never even HEARD of juvenile arthritis.
Then in the beginning of November of 2010 I noticed my almost 2 year old daughter was limping one morning. And then the next morning. But she was always fine after breakfast and since I am generally a pretty laid back mama, I didn’t call the doctor. I mean, she fine fine after a while, so she probably just pulled a muscle, right?
Well the limp came and went and then the day before my baby girls second birthday she slips out of bed that morning and she can barely walk.
My Daughter’s Knee
My husband goes to change her diaper and I hear her scream out and cry. My husband had noticed that she wasn’t extending her right knee, so he tried to extend it for her. After she calmed down, we removed her pants to find a very swollen knee.
It was a Saturday. Off to the pediatrician we went. Long story short, over the next few weeks our daughter endured several doctor visits, x-rays, and more lab work than any 2 year old should have to suffer through. We were so blessed to have an amazing medical team that wasted no time in referring us on to the “big guns” at Stanford when the swelling was not reduced with the use of Motrin around the clock for 10 days. Two weeks later E was diagnosed with Oligo-articular Juvenile Arthritis.
At the doctor on her second birthday.
I’m sorry, what? Can you repeat that please? My two year old has arthritis!? Isn’t arthritis an old person’s disease!?
Yup. That is what I was thinking when I first started consulting Dr. Google (don’t you consult him first too?). How can my kid have arthritis?
Well as it turns out, there are different types of arthritis. The word arthritis simply means “joint inflammation.” But the type we usually think of when we hear the term arthritis is Osteoarthritis: inflammation and degeneration of the joint caused by wear and tear. You know, the kind old people get.
No, my daughter has juvenile arthritis (aka juvenile idiopathic arthritis and formally known as juvenile rheumatoid arthritis). It is a chronic life long auto immune disease with no cure.
Yes, this is an auto immune disease folks. My daughter’s own immune system, the thing that is supposed to keep her healthy and safe from disease, is actually malfunctioning and mistaking her joints as the enemy and attacking them. This leads to swollen, painful joints.
E’s swollen fingers due to her JA
According to the Arthritis Foundation: “Arthritis effects the musculoskeletal system and specifically the joints – where two or more bones meet. Arthritis-related joint problems include pain, stiffness, inflammation and damage to joint cartilage (the tough, smooth tissue that covers the ends of the bones, enabling them to glide against one another) and surrounding structures. Such damage can lead to joint weakness, instability and visible deformities that, depending on the location of joint involvement, can interfere with the most basic daily tasks such as walking, climbing stairs, using a computer keyboard, cutting your food or brushing your teeth.” (www.arthritis.org)
This may not sound severe to you, but let me tell you that this disease can do serious damage to the body, and in severe cases, can actually be deadly. My daughter’s bones in her knee already have over grown a bit from all the inflammation (called bony over growth). Have you ever seen the fingers of an older person that are gnarled from years of arthritis? This can happen to children who suffer from this disease if it is not properly treated.
Treatment. What is the treatment, you may ask?
My husband drawing out the Methotrexate, a chemo agent, to treat E’s JA
Believe it or not, the treatment for this disease involves some pretty hard core medications. Some are the same ones used for chemotherapy (but in lower doses). In fact, our daughter is on one of these medications. Some children do not respond to these medications alone (which, by the way, are typically given via injection weekly at home. Yes, we have to give our daughter shots) and these children often have to move on to even more aggressive medications that are typically given via infusion every few weeks or so. The goal of these medications is to suppress the immune system just enough that it stops attacking itself.
E on the day of her injection. Isn’t her little gown adorable?
Another common treatment is steroid injections directly into the affected joint(s). Our daughter underwent this procedure in January of this year in her affected knee. Because of her age, it was necessary to have her put under general anesthesia. Going under is scary for anyone…but let me tell you it is really scary having to put your child under.We also found out that toddlers tend to have the worst reactions when coming out of anesthesia. E was no exception. The poor girl screamed for three hours straight after her procedure. It was heartbreaking.
