{"id":5975,"date":"2021-10-19T16:26:11","date_gmt":"2021-10-19T16:26:11","guid":{"rendered":"https:\/\/www.itsan.org\/us\/?p=5975"},"modified":"2025-08-14T14:22:55","modified_gmt":"2025-08-14T14:22:55","slug":"caregivers-appropriate-care-roadmap","status":"publish","type":"post","link":"https:\/\/www.itsan.org\/us\/2021\/10\/19\/caregivers-appropriate-care-roadmap\/","title":{"rendered":"Caregivers &#8211; Appropriate Care Roadmap"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-0  el_before_av_three_fourth  avia-builder-el-first  first flex_column_div av-zero-column-padding  '     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_heading-60ca68c47b5cef5881e99b08b2efda94\">\n#top .av-special-heading.av-av_heading-60ca68c47b5cef5881e99b08b2efda94{\npadding-bottom:10px;\n}\nbody .av-special-heading.av-av_heading-60ca68c47b5cef5881e99b08b2efda94 .av-special-heading-tag .heading-char{\nfont-size:25px;\n}\n.av-special-heading.av-av_heading-60ca68c47b5cef5881e99b08b2efda94 .av-subheading{\nfont-size:15px;\n}\n<\/style>\n<div  class='av-special-heading av-av_heading-60ca68c47b5cef5881e99b08b2efda94 av-special-heading-h3  avia-builder-el-1  avia-builder-el-no-sibling '><h3 class='av-special-heading-tag'  itemprop=\"headline\"  >Caregivers &#8211; Appropriate Care Roadmap<\/h3><div class=\"special-heading-border\"><div class=\"special-heading-inner-border\"><\/div><\/div><\/div><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf av_three_fourth  avia-builder-el-2  el_after_av_one_full  el_before_av_one_fourth  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>Supporting and Protecting Your Family: Your Right to Access Appropriate Medical Care For Your Child During TSWS<\/strong><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-5979\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/fam.jpg\" alt=\"\" width=\"396\" height=\"262\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/fam.jpg 396w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/fam-300x198.jpg 300w\" sizes=\"auto, (max-width: 396px) 100vw, 396px\" \/><\/p>\n<p>ITSAN encourages anyone going through Topical Steroid Withdrawal Syndrome or caring for someone in TSW to work with a TSWS supportive doctor in order to access appropriate care.\u00a0 ITSAN does not diagnose or recommend treatment or medication.\u00a0 ITSAN maintains a list of TSWS (Topical Steroid Withdrawal Syndrome) supportive doctors recommended by members.\u00a0 If you are looking for a place to start, check the list in the Files section of the Facebook group: <a href=\"https:\/\/www.facebook.com\/groups\/ITSANSupport\/?ref=bookmarks\">ITSAN Topical Steroid Withdrawal Syndrome Support Group &#8211; Private Group<\/a><\/p>\n<p>Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as \u201csupportive\u201d by members of ITSAN support groups. This usually means supporting your wishes to use a \u2018no steroid\u2019 approach, and does not always mean they are familiar with TSWS. You may want to confirm their perspective on TSWS before booking an appointment.<\/p>\n<p>Share your TSWS supportive healthcare provider\u2019s full contact info (name, address, phone) to be added to ITSAN\u2019s member recommended list. Email us at: info@itsan.org<\/p>\n<p>As a caregiver advocate and parent to a child who is now seven years TSW, before I was able to establish care with a TSWS supportive doctor, I created my own roadmap to protect my child and my choice not to pursue a treatment (topical steroid creams), that had worsened his condition. I knew of other parents of children who had experienced extreme, iatrogenic reactions to topical steroid cream treatment and who had experienced the risk and stressors involved in advocating for appropriate care. The suggestions below are from my experience of what my family did while my son went through TSWS. This roadmap highlights ways to be proactive in advocating for your child and family during Topical Steroid Withdrawal Syndrome.<\/p>\n<p>Again, ITSAN does not diagnose or recommend treatment or medication.<\/p>\n<p><strong>For our family being prepared as a parent caregiver during TSW meant: <\/strong><\/p>\n<ul>\n<li>Bringing a family member to medical appointments as a note taker for medical accountability until we established care with a supportive and trusted pediatrician\/provider.<\/li>\n<li>Accessing copies of all of my child\u2019s medical records.<\/li>\n<li>Correcting inaccuracies in his hospital records and former pediatrician\u2019s medical records.<\/li>\n<li>Keeping photo documentation of his TSWS journey, including when his symptoms were worsened by treatment. Labeling the treatment, class, dose and duration.<\/li>\n<li>Printing the drug information for every topical, oral and inhaled steroid he had previously been prescribed and highlighting every adverse reaction he had experienced and ADDING the ones not listed.<\/li>\n<li>Reporting adverse topical steroid cream and other drug reactions to the FDA (Food and Drug Administration). <a href=\"https:\/\/www.accessdata.fda.gov\/scripts\/medwatch\/index.cfm\">https:\/\/www.accessdata.fda.gov\/scripts\/medwatch\/index.cfm<\/a><\/li>\n<li>Establishing care with a pediatrician who included steroid allergy in my child\u2019s medical records.<\/li>\n<li>Establishing care with a naturopathic doctor to coordinate lab work and guide us in ways to treat the underlying cause of his condition.