{"id":13256,"date":"2020-07-23T10:00:50","date_gmt":"2020-07-23T14:00:50","guid":{"rendered":"https:\/\/www.singlecare.com\/blog\/?p=13256"},"modified":"2020-08-26T15:59:26","modified_gmt":"2020-08-26T19:59:26","slug":"living-with-juvenile-idiopathic-arthritis","status":"publish","type":"post","link":"https:\/\/www.singlecare.com\/blog\/living-with-juvenile-idiopathic-arthritis\/","title":{"rendered":"What it&#8217;s like raising a child with juvenile idiopathic arthritis (JIA)"},"content":{"rendered":"<p>T<span style=\"font-weight: 400;\">he first time my daughter was sedated for an MRI, it was to \u201ccheck to make sure there\u2019s nothing worrisome in her head.\u201d Those were the exact words her doctor used.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I knew what she was saying\u2014they were looking for tumors. But she said the words as lightly as she could, a strained smile on her face, trying to keep me calm even as we both knew something was wrong.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Searching for answers<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">My daughter had been complaining about her neck for over a week. The night before, those complaints had erupted into screaming and tears, prompting me to scoop her up from the floor and rush her to the emergency room. By the next day, she was dragging her right leg behind her. Her neck was stiff. Meningitis (my first concern) had been ruled out, and now there was this MRI\u2014happening right away.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">That too came back clear. And by the time we left the hospital, my daughter seemed mostly recovered. \u201cSome weird virus,\u201d her doctor guessed. And we both hoped she was right.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But then it happened again.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Over the course of the next several months, my daughter was poked and prodded countless times. She was seen by professionals and evaluated for everything from leukemia to juvenile idiopathic arthritis (JIA).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It was the latter that made the most sense. By this point, my daughter\u2019s wrist had also locked up completely. And yet, there were things about her presentation the pediatric rheumatologists said didn\u2019t add up. They ordered another MRI and told me if that didn\u2019t show definitive signs of arthritis, they would be referring her to neurology.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Symptoms of juvenile idiopathic arthritis<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Common symptoms of JIA include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Joint pain, especially in the morning or after a nap<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Joint inflammation usually presented in knees, hips, elbows, or shoulders<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Stiffness that may be presented as a limp or clumsiness<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">High fever<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Swollen lymph nodes<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Skin rash around the torso<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">You should take your child to a healthcare provider for a thorough physical examination if he or she has any of these symptoms lasting longer than a week. The doctor may also order blood tests or an X-ray to rule out other autoimmune diseases with similar symptoms.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Getting a juvenile idiopathic arthritis diagnosis\u00a0<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Thankfully, in my daughter&#8217;s case, that MRI did provide proof of arthritis. I say thankfully only because the alternatives were actually worse\u2014some with potential outcomes I don\u2019t even like to think about now. While I had never heard of JIA prior to my daughter\u2019s ordeal, and had never even realized kids could get arthritis at all, this at least seemed manageable. After all, plenty of people deal with arthritis, right?<\/span><\/p>\n<p><span style=\"font-weight: 400;\">That was my thought process at least. But then I learned more about what JIA would involve; what it would mean for the rest of my daughter\u2019s life.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">What is juvenile idiopathic arthritis?<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">\u201cJuvenile idiopathic arthritis is the most common type of arthritis in children and teenagers,\u201d says<\/span><a href=\"https:\/\/www.linkedin.com\/in\/leannposton\/\" target=\"_blank\" rel=\"noopener noreferrer\"> <span style=\"font-weight: 400;\">Leann Poston<\/span><\/a><span style=\"font-weight: 400;\">, MD, a licensed physician who previously practiced pediatric medicine and now contributes to Ikon Health. JIA is formerly known as juvenile rheumatoid arthritis (JRA). \u201cIt is an autoimmune disorder, which means it is in the class of disorders in which the immune system cells have difficulty telling the difference between self or cells that make up a person and non-self or invaders.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In layman&#8217;s terms: The immune system attacks the joints.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Does juvenile idiopathic arthritis go away?<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">There are <\/span><a href=\"https:\/\/kidshealth.org\/en\/parents\/jra.html\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">seven types of JIA<\/span><\/a><span style=\"font-weight: 400;\">, each representing different levels of severity:<\/span><\/p>\n<ol>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Systemic JIA<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Oligoarthritis<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Polyarticular arthritis, rheumatoid factor negative<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Polyarticular arthritis, rheumatoid factor positive<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Psoriatic arthritis<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Enthesitis-related arthritis<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Undifferentiated arthritis<\/span><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">My daughter has been diagnosed with the type of JIA called polyarticular JIA, which means she has more than five joints involved (we\u2019ve actually stopped counting all her affected joints at this point, there is just too much involvement to keep track of). Her type is the least likely to be grown out of\u2014in all likelihood, she will have arthritis for the rest of her life.