{"id":5347,"date":"2019-08-07T11:31:28","date_gmt":"2019-08-07T15:31:28","guid":{"rendered":"https:\/\/www.singlecare.com\/blog\/?p=5347"},"modified":"2020-07-13T20:54:06","modified_gmt":"2020-07-14T00:54:06","slug":"teens-chronic-condition","status":"publish","type":"post","link":"https:\/\/www.singlecare.com\/blog\/teens-chronic-condition\/","title":{"rendered":"How to prepare teens with chronic conditions for college and being on their own"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">When my daughter was 4 years old, she was diagnosed with Juvenile Idiopathic Arthritis (JIA). This is a <\/span><a href=\"https:\/\/www.singlecare.com\/blog\/college-vaccinations\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">chronic condition<\/span><\/a><span style=\"font-weight: 400;\"> that she will likely struggle with all her life. It requires weekly immunosuppressant injections (currently a chemo drug) and involves regular appointments with specialists to ensure her joints and her eyes aren\u2019t sustaining permanent damage.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It hasn\u2019t been easy, but we\u2019ve adjusted. And at 6 years old, my daughter has a pretty firm, age-appropriate, handle on her condition and the steps required to keep her well.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But as of now, I handle the vast majority of her care. I make the appointments, I give her injections, I monitor her symptoms and ensure she gets the sleep and nutrition she needs. Keeping my daughter healthy is a job I embrace wholeheartedly right now\u2014though I know the day will come when she needs to take on the responsibilities of her care herself.\u00a0<\/span><\/p>\n<h2>Preparing a child with a chronic condition for adulthood<\/h2>\n<p><span style=\"font-weight: 400;\">It\u2019s scary for parents to transfer the responsibility of care to their children\u2014then trust them to manage their chronic condition independently in college. The parents in my JIA groups regularly talk about the stress of preparing kids for life on their own. I\u2019ve learned from them that these steps can help ease the transition.<\/span><\/p>\n<h3><b>1. Start early.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">\u201cThe process of preparation is very long,\u201d says <\/span><a href=\"https:\/\/www.montefiore.org\/body.cfm?id=2088&amp;action=detail&amp;ref=545\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">Lynn Davidson<\/span><\/a><span style=\"font-weight: 400;\">, MD, an American Academy of Pediatrics (AAP) spokesperson. \u201cAnd, basically, it\u2019s about how to help your child become independent.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The AAP<\/span><a href=\"https:\/\/www.aap.org\/en-us\/about-the-aap\/aap-press-room\/Pages\/Updated-Report-on-Health-Care-Transitions-for-Youth.aspx\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\"> recommends<\/span><\/a><span style=\"font-weight: 400;\"> starting the transfer of responsibilities as early as 12 to 14 years old. Patient advocate <\/span><a href=\"https:\/\/ilanajacqueline.com\/\"><span style=\"font-weight: 400;\">Ilana Jacqueline<\/span><\/a><span style=\"font-weight: 400;\">, author of the book, <\/span><a href=\"https:\/\/www.amazon.com\/Surviving-Thriving-Invisible-Chronic-Illness\/dp\/1626255997\/ref=tmm_pap_swatch_0?_encoding=UTF8&amp;qid=&amp;sr=\" target=\"_blank\" rel=\"noopener noreferrer\"><i><span style=\"font-weight: 400;\">Surviving and Thriving with an Invisible Chronic Illness<\/span><\/i><\/a><span style=\"font-weight: 400;\">, agrees. \u201cChildren need to be taught from a very early age that their health is their responsibility,\u201d she says.\u00a0<\/span><\/p>\n<h3><b>2. Transition gradually.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">\u201cIt should be a gradual process of teaching children how to start doing things on their own, but with supervision,\u201dsays Jacqueline.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">To aid that process, she suggests teaching adolescents to use phone alarms, or <\/span><a href=\"https:\/\/www.singlecare.com\/blog\/best-medication-reminder-apps\/\"><span style=\"font-weight: 400;\">medication <\/span><span style=\"font-weight: 400;\">management<\/span><\/a><span style=\"font-weight: 400;\"> apps, as reminders to take their medication and encouraging them to speak up and ask questions at doctors\u2019 appointments.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cIf you begin the transition at 18, you\u2019ve already missed valuable time,\u201d Jacqueline explains. \u201cStarting the transition as soon as the child is capable of completing certain tasks on their own makes the process less anxiety-producing for both the parent and the child.\u201d<\/span><\/p>\n<h3><b>3. Research resources.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">Foundations for chronic conditions often offer specific advice to aid in these transitions. For instance, the Crohn&#8217;s and Colitis Foundation has <\/span><a href=\"https:\/\/site.crohnscolitisfoundation.org\/campus-connection\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">a website<\/span><\/a><span style=\"font-weight: 400;\"> just for adolescents going off to college. These sites provide checklists and guidelines young adults may refer to once they\u2019re on their own.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cPatients can register for disability services at their college, request special housing or diet accommodations if necessary, and find a local healthcare provider if college is far from home,\u201d says gastroenterologist <\/span><a href=\"https:\/\/www.childrensal.org\/dr-traci-w-jester-gastroenterologist-hepatology-nutrition\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">Traci Jester<\/span><\/a><span style=\"font-weight: 400;\">, MD, co-chair of the Crohn&#8217;s and Colitis Foundation\u2019s pediatric affairs committee.\u00a0<\/span><\/p>\n<h3><b>4. Find a new treatment team.