The good news, was that the injection was a success! It eliminated the inflammation and as I write this, her knee has been inflammation free for nearly 8 months!
Let’s hope her eyes stay healthy
However, JA doesn’t limit itself to joints. If it isn’t enough that the immune system attacks its own joints, many children with JA are at a high risk for a condition called Uveitis, which is inflammation in the eyes that often has no symptoms until damage has been done. Therefore, our daughter must be followed closely by a pediatric ophthalmologist to ensure her confused immune system does not also attack her eyes.
I’ll tell you, it is no fun watching your child hobble around like an old lady and it is a little sad when your child can’t make a full fist because her knuckles are too swollen. So my family and I are working hard to do what we can to educate others about this silent disease and try to help raise money to fund research for better treatments and hopefully a cure. Because believe it or not, Juvenile Arthritis is one of the most common childhood diseases…it is more common than juvenile diabetes and sickle cell anemia…though more people are familiar with those diseases.
There are nearly 300,000 children in the US who suffer from a form of Juvenile Arthritis.
And there is no cure for JA. Children also do not just grow out of it. (Darn Dr. Google was very wrong about that…). The hope is to get the disease into remission.
E, the day we hit the $15,000 mark on fundraising
This year we helped support the mission of the Arthritis Foundation by raising funds and participating in the Arthritis Walk. The walk took place on April 30th 2011 and our team raised over $17,000 dollars towards Arthritis research and education. We are devoted to make sure our baby girl, and others like her, will ALWAYS be able to dance.
Watch out for us next year….hoping to break $20,000!?
Because really, doesn’t she deserve a cure?
In addition to the Arthritis Walk, the Arthritis Foundation puts on all kinds of other fundraisers all over the country. Here in California, the California Coast Classic is yet another wonderful event to help raise funds for arthritis research, education, and community programs.The CCC is an 8-day, 525 mile ride from San Francisco to Los Angeles. We are proud to announce that the Arthritis Foundation has asked if our daughter, E, can be the youth honoree for the first leg of the trip (San Fransisco to Santa Cruz). Our family will proudly be at the starting line on September 17th 2011 to send off the amazing riders who are dedicating their time for my baby girl, and others like her. For this event, I was asked to make a video to display at the kick off dinner. Please take a few minutes and check it out.
Here is the video I made for our walk, it has been viewed over 2,000 times so far.
You can read about our team and our fundraising efforts by following the link below:
For more information on Juvenile Arthritis, including symptoms, please check out this page by the Arthritis Foundation:
Thank you for taking the time to read about this disease that means…well….the world to me.
Cheers,
Katie
31 Responses to Juvenile Arthritis
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Welcome! I'm Katie- a mama to two littles and a pediatric speech language pathologist. You'll find all kinds of goodies here about speech and language development and tips to help expand speech and language skills in children! I hope you enjoy your stay and learn a little along the way. Popular Topics
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Loved your blog. I work in a private child care center doing after care and found your sight when I googled fall and halloween songs and fingerplays. You have everything that I need! I loved reading about your decision to become a SLP. I also want to say that I was so touched by your story about your daughter’s arthritis. I had heard of juvenile arthritis actually. My sister (and we are both in our late 50′s) had a friend that she went through jr high and high school with that had JA. And I do think they called in JRA at the time. (late 60′s and 70′s). Now is a great time to get the word out about it since there is so much technology available. I will pray for your sweet daughter and your family.
Debi, Thank you so much for your kind words! Yes they recently changed the term to “JIA” rather than “JRA.” I hope your sister’s friend is now benefiting from the huge advancements in treatments since the ’70′s. I’m glad you found my site helpful! Please visit again and share with your friends!
I just watched your film clip. I don’t know if you have published it on you tube but I think it is wonderful and very moving. Best wishes for little E’s future.
Thank you so much Lin. Yes, I have both videos I have made on youtube to share with others. Thanks for stopping by!
I have worked with many kids with Juvenile Arthritis and it is so hard for the kids and the families. It is awful to be in pain so much. What a journey to be on. I’m thrilled to have found your blog.