\u00a0<\/span><\/p>\n<p>JIA is a chronic disease, with no cure. Yet, with treatment, remission from symptoms is possible. Experts believe that the more joints affected, the less likely the symptoms will go into remission.<\/p>\n<h2><span style=\"font-weight: 400;\">Juvenile idiopathic arthritis treatment<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Treating my daughter&#8217;s JIA involves medications meant to weaken her immune system so that it stops attacking her body. For now, she\u2019s on a chemo medication called <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/methotrexate\"><span style=\"font-weight: 400;\">methotrexate<\/span><\/a><span style=\"font-weight: 400;\">. I give her an injection myself every Saturday night. It renders her immunocompromised and comes with a long list of side effects, which include headaches, chronic fatigue, and recurrent canker sores. A daily dose of <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/folic-acid\"><span style=\"font-weight: 400;\">folic acid<\/span><\/a><span style=\"font-weight: 400;\"> helps to ease those side effects some, but not entirely. Still, it allows her to continue running and playing like the child she still is. And for that, we are thankful.<\/span><\/p>\n<p><b>RELATED: <\/b><a href=\"https:\/\/www.singlecare.com\/blog\/children-injections-injectable-medication\/\"><b>Helping young children adjust to injections<\/b><\/a><\/p>\n<h3><span style=\"font-weight: 400;\">Other treatment options<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Depending on the form of arthritis, flare-ups of JIA may be manageable with nonsteroidal anti-inflammatory drugs (NSAID) such as ibuprofen or naproxen, and joint damage can be slowed or prevented with physical therapy. In severe cases, steroids may be prescribed along with biologic agents such as anakinra, canakinumab, or tocilizumab. JIA rarely requires surgery; although some complications include eye inflammation and growth problems.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Finding our juvenile idiopathic arthritis support group<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Today my daughter is 7 years old. She is one of the<\/span><a href=\"https:\/\/www.arthritis.org\/diseases\/juvenile-arthritis\" target=\"_blank\" rel=\"noopener noreferrer\"> <span style=\"font-weight: 400;\">nearly 300,000<\/span><\/a><span style=\"font-weight: 400;\"> children in the United States who has JIA. It\u2019s a small, but tight, community\u2014one I am thankful we have been able to immerse ourselves in over the past several years.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As a single mom caring for a child with a chronic health condition on my own, I\u2019ve often felt very alone. But through<\/span> <a href=\"https:\/\/www.facebook.com\/groups\/MotheringJuvenileArthritis\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">Facebook groups<\/span><\/a><span style=\"font-weight: 400;\">,\u00a0<\/span><a href=\"https:\/\/www.arthritis.org\/events\/ja-conference\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">national conferences<\/span><\/a><span style=\"font-weight: 400;\">, and even an annual JIA family camp, I have been able to find my support system.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Seeking out these sources of support is a suggestion Emma Crowley, head of patient advocacy for the\u00a0<\/span><a href=\"https:\/\/raredisease.powellcenter.med.ufl.edu\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">University of Florida\u2019s Powell Center for Rare Disease Research and Therapy<\/span><\/a><span style=\"font-weight: 400;\">, makes to all parents of children with chronic illnesses.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cOften, parents are hesitant to [do] this, but it\u2019s not only to help emotional distress,\u201d Crowley explains. \u201cSupport groups, in person or online, are full of other patients who have been where you are. Not only can they genuinely emphasize with you, but they can teach you. They\u2019ve created their own tips and tricks that are passed on. Especially among rare diseases, many of these support groups are very close.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019ve connected with other moms who know what it is we are up against and who have been able to offer me advice when I\u2019ve been lost in the sea of choices I\u2019ve had to make. And because of those connections, I\u2019ve even been able to hire a teenager with JIA to help babysit my daughter\u2014someone she can connect with and be supported by even when I don\u2019t fully understand what she\u2019s going through.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This community has become our family. And having that family has made every step of this journey so much easier to handle than it otherwise would have been.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">COVID has added some additional challenges to that journey\u2014my daughter\u2019s doctor recently told me to plan on keeping her home from school next year, regardless of what the school system decides. But even in that, we\u2019ve known we aren\u2019t alone, surrounded by other families in a similar boat, all trying to figure out our next steps together as we work to keep our kids safe.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">And I suppose that\u2019s the biggest lesson of all when it comes to parenting a child with a chronic health condition: You learn to adapt.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I\u2019m just thankful we\u2019ve never had to adapt alone.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The first time my daughter was sedated for an MRI, it was to \u201ccheck to make sure there\u2019s nothing worrisome in her head.\u201d Those were the exact words her doctor used. I knew what she was saying\u2014they were looking for tumors. But she said the words as lightly as she could, a strained smile on [&hellip;]<\/p>\n","protected":false},"author":93,"featured_media":13468,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8318],"tags":[3564,790],"coauthors":[9053],"class_list":["post-13256","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community","tag-children","tag-chronic-disease","wpautop"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.8 (Yoast SEO v27.8) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Raising a child with juvenile idiopathic arthritis (JIA)<\/title>\n<meta name=\"description\" content=\"Juvenile idiopathic arthritis is an autoimmune disease where the body attacks the joints. 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