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">Finding a new primary care physician can be challenging for any adult who has outgrown a pediatrician\u2019s care\u2014it\u2019s especially so for teens with a chronic condition that creates a complicated medical history.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Dr. Jester says that young adults can make that transition easier by ensuring former care providers send records to the new physician or bringing records themselves. She also advises patients to make two lists before their first appointment with a new care provider: all current medications and questions for the physician.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Dr. Davidson suggests that patients transfer their primary care physician before tackling each specialist. \u201cAs they reach adulthood, it\u2019s good to have them grounded in a way with a primary care provider. That provider may have suggestions or preferences on which specialists the patient should then work with.\u201d<\/span><\/p>\n<h3><b>5. Request a medical history.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">Dr. Davidson recommends going beyond providing basic files: \u201cThe biggest problem is that it\u2019s often impossible for the provider to go through reams of medical records in order to understand the patient\u2019s medical history. So the best thing to do is to provide an excellent medical summary from the child\u2019s previous medical provider and specialists.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">She explains that most providers are willing to create a medical summary. Ask them to include key pieces of medical history: medications, diagnoses, surgeries, illness presentations, and any other relevant details.\u00a0<\/span><\/p>\n<h3><b>6. Create a personalized medical history.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">It can be helpful for the young adult to create their own medical history as well. They can write a paragraph or two explaining how they perceive their condition. It\u2019s not always how an adult provider would understand it, Dr. Davidson says.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Jacqueline says parents can prepare their teens to explain their condition to others by encouraging them to keep detailed records. \u201cYoung adults should start keeping their own medical binders from an early age,\u201d she adds. \u201cBeing a responsible patient means keeping a detailed record of past issues, possible triggers, medications, and side effects.\u201d<\/span><\/p>\n<h3><b>7. Ask the pediatrician to contact the new provider.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">\u201cIf at all possible, I encourage the pediatrician to do a warm handoff, particularly with more complicated patients, for that new provider,\u201d Dr. Davidson says. \u201cA phone call or email to give the new provider a heads up, while also sending the medical summary and leaving the door open for continued communication if necessary, can be very helpful in allowing for a smooth transition.\u201d<\/span><\/p>\n<h3><b>8. Let go, but keep in touch.<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">No matter how prepared a teen may be, letting go is inevitably hard for parents who have been so involved for so long. \u201cA parent is always going to feel some apprehension about this,\u201d Dr. Jester says. \u201cBut starting with small responsibilities and gradually increasing is how to best ensure a smooth transition.\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">She also says that communication between the parent and patient is critical during this time. \u201cParents can be reminded that the better prepared the student is with the watchful eye of the parent at home, the better they will do when independent.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">And when that time comes? Jacqueline wants young adults with a chronic condition to know, \u201cYou can do it. You will do it. And you\u2019ll feel stronger and more secure knowing that you\u2019re in charge!\u201d<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>When my daughter was 4 years old, she was diagnosed with Juvenile Idiopathic Arthritis (JIA). This is a chronic condition that she will likely struggle with all her life. It requires weekly immunosuppressant injections (currently a chemo drug) and involves regular appointments with specialists to ensure her joints and her eyes aren\u2019t sustaining permanent damage.\u00a0 [&hellip;]<\/p>\n","protected":false},"author":85,"featured_media":8857,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8029],"tags":[790],"coauthors":[9053],"class_list":["post-5347","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-education","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>How to Prepare Kids with a Chronic Condition for Adulthood<\/title>\n<meta name=\"description\" content=\"It&#039;s scary to watch your child start managing their chronic condition independently after high school, but these tips can make the transition easier.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.singlecare.com\/blog\/teens-chronic-condition\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Prepare your teen with a chronic condition for college\" \/>\n<meta property=\"og:description\" content=\"It&#039;s scary to send teens off to college. These 8 tips can make it a little easier.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.singlecare.com\/blog\/teens-chronic-condition\/\" \/>\n<meta property=\"og:site_name\" content=\"The Checkup\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/singlecare\" \/>\n<meta property=\"article:published_time\" content=\"2019-08-07T15:31:28+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2020-07-14T00:54:06+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.singlecare.com\/blog\/wp-content\/uploads\/2020\/02\/080719_Health_College.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Leah Campbell\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:title\" content=\"Prepare your teen with a chronic condition for college\" \/>\n<meta name=\"twitter:description\" content=\"It&#039;s scary to send teens off to college. 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