Tonya Thank you so much for stopping by!! I am loving your blog…learning things for my daughter!
Katie, I stumbled onto your website when looking for teacher resources. While I was on here I noticed your JIA tab. I really appreciate you sharing your story. My daughter was diagnosed with Systemic JIA when she was 9. This was the most helpless I have ever felt in my life. Adriann was in pain and I could do nothing to fix it. Thankfully she did not lose faith. We have been on several different medications, drug trials and more. I keep hoping that this medication will be the one to put her into remission. I just keep praying and my daughter, well she is one tough cookie.
Thank you again for sharing your story. ~Brandi
Brandi I am so sorry to hear your daughter has systemic. My heart goes out to you. I hope she is doing well…I wanted to use this blog to also spread awareness because so many people do NOT KNOW what JA is, and our kids deserve a voice. Please feel free to email me anytime. I am also part of a couple JA support groups on facebook, so let me know if you are interested in joining one. Take care!
I’m an SLP blogger (check out my blog if you haven’t yet!) and I LOVE your blog! I’m using your snowman book in planning for next month!
But also… I had JRA! I was given the all clear when I was 7 years old that I no longer had JRA, but until then I did weekly pool therapy, nightly leg braces, and monthly blood testing. Hugs to your and your family!
Oh, forgot to add that I was diagnosed at 2 and that I was being treated very near to where you are (from what I can gather from your posts…)
I just discovered your blog tonight and I love it; I am an SLP. I am 50 years old and was DX with JRA at the age of 7 years (43 years ago!) though I expect I had it sooner since I limped at the age of 3 or 4. My parents thought I was imitating my grandfather’s limp (he had an artificial leg). Anyway, I noticed your JA heading. I am sorry your baby has to deal with this. But I expect treatments have improved over the years. I was placed on 12 aspirin per day back then (tinnitus as a result). I have had long respites when it did not bother me and I learned to manage things when it flared up. Some children outgrow it altogether (like the previous comment). Hope this is the outcome you all have.
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Suzanne thanks for your kind words. Yes the treatments have improved so much, thank goodness! My daughter is doing well right now, thanks to the meds.
We take it one day at a time!
Hi Katie,
My 2 1/2 year old son was just diagnosed with this disease 10 days ago. He could not walk each morning for 2-4 hours for a couple of weeks. He just went on the naproxen 2x’s/day right now for another 2 weeks until all of his labs come back. I was wondering if you changed your daughter’s diet at all (to remove cow’s milk mostly) and if so did you see any improvements? I am going to have him allergy tested just to see what comes back. I have been overwhelmed with a sadness over everything he has to go through! Thanks for posting your story and I hope your daughter is doing well. Will you be blogging with updates?
Wow! I am a Speech Language Pathologist Assistant in California and I’ve been using some of your therapy materials and came back today to find more freebies and stumbled upon your JRA section. I was diagnosed at age 3 (in 1989, I’m 26 now) with Polyarticular Juvenile Rheumatoid Arthritis. I have it in my left pointer finger (where it all started), left wrist, both knees, and both ankles. I went through countless doctor appointments, cortisone shots, underwent surgeries to drain the fluid from my knees, physical therapy, and every 6 months had my eyes checked for the same reason as your little girl.
Your video made me cry. I know what your daughter and your family are going through. But don’t give up! My parents never treated my JRA as a disability or a disease. We dealt with it but they never made it a scary thing. I was on Naproxen at age 4 but soon after my mom took me off it because she was worried about side effects in the long run. I’ve never been on any medication for it. I can say my pain tolerance is REALLY high because of it. When I was first diagnosed and for a few years after I wore a hard splint on my knee and wrist just at night. (My doll and I had matching splints!)
I never let my JRA hold me back. Growing up I did ballet, played softball, basketball, water polo, swimming, and volleyball. I lived a full and typical life! Yes, most days I’m in constant pain but the more I move the better I feel. I am very thankful for my supportive family, friends, and husband.
I’m glad I could share my story with you. Yours truly touched me and I had to write to you.