<\/li>\n<li>Screening dermatologists by phone to determine if they had alternative treatment options besides topical steroid creams and calling more than once to confirm before seeing an out of state dermatologist.<\/li>\n<li>Continuing care with an osteopathic doctor for craniosacral therapy in addition to our primary care physician.<\/li>\n<li>Continuing care with a Licensed Clinical Professional Counselor for individual therapy.<\/li>\n<li>Documenting every provider my child had seen, including upcoming appointments.<\/li>\n<li>Printing resources on TSWS to have available to share and to keep in a binder with my child\u2019s medical information.<\/li>\n<\/ul>\n<p><strong>These resources on TSW Syndrome may be helpful for you to share with your doctor:<\/strong><\/p>\n<p><a href=\"https:\/\/www.gov.uk\/government\/news\/long-term-continual-use-of-topical-steroids-linked-to-skin-withdrawal-side-effects?fbclid=IwAR09KIqqQUlf5T6kawdb7q-UZmXMwJa7t145YHWt_F9UvwDCa62915PEVk0\">Press release<\/a> from GOV.UK on steps towards TSW Syndrome awareness and prevention happening in the UK (Sep 2021)<\/p>\n<p>National Eczema Society and British Association of Dermatologists <a href=\"https:\/\/www.skinhealthinfo.org.uk\/national-eczema-society-and-british-association-of-dermatologists-joint-position-statement-on-topical-steroid-withdrawal\/\">joint position statement on Topical Steroid Withdrawal Syndrome<\/a> (Jan 2021)<\/p>\n<p>National Eczema Association (US) article, <a href=\"https:\/\/nationaleczema.org\/tsw-need-to-know\/\">\u201cTSW: What the Eczema Community Needs to Know Now\u201d<\/a> (Mar 2021)<\/p>\n<p>ITSAN website <a href=\"https:\/\/www.itsan.org\/us\/for-doctors\/\">\u201cFor Doctors\u201d<\/a> &#8211; works cited at end of page.<\/p>\n<p>BBC Wales TSW article, <a href=\"https:\/\/www.bbc.com\/news\/uk-wales-56407982\">\u201cTopical steroid addiction: Patients call for more support\u201d<\/a><\/p>\n<p>(Mar 2021)<\/p>\n<p><a href=\"https:\/\/www.npstudentmagazine.com\/cover-stories\/what-every-np-should-know-about-tsw\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">\u201cWhat Every NP Should Know About TSW\u201d<\/span><\/a><span style=\"font-weight: 400;\"> by ITSAN President Kathryn Tullos, RN, published in NP Student Magazine. (Oct 2021)<\/span><\/p>\n<p>The suggestions above are examples of ways to feel more prepared and proactive when you are caring for your child\u2019s intense health issues during TSWS. There are supportive doctors who will listen and learn if they are not familiar with TSWS.\u00a0 I was able to share my concerns with providers who understood my child\u2019s condition and their skill and support was healing for all of us. Stay hopeful and take time to take care of you.<\/p>\n<p>By Jolene MacDonald<\/p>\n<p>Updated <span style=\"font-weight: 400;\">Nov 2, 2021<\/span><\/p>\n<\/div><\/section><\/div>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8\">\n.flex_column.av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8 av_one_fourth  avia-builder-el-4  el_after_av_three_fourth  avia-builder-el-last  flex_column_div av-zero-column-padding  column-top-margin'     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_image-3a8da5600a293724ed9cb274f7760bb8\">\n.avia-image-container.av-av_image-3a8da5600a293724ed9cb274f7760bb8 img.avia_image{\nbox-shadow:none;\n}\n.avia-image-container.av-av_image-3a8da5600a293724ed9cb274f7760bb8 .av-image-caption-overlay-center{\ncolor:#ffffff;\n}\n<\/style>\n<div  class='avia-image-container av-av_image-3a8da5600a293724ed9cb274f7760bb8 av-styling- avia-align-center  avia-builder-el-5  avia-builder-el-no-sibling '   itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" ><div class=\"avia-image-container-inner\"><div class=\"avia-image-overlay-wrap\"><img decoding=\"async\" class='wp-image-5977 avia-img-lazy-loading-not-5977 avia_image ' src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road.jpg\" alt='' title=''  height=\"588\" width=\"587\"  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road.jpg 587w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-300x300.jpg 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-80x80.jpg 80w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-36x36.jpg 36w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-180x180.jpg 180w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-120x120.jpg 120w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/10\/road-450x451.jpg 450w\" sizes=\"(max-width: 587px) 100vw, 587px\" \/><\/div><\/div><\/div><\/div><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Supporting and Protecting Your Family: Your Right to Access Appropriate Medical Care For Your Child During TSWS<\/p>\n","protected":false},"author":1,"featured_media":5978,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-5975","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"_links":{"self":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/5975","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/comments?post=5975"}],"version-history":[{"count":6,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/5975\/revisions"}],"predecessor-version":[{"id":11005,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/5975\/revisions\/11005"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media\/5978"}],"wp:attachment":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media?parent=5975"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/categories?post=5975"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/tags?post=5975"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}