{"id":50,"date":"2023-02-22T12:07:03","date_gmt":"2023-02-22T12:07:03","guid":{"rendered":"https:\/\/pkudsepatient-dev-001.azurewebsites.net\/en-gb\/?page_id=50"},"modified":"2024-08-14T11:08:35","modified_gmt":"2024-08-14T11:08:35","slug":"planning-for-lifetime-management","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/en-gb\/planning-for-lifetime-management\/","title":{"rendered":"Planning for Lifetime Management"},"content":{"rendered":"<div id=\"acf-block-63f77379736bb\" class=\"hero hero-no-overlay\">\n            <div class=\"hero-background-image hero-background-image-desktop\" style=\"background-image: url(https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/03\/Group-110-scaled-e1678703759379-2000x435.jpg);\"><\/div>\n\t    <div class=\"hero-background-image hero-background-image-mobile\" style=\"background-image: url(https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/02\/pku-balloon-hero-mobile-830x800.jpg);\"><\/div>\n    \t<div class=\"overlay\"><\/div>\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"hero-content\">\n\t\t\t    \t\t\t\t\t\t\t\t\t\t\t\t    <h1>Planning for Lifetime Management\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t\n                <p class=\"inline-buttons\">\n                                                        <\/p>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n<div id=\"acf-block-63f7737973844\" class=\"block wrapped-content block-tight-bottom\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-63f7737973936\" class=\"block-wysiwyg\">\n            <h2>Develop healthy habits early on for lifelong PKU management.<\/h2>\n<p>PKU should be managed as early as possible in a child\u2019s life. Start lifelong management with support from a PKU clinic and have frequent, honest conversations. Your clinical care team will teach you the recommended ways to manage PKU.<\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f77379752e4\" class=\"block split-content equal-bias bottom-border\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block first-block\">\n                                                                                                                                                                                                                                                                                    \n                                    \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-rounded\">\n                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/04\/Foodyoueat.png?v=0.85\" alt=\"Vegetables on a table top\" \/>                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block second-block\">\n                                                                                                <h2>With PKU, the foods you eat directly impact the way you think and feel.<\/h2>\n<p>Phenylalanine (Phe) is present in almost all natural protein-containing foods. Your clinical care team will help you determine how much Phe should be part of your diet.<\/p>\n<p>Learn new ways to cook for a person with PKU. Change up your PKU-friendly menu with these recipes.<\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                                                        <p><a class=\"button button-arrow\" href=\"https:\/\/pku.biomarin.com\/en-gb\/recipes\/\" target=\"_self\">PKU-friendly recipes<\/a><\/p>\n                                                                                                                        <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-642b1f77d6d9d\" class=\"block boxed-content top-border boxed-content-no-bg\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\">\n\t\t\t\t                    <h2>Help prepare your child to manage PKU in their future.\n<\/h2>\n                \t\t\t\t\n<div id=\"acf-block-642b1f77d7112\" class=\"image-text-block content-align-bottom bottom-border\">\n            <div class=\"image-block medium\">\n            <figure>\n                <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/04\/step1_v2.png?v=0.85\" alt=\"Step 1\" \/>                <\/div>\n            <\/figure>\n        <\/div>\n        <div class=\"content-block\">\n                    <h3><strong>I do; you watch<\/strong>\n<\/h3>\n                            <ul>\n<li>Explain <em>everything<\/em> you do and why it is important<\/li>\n<li>Demonstrate the order of activities and ensure your child is watching<\/li>\n<\/ul>\n                    <\/div>\n<\/div>\n\n<div id=\"acf-block-642b1f77d7185\" class=\"image-text-block content-align-bottom bottom-border\">\n            <div class=\"image-block medium\">\n            <figure>\n                <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/04\/step2_v2.png?v=0.85\" alt=\"Step 2\" \/>                <\/div>\n            <\/figure>\n        <\/div>\n        <div class=\"content-block\">\n                    <h3><strong>I do; you help<\/strong>\n<\/h3>\n                            <ul>\n<li>Work together with your child and help them along as needed<\/li>\n<li>Ask questions to see if your child knows why this routine is important<\/li>\n<\/ul>\n                    <\/div>\n<\/div>\n\n<div id=\"acf-block-642b1f77d71e3\" class=\"image-text-block content-align-bottom bottom-border\">\n            <div class=\"image-block medium\">\n            <figure>\n                <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/04\/step3_v2.png?v=0.85\" alt=\"Step 3\" \/>                <\/div>\n            <\/figure>\n        <\/div>\n        <div class=\"content-block\">\n                    <h3><strong>You do; I help<\/strong>\n<\/h3>\n                            <ul>\n<li>Set small, achievable goals, and try to make it fun to form these habits<\/li>\n<li>Step in with support when needed, and remind your child why this routine is so important<\/li>\n<\/ul>\n                    <\/div>\n<\/div>\n\n<div id=\"acf-block-642b1f77d725f\" class=\"image-text-block content-align-center bottom-border\">\n            <div class=\"image-block medium\">\n            <figure>\n                <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/04\/step4_v3.png?v=0.85\" alt=\"Step 4\" \/>                <\/div>\n            <\/figure>\n        <\/div>\n        <div class=\"content-block\">\n                    <h3><strong>You do; I watch<\/strong>\n<\/h3>\n                            <ul>\n<li>Set larger goals for the future, and allow your child to take charge of their routine<\/li>\n<li>Help them along, but try not to step in too early. Making mistakes will help them learn and prepare for their future<\/li>\n<\/ul>\n                    <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-64fe12511900d\" class=\"block split-content equal-bias bottom-border\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block first-block\">\n                                                                                                <h2>&#8220;Of course I was completely frightened, I was confused<br \/>\nbecause I was completely<br \/>\nunaware of what PKU was.&#8221;<\/h2>\n<p>Discover the experience of a mother and daughter in dealing with initial diagnosis and growing up with PKU.<\/p>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block second-block\">\n                                                                                                                                                                                                                                                <div class=\"video-poster\">\n\t\t\t                            <a class=\"modal-video permitted\" href=\"https:\/\/player.vimeo.com\/video\/665580489\" style=\"background-image: url(https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2023\/09\/vlcsnap-2023-09-10-19h58m42s744.png?v=0.85);\">Play<\/a>\n\t\t                            <\/div> \n                                    \n                                                                                                                    \n                                                                                                                                                   \n                                    \n\t\t                                                                            <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-64fe13a22c4cf\" class=\"block boxed-content boxed-content-white\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\">\n\t\t\t\t\t\t\t\t\n<div id=\"acf-block-64fe13a22c936\" class=\"image-text-block content-align-center block-zero-top block-zero-bottom\">\n            <div class=\"image-block medium\">\n            <figure>\n                <div class=\"image image-rounded\">\n                    <img decoding=\"async\" class=\"\" src=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2024\/04\/lightbulb_icon_new.svg\" alt=\"\" \/>                <\/div>\n            <\/figure>\n        <\/div>\n        <div class=\"content-block\">\n                    <h3>Tips for talking to your care team. \n<\/h3>\n                                                    <p><a class=\"button button-download\" href=\"https:\/\/pku.biomarin.com\/en-gb\/wp-content\/uploads\/sites\/4\/2024\/08\/73033161-BM-PKU_Doctor-Discussion-Guide-A4-AW.pdf?v=0.85\" target=\"_blank\">Download guide<\/a><\/p>\n                        <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-50","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Planning for Lifetime Management - BioMarin PKU DSE Patient EN-GB<\/title>\n<meta name=\"description\" content=\"Phenylketonuria (PKU) should be managed as early as possible in a child&#039;s life. 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