I just discovored your blog via Pinterest and love it! I was diagnosed with JRA at the age of 3 when my elbow joint fused, and then Uveitis at 7. I am now 29 and luckily have been in remission for over 10 years. Thank you for talking about your struggle and educating your readers on this much unknown and misunderstood disease. I look forward to reading updates!
Lisa, thank you for your encouraging words! I am so happy to hear of your remission. We are hoping to get my daughter back into a medical remission and hopefully a non medicated one soon! I try to keep my readers updated, thank you SO much!
I stumbled upon your website through pinterest. I was also diagnosed with JRA when I was 2 years old. I am now 23 and a full time preschool teacher. My thoughts go out to you and you family. I promise you it will get easier
It’s all about finding the right combination of medication and PT. xoxox to your little one!
Katie thank you so much for your comment! We appreciate the xoxox!
I am a SLP. I had JRA in my knees and hips. I was diagnosed at age 2. I remember the monthly blood test, bright side shots really don’t hurt now as an adult. My parents encouraged me to play sports, dance, go to gym even if that day I had trouble walking, and did competitive swimming. I am 37, and I have some flare ups once in a while but live a happy life. This is mearly a bump on the road!
I was diagnosed at age 5 I am now 50. E’s story brought tears. I so remember being so scared because noone knew what RA was, so they treated it as regular Arthritis. It does get better. I still have pain some days more than other days. The weather and the change the barometer affects mine. We are all different it is trail and error to find out what affects us. It is amazing what we can actually accomplish with love from our family and friends. Your little one has great things in front of her. Much love and hope.
Edith that you so very much for your note. My daughter is the most amazing and strong little girl…I do think that having JA will, in the long run, probably make her into a better person. A lot of kids with chronic illness are so very empathic and kind…so as much as this disease sucks, we do try to look at the positives as well. Take care and may you always be healthy!
It is so nice to find a story similar to ours! My daughter Ella who is now three has been struggling with a stiff swollen knee since April of last year. She was perfectly healthy with no problems and then she fractured her growth plate and was put in a cast for five weeks. After the cast came off she couldn’t straighten her leg and complained about walking. Since April of last year we have seen several doctors, have been going to PT, and all kinds of stuff. Finally yesterday we had our first appointment with a pediatric rheumatologist and after going over all her blood work and past history she told us our daughter had JA.. It was nice to finally have an answer but I was hoping for that magic fix that would allow my baby to walk perfectly normal, ride her bike again, and be able to run with her cousins and friends. Instead I was told “this isn’t anything that can be controlled in a couple months, this is going to take years.” I was slightly sad after her appointment and today after I scheduled her appointment with a pediatric ophthalmologist I decided I am going to research JA so I can help my child from home as well. I am glad I found this blog it gives me hope that my daughter might be able to walk pain free someday!
Katie, stories like yours is WHY I write about my daughter’s illness here. Your sweet girl should not have had to wait 9 months for a diagnosis. I am so sorry your daughter has been diagnosed with this disease and hope she is treated aggressively and put into a remission ASAP. PLEASE do not hesitate to contact me via email with ANY questions. ANYTIME!
I got diagnosed with Arthritis aged 13, I am now a 30 year old mum of 1 son. I always thought I was too young to have this condition aged 13, and that it was just an old persons disease, then later in life when I found out you can have it even younger as young as 1 and 2, it made me feel very sad indeed that these poor innocent young souls were suffering in daily pain and not old enough to be aware or knowledgeable enough to understand about illness and disease and how it affects our bodies! My son is soon to be approaching 5 years old and he is only just understanding about it now, how he has to be gentle with my hands and how I sometimes get fatigue. I am hoping to write some E books soon on Arthritis and autoimmune health issues! I have experience as both a teen and a mum with this condition but would be nice to gain more insight into knowing what its like in the daily life of a very young toddler and child with this condition. So I hope to continue following your blog.
