{"id":18,"date":"2026-05-07T10:40:15","date_gmt":"2026-05-07T10:40:15","guid":{"rendered":"https:\/\/cln2dsepatient-dev-001-g8fveycna6djd4g5.westus2-01.azurewebsites.net\/en-us\/?page_id=18"},"modified":"2026-09-02T13:16:41","modified_gmt":"2026-09-02T13:16:41","slug":"care","status":"publish","type":"page","link":"https:\/\/cln2.biomarin.com\/en-us\/care\/","title":{"rendered":"Care"},"content":{"rendered":"<div id=\"acf-block-6a3000b6c3c02\" class=\"hero hero-no-overlay\">\n            <div class=\"hero-background-image hero-background-image-desktop\" style=\"background-image: url(https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/hero.jpg?v=0.4);\"><\/div>\n\t    <div class=\"hero-background-image hero-background-image-mobile\" style=\"background-image: url(https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/hero_mobile_2.jpg?v=0.4);\"><\/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>How can I provide the best care for my child?\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-6a3016e9817cd\" class=\"block tabbed-content\">\n\t    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                                        <ul class=\"tabs\">\n                                                                                                                            <li><a href=\"#acf-block-6a3016e9817cd_0\">Provide the best care\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#acf-block-6a3016e9817cd_1\">Manage key symptoms\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#acf-block-6a3016e9817cd_2\">Incorporate physical therapy\n<\/a><\/li>\n                                                                                                                                                            <li><a href=\"#acf-block-6a3016e9817cd_3\">Maintain social activities\n<\/a><\/li>\n                                                                                    <\/ul>\n                                                                                                                                                <div class=\"box\">\n                                                                                            <div class=\"tab-content\" id=\"acf-block-6a3016e9817cd_0\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3><strong>Children with CLN2 disease face a range of symptoms and complications<\/strong><\/h3>\n<p>Caring for a child with CLN2 disease is complex and impacts the family in many ways. Managing complex medical needs, such as frequent appointments and various prescriptions can be challenging, even when the family has found a routine that works.<\/p>\n<p class=\"spl_margin\">Due to the range of symptoms and complications that children with CLN2 disease experience, experts agree that children should be under the care of a team of specialists. Talk to your doctor about which specialists they think should be included in your healthcare team.<sup>1<\/sup><\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/08\/Care-team.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <strong>Key source:<\/strong>\n<p>&nbsp;<\/p>\n<ol>\n<li>Williams RE, Adams HR, Blohm M, et al. Management strategies for CLN2 disease. Pediatric Neurology. 2017; 69:102-112.<\/li>\n<\/ol>\n                                                                                                                                                        <\/div>\n                                                                                                                            <div class=\"tab-content\" id=\"acf-block-6a3016e9817cd_1\" style=\"display:none;\">\n                                                                                                                                                                                                                                                                                                                        <div class=\"block split-content\">\n                                                    <div class=\"wrapper\">\n\t\t                                                <div class=\"inner-wrapper\">\n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                        <h3><strong>Seizure management<\/strong><\/h3>\n<p>Your doctor may use medications to manage seizures, one of the most common symptoms of CLN2 disease. There are many anti-epileptic drugs (AEDs) available to help manage seizures. However, some may be more effective than others in the treatment of seizures that are related to CLN2 disease. It is important to work closely with your doctor to find the right AEDs for your child.<sup>1<\/sup><\/p>\n<p>The goal of CLN2 disease seizure management should be to control seizures and minimize disabling or life-threatening seizures. Even with the use of AEDs, seizures will not likely go away completely and may still occur. Your doctor will work to find the medication(s) or dosage that best controls seizure activity with minimal side effects.<sup>1<\/sup><\/p>\n<p>Medication(s) should be reevaluated periodically. It is possible that medication(s) that worked well in the past may no longer work as well for your child. If a new symptom or sudden change occurs in your child\u2019s condition, talk to your doctor. Together, you can decide whether or not the new symptom or change in condition may be a reaction to the seizure medication.<sup>1<\/sup><\/p>\n                                                                                                                                                                                                            <\/div>\n                                                            \n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    \n                                                                            \n                                                                            \n                                                                            \n                                                                            <figure>\n                                                                                <div class=\"image\">\n                                                                                                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/Sketch-2.png?v=0.4\" alt=\"\" \/>                                                                                                                                                                    <\/div>\n                                                                                                                                                            <\/figure>\n                                                                                                                                                                                                            <\/div>\n                                                                                                                    <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <h3>Movement disorder management<\/h3>\n<p class=\"list_before\">Three common movement disorders associated with CLN2 disease are<sup>2,3<\/sup>:<\/p>\n<ol>\n<li>Myoclonus\u2014a sudden, uncontrolled twitching of muscles<\/li>\n<li>Dystonia\u2014uncontrolled muscle contractions<\/li>\n<li>Spasticity\u2014increased muscle tone or muscle stiffness that interferes with movement or speech<\/li>\n<\/ol>\n<p class=\"after_list\">Experts agree that treatment should focus on reducing how often your child experiences these symptoms, lessening the severity of these symptoms, and relieving any pain children may experience.