{"id":2036,"date":"2021-03-18T11:35:00","date_gmt":"2021-03-18T15:35:00","guid":{"rendered":"https:\/\/nutriciametabolics.expressodesign.com\/?p=2036"},"modified":"2025-05-15T11:16:02","modified_gmt":"2025-05-15T15:16:02","slug":"blog-learning-about-pku-through-baby-aspen","status":"publish","type":"post","link":"https:\/\/www.nutriciametabolics.com\/en-us\/blog\/learning-about-pku-through-baby-aspen\/","title":{"rendered":"A family&#8217;s journey in learning about PKU through baby Aspen"},"content":{"rendered":"\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image alignwide size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"398\" src=\"https:\/\/www.nutriciametabolics.com\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-and-family-blog.jpg\" alt=\"PKU family\" class=\"wp-image-4273\" srcset=\"https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-and-family-blog.jpg 800w, https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-and-family-blog-300x149.jpg 300w, https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-and-family-blog-768x382.jpg 768w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p>&#8220;When I got the call, I couldn\u2019t process what I was hearing. It was so hard.\u201d<\/p>\n\n\n\n<p>Lacy thinks back to the moment when she learned that her second child, a baby girl named Aspen, was diagnosed with Phenylketonuria (PKU).<\/p>\n\n\n\n<p>PKU is a rare inherited metabolic disorder that means a person must avoid foods naturally high in protein (such as meat, eggs, and even bread). This is done to avoid a build-up of a substance known as phenylalanine in the brain, which is harmful to people with PKU.<\/p>\n\n\n\n<p>Lacy, her husband Darryl, Aspen (now 2 years old), and their other child, Finn (6), live about an hour from New Orleans, Louisiana. Caring for a little one with PKU can be tough, as new parents and families like Lacy\u2019s will know.<\/p>\n\n\n\n<p>\u201cYou can\u2019t wing it,\u201d Lacy says, since the diet must be closely monitored to support the baby\u2019s proper growth and development. Darryl and even brother Finn are involved in Aspen\u2019s care, looking after her to see she has the right foods and consumes her PKU-appropriate protein. As part of the PKU diet plan set out by her healthcare professional, Aspen gets essential nutrients and protein by drinking her PKU formula.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\u201cIt\u2019s almost like Darryl, Finn, and I also have PKU for the first five years [of Aspen\u2019s life],\u201d shares Lacy. \u201cPKU is a family thing.\u201d<\/p>\n<\/blockquote>\n\n\n\n<p>Lacy and the family are especially focused on making sure Aspen gets the proper amount of formula to help her grow and develop. From birth up until now, Aspen drank Nutricia\u2019s <a href=\"\/en-us\/shop\/pku-periflex-early-years\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>PKU Periflex\u00ae Early Years<\/strong><\/a>, which her metabolic healthcare team recommended. This formula is complete with DHA &amp; ARA for brain development and prebiotics, which support immune and digestive health.<\/p>\n\n\n\n<p>Learn more about Early Years metabolic infant formulas <a href=\"\/en-us\/wp-content\/uploads\/2021\/02\/EarlyYearsCaregiverGuide22.pdf\">here<\/a>.<\/p>\n\n\n\n<p>Aspen now drinks <strong><a href=\"\/en-us\/shop\/periflex-junior-plus\" target=\"_blank\" rel=\"noreferrer noopener\">PKU Periflex Junior Plus<\/a><\/strong> as her next-stage formula.<\/p>\n\n\n\n<p>\u201cI try not to make drinking formula a job for Aspen. I leave it out for her and let her have it in her own time.\u201d This is one of Lacy\u2019s tips as far as encouraging a positive relationship between children and PKU formula.<\/p>\n\n\n\n<p>PKU can feel isolating for Lacy and the family since not many other people in their community know what PKU is or how to care for Aspen. So, to connect to other parents with children with PKU, Lacy turned to social media.<\/p>\n\n\n\n<p>She connected with families all over the world, from Ireland to Canada, and she found a fellow mom named Kellie from Connecticut. Lacy and Kellie bonded over the realities of daily life with a new baby with PKU. According to Lacy, Kellie has been \u201ca life saver.\u201d<\/p>\n\n\n\n<figure class=\"wp-block-image alignwide size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"900\" height=\"634\" src=\"https:\/\/www.nutriciametabolics.com\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-blog.jpg\" alt=\"PKU infant\" class=\"wp-image-4274\" srcset=\"https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-blog.jpg 900w, https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-blog-300x211.jpg 300w, https:\/\/www.nutriciametabolics.com\/en-us\/wp-content\/uploads\/2020\/11\/nutricia-metabolics-consumer-aspen-blog-768x541.jpg 768w\" sizes=\"auto, (max-width: 900px) 100vw, 900px\" \/><\/figure>\n\n\n\n<p>\u201cWe\u2019ve overcome a lot,\u201d shares Lacy, thinking about how she and her family have learned more day-by-day on how to best nurture Aspen. She knows what the high\u2019s and low\u2019s are like, and that\u2019s why she wants to be involved with the PKU community. If she notices a new parent on one of the Facebook support groups, she immediately reaches out to them via private messenger.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\u201cIf I can help that person through even one minute, I will. I\u2019ll write to them.\u201d<\/p>\n<\/blockquote>\n\n\n\n<p>It\u2019s the spirit of \u201cin this together\u201d that has helped Lacy and her family to where they are today and what she hopes to see throughout the broader PKU community.<\/p>\n\n\n\n<p>We do our best to provide support and education for families like Lacy\u2019s. Take a look at our <strong><a href=\"\/en-us\/metabolic-disorders-education-support\/\" target=\"_blank\" rel=\"noreferrer noopener\">Education and Support<\/a> <\/strong>section for disorder-specific videos, booklets, and more. We\u2019re here for you and your family.<\/p>\n\n\n\n<p>If you are a new parent and are interested in learning more about the metabolic formula Aspen used as an infant, check out our <strong><a href=\"\/en-us\/blog\/early-years\/\" target=\"_blank\" rel=\"noreferrer noopener\">Early Years blog<\/a><\/strong>, or ask your metabolic healthcare team.\u00a0<\/p>\n\n\n\n<hr class=\"wp-block-separator has-css-opacity is-style-wide\"\/>\n\n\n\n<p class=\"has-small-font-size\">PKU Periflex Early Years and PKU Periflex Junior Plus are medical foods for the dietary management of Phenylketonuria and must be used under medical supervision.<\/p>\n\n\n\n<p class=\"has-small-font-size\">This blog is brought to you by Nutricia North America.<br>\u00a9 Nutricia North America 2020<\/p>\n","protected":false},"excerpt":{"rendered":"<p>&#8220;When I got the call, I couldn\u2019t process what I was hearing. It was so hard.\u201d Lacy thinks back to the moment when she learned that her second child, a baby girl named Aspen, was diagnosed with Phenylketonuria (PKU). PKU is a rare inherited metabolic disorder that means a person must avoid foods naturally high [&hellip;]<\/p>\n","protected":false},"author":1000,"featured_media":4276,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"wprm-recipe-roundup-name":"","wprm-recipe-roundup-description":"","site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center 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