Wow, I went to read about the time it takes to blog, and wound up here. I was diagnosed at age 2 with JRA, and at age 4 with uveitis. I take methotrexate and am on Remicade. My JRA had gone away once I hit 18, but has recently come back, after the birth of my second child. My uveitis is in a controlled remission, not sure if I will ever go off of medication. Your daughter is lucky to have you fighting for her every step of the way! Thank goodness for medical advances, I was in traction at age 2 for two weeks, and on 8 aspirin a day for years, with tinnitus as a result. Good luck!
THANK you!! For finally confirming what I thought my doctor had and the stupid doctors didnt figure out!! My baby in Nov woke screaming one morning when changing nappy, I thought she broke her leg or something but figured out her knee was hurt and swollen. I bandaged and iced it, and swelling went down.
Dec just before Xmas it flared up again, with my parents coming down to visit there was not time for docs, so went afterwards. Her knee was swollen again and she was hobbling along. Had xrays done, nothing wrong, doc bandaged her up in few days swelling down and fine. She was attempting to walk…
A week or so later.. swollen again and she limping, wont walk at 16 months.. so another doc gave her anti-inflammotories and antibiotics, 10 days later, swelling down and she’s walking!! I mean walkoing.. walks from room to bathroom looking for her sister, we walked along beach and she let go of my hand and carried on walking.. all good yay!
Now again she’s slowly walking less and less, so I got her walking ring for last resort so she can have support, now she’s limping again and doesnt want to walk, just says “up Up” all the time and the more we force her to walk, though sometimes she really wants to walk… she just doesnt ..
Now I see your video and she has the same hobble along limp!
Rellieved I finally know what’s wrong to go to a doc and get PROPER treatment! but sad she has to live with this for the rest of her life!
I am so glad I found this page. Today our 5 year old daughter was told she has arthritis. We haven’t gotten into details or what type exactly. My husband and I are still in shock and worry about her future. She has so many of the symptoms that your daughter has as well. I’d love to stay in contact with you as you know more about the medications and treatments than I do. Thanks for the inspiration and the post so that I can relate to others who are going through the same thing.
Christina, I am so sorry to hear of your daughter’s diagnosis. The good news is that there ARE treatments that WORK, unlike just 20 years ago when they were still prescribing large doses of asprin. Feel free to email me katie@playingwithwords365.com with any questions you may have. Good luck!
Hey there! I’ve been reading through many of your posts regarding speech due to some delayed abilities with y second born daughter. What caught my eye was the tab you had on the JRA. My oldest was diagnosed with JRA at the age of 18 months, and it was a terrible experience for our entire family. Eventually I was not comfortable with many of the medications that were being prescribed, so I contacted a naturopath MD who I really owe the world to. She did some DNA testing and found that my daughter really had Leaky Gut Syndrome which was manifesting in JRA. Long story short, we had to change her diet and add some supplements, but she has been COMPLETELY medication free since she was two, and she is now seven. The only thing we do differently than others is that we avoid gluten. It wasn’t long once we removed gluten from her diet that all of her autoimmune issues resolved. I know many will think it is crazy, but it is the honest truth, and I really feel like the medical community hasn’t really explored food sensitivities and autoimmune diseases. I hope and pray that someone will read this and be able to experience the hope that I received when I finally felt like I had an answer! God bless!
Thank you soooo much for publicizing JIA! We have a lot in common: we are both SLPs and both of our daughters were diagnosed with JIA right before turning age 2 (hers is mostly in her ankle, knee, jaw). My daughter just turned 8, is still getting weekly Methotrexate shots, gets daily steroid eye drops to combat uveitis, has undergone about 5 fluid removal/joint injection treatments in the past 6 years, and –most importantly– seems to be living normally and fairly pain free! Yes, it’s something that is never far from our minds, but no, it hasn’t stopped our family from doing whatever we want. We even live in China, where she and her brother are quickly learning Chinese! We live day by day and step by step and checkup by checkup, but we are unstoppable
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Hi Megan! It is too funny…I have “met” so many SLPs with children with JA or, they were diagnosed themselves as kids! Thanks so much for your comments, and good luck to you and your family. I hope your daughter stays healthy!!