<\/p>\n<p>Certain medications and physical therapy may be used to help manage movement disorders. Your doctor may even recommend support equipment (an ankle brace) or items designed to adjust body posture (special pillows, a neck support, or a vest). Talk to your doctor about any movement disorder symptoms your child may be experiencing. You can work together to find a treatment that will best address your child&#8217;s movement disorder symptoms.<\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                                                                                                                <div class=\"block split-content\">\n                                                    <div class=\"wrapper\">\n\t\t                                                <div class=\"inner-wrapper\">\n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                        <h3>Nutritional management<\/h3>\n<p class=\"list_before\">As CLN2 disease progresses, certain feeding and digestive issues may occur, including<sup>1<\/sup>:<\/p>\n<ul class=\"no-left\">\n<li>Swallowing difficulties<\/li>\n<li>Reflux (stomach acid flowing back into the food pipe, or esophagus)<\/li>\n<li>Constipation<\/li>\n<\/ul>\n<p class=\"after_list\">When caring for a child with CLN2 disease, it is important to keep them in good nutritional status, prevent deficiencies, and make sure they maintain an appropriate growth rate. Achieving these goals may require supplementing their diet with formula, vitamins, and minerals. To prevent constipation, it is important to include an appropriate amount of water and fiber in your child\u2019s diet, and consider medications that may help relieve this symptom.<sup>1<\/sup><\/p>\n<p class=\"after_list\">As swallowing difficulties increase, managing your child\u2019s secretions will become very important. Your doctor will recommend treatments and help you develop the right plan for your child.<sup>1<\/sup><\/p>\n<p class=\"after_list\">You and your doctor should discuss your child\u2019s nutritional status and any feeding abilities or restrictions you encounter. Together, you can identify potential issues and the various techniques that may address them, such as special diets and other methods of feeding.<\/p>\n                                                                                                                                                                                                            <\/div>\n                                                            \n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    \n                                                                            \n                                                                            \n                                                                            \n                                                                            <figure>\n                                                                                <div class=\"image\">\n                                                                                                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/Screenshot-2026-06-15-at-15.47.18-1.png?v=0.4\" alt=\"\" \/>                                                                                                                                                                    <\/div>\n                                                                                                                                                            <\/figure>\n                                                                                                                                                                                                            <\/div>\n                                                                                                                    <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <h3>Pain management<\/h3>\n<p class=\"list_before\">CLN2 disease includes a range of symptoms, some of which may cause pain. The most common causes of pain are<sup>1<\/sup>:<\/p>\n<ul class=\"no-left\">\n<li>Contractions\/dystonia<\/li>\n<li>Spasticity\/positioning problems<\/li>\n<li>GI symptoms such as reflux or constipation<\/li>\n<\/ul>\n<p class=\"after_list\">As parents or caregivers, you play an important role in pain assessment. Your ability to read your child\u2019s reactions and\/or signals can help your doctor find the cause of pain and treat painful symptoms appropriately. Sometimes, finding the cause of pain may take time and careful evaluation of different parts of the body may be required. Once the cause of pain has been identified, your doctor will provide recommendations for addressing pain.<sup>1<\/sup><\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <strong>Key sources:<\/strong>\n<p>&nbsp;<\/p>\n<ol>\n<li>Williams RE, Adams HR, Blohm M, et al. Management strategies for CLN2 disease. <em>Pediatric Neurology<\/em>. 2017; 69:102-112.<\/li>\n<li>Fietz M, AlSayed M, Burke D, et al. Diagnosis of neuronal ceroid lipofuscinosis type 2 (CLN2 disease): Expert recommendations for early detection and laboratory diagnosis. <em>Mol Genet Metab<\/em>. 2016;119(1-2):160-167.<\/li>\n<li>Malik K, Santucci K, Sremba L, Steenari M, Miele A, Demarest S, et al. <em>Neuronal Ceroid Lipofuscinoses Overview<\/em>. 2001 Oct 10 [updated 2025 May 29]. In: Adam MP, Bick S, Mirzaa GM, et al., editors. GeneReviews\u00ae [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2026.<\/li>\n<\/ol>\n                                                                                                                                                        <\/div>\n                                                                                                                            <div class=\"tab-content\" id=\"acf-block-6a3016e9817cd_2\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3><strong>Incorporate physical therapy to address specific skills and symptoms<\/strong><\/h3>\n<p class=\"spl_margin\">Experts agree that children with CLN2 disease can benefit from physical therapy that has been adapted for the specific challenges they face. Talk to your doctor about developing a physical therapy plan specialized for CLN2 disease. Physical and occupational therapy should be started early to help your child maintain abilities for as long as possible.<\/p>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                                                                                                                <div class=\"block split-content\">\n                                                    <div class=\"wrapper\">\n\t\t                                                <div class=\"inner-wrapper\">\n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                        <h4><strong>Types of therapy<sup>1<\/sup><\/strong><\/h4>\n<ul class=\"no-left\">\n<li>Physical\u2014training that promotes comfort, extends independence through the use of therapy chairs (exercise their ability to sit upright) and standing devices (support muscle function and the ability to stand). See below for additional devices. Caregivers can learn exercises and positioning techniques that can be integrated into daily routines<\/li>\n<li>Occupational\u2014exercises to help children maintain skills and activities of daily living (for example, feeding)<\/li>\n<li>Speech\u2014early development of alternative communication methods, like symbols and gestures, can help prolong interaction after speech is lost<\/li>\n<li>Holistic\u2014addresses the whole person (body, mind, and spirit) to decrease possible anxiety, pain, and boredom. Examples of this therapy include music classes and swimming<\/li>\n<\/ul>\n                                                                                                                                                                                                            <\/div>\n                                                            \n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                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                                                               <h4>Adaptive devices that can be useful for children include<sup>1<\/sup>:<\/h4>\n<ul class=\"no-left\">\n<li>Therapy chairs<\/li>\n<li>Walking and standing devices<\/li>\n<li>Braces<\/li>\n<li>Ramps and other in-home equipment<\/li>\n<\/ul>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <strong>Key source:<\/strong>\n<p>&nbsp;<\/p>\n<ol>\n<li>Williams RE, Adams HR, Blohm M, et al. Management strategies for CLN2 disease. <em>Pediatric Neurology<\/em>. 2017; 69:102-112.<\/li>\n<\/ol>\n                                                                                                                                                        <\/div>\n                                                                                                                            <div class=\"tab-content\" id=\"acf-block-6a3016e9817cd_3\" style=\"display:none;\">\n                                                                                                                                                                                                                        <h3>Maintain regular educational and social interaction<\/h3>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                                                                                                                <div class=\"block split-content\">\n                                                    <div class=\"wrapper\">\n\t\t                                                <div class=\"inner-wrapper\">\n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                        <h4>Educational and social strategies can positively impact life for children with CLN2 disease<sup>1<\/sup><\/h4>\n<p class=\"spl_margin\">Maintaining regular school attendance is extremely valuable for children with CLN2 disease and their families. Children and their families benefit from the social interaction and the continued involvement in their community.<\/p>\n<p class=\"spl_margin\">It may become difficult to communicate with your child as language, motor skills, and vision decline. To help you continue communicating with your child, experts suggest early development (when possible) and use of alternative communication methods like symbols and gestures.<\/p>\n                                                                                                                                                                                                            <\/div>\n                                                            \n                                                                                                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                                                                                                                                       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class=\"bdsraheading\">The BDSRA is dedicated to funding research for treatments and cures, and providing family support services.<\/p>\n<p><a class=\"bdsralink bdsralink-external\" href=\"https:\/\/bdsrafoundation.org\/\" target=\"_blank\" rel=\"noopener\">Visit the Batten Disease Support and Research Association (BDSRA) to learn more about CLN2 disease \u203a<\/a><\/p>\n                                                                                                                                                                                                            <\/div>\n                                                                                                                    <\/div>\n                                                    <\/div>\n                                                <\/div>\n                                                                                                                                                                                                                                                                                                                                                                                                                                \n                                                \n                                                \n                                                \n                                                <figure>\n                                                    <div class=\"image\">\n                                                                                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/cln2.biomarin.com\/en-us\/wp-content\/uploads\/sites\/2\/2026\/06\/divide-2.png?v=0.4\" alt=\"\" \/>                                                                                                            <\/div>\n                                                                                                    <\/figure>\n                                                                                                                                                                                                                                <strong>Key sources:<\/strong>\n<p>&nbsp;<\/p>\n<ol>\n<li>Williams RE, Adams HR, Blohm M, et al. Management strategies for CLN2 disease. Pediatric Neurology. 2017; 69:102-112.<\/li>\n<\/ol>\n                                                                                                                                                        <\/div>\n                                                                                    <\/div>\n                                    \t\t\t\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"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-18","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>BioMarin | CLN2 Family | Patient Care<\/title>\n<meta name=\"description\" content=\"Find out how you can navigate the complexities of 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