{"id":20633,"date":"2014-09-07T23:00:59","date_gmt":"2014-09-08T05:00:59","guid":{"rendered":"http:\/\/www.globaldownsyndrome.org\/?p=20633"},"modified":"2014-09-04T13:28:54","modified_gmt":"2014-09-04T19:28:54","slug":"sie-center-for-down-syndrome-takes-on-infantile-spasms","status":"publish","type":"post","link":"https:\/\/www.globaldownsyndrome.org\/hi\/sie-center-for-down-syndrome-takes-on-infantile-spasms\/","title":{"rendered":"Infantile Spasms in Children with Down Syndrome: Investigating a Rare but Serious Condition"},"content":{"rendered":"

Infantile spasms can occur in children with Down syndrome and typical children alike. Ongoing research at the \u0905\u0928\u094d\u0928\u093e \u0914\u0930 \u091c\u0949\u0928 \u091c\u0947. \u0938\u0940 \u0938\u0947\u0902\u091f\u0930 \u092b\u0949\u0930 \u0921\u093e\u0909\u0928 \u0938\u093f\u0902\u0921\u094d\u0930\u094b\u092e<\/a> at Children\u2019s Hospital Colorado examines the relationship between infantile spasms and Down syndrome in hopes of improving diagnosis and treatment.<\/h2>\n

\"\"The spasms, characterized by a stiffening of the extremities and an arching or folding at the waist, are also known as West\u2019s syndrome after the first known description of the condition\u2019s symptoms \u2014 a letter penned by Dr. W. J. West describing his son\u2019s attacks. Dr. West\u2019s son would heave forward from the waist for a moment, then return to an upright position. These episodes would occur in clusters of as many as 20 spasms in a row in rapid succession.<\/p>\n

While infantile spasms are serious, they are not common. Estimates suggest 1 to 3 percent of children with Down syndrome will develop infantile spasms, while the highest estimate places that figure around 13 percent.<\/p>\n

Why So Serious?<\/h2>\n

Children with infantile spasms stop progressing toward developmental milestones and may lose motor skills they have already mastered, such as sitting up or crawling. They may experience cognitive and speech regression as well.<\/p>\n

Unaddressed infantile spasms may permanently impair functionality and impact children\u2019s abilities \u2014 a serious concern for children with Down syndrome who may already have developmental delays.<\/p>\n

\u201cIt is imperative to diagnose infantile spasms early to promote early appropriate treatment and the best possible outcome,\u201d said Dee Daniels<\/a>, R.N., C.P.N.P., Program Director at the Sie Center. <\/p>\n

The Infantile Spasms Research Study<\/h2>\n
  
Dee Daniels & Dr. Tim Benke<\/div>\n

Currently, the most effective treatments for infantile spasms are pharmaceutical.<\/p>\n

\u201cOnce, working with children who have Down syndrome and infantile spasms, I noticed that children with Down syndrome were more responsive to treatment, and many times, their infantile spasms resolved quickly,\u201d said Daniels, who was previously a nurse practitioner on the epilepsy team in neurology at Children\u2019s Hospital Colorado<\/a>. \u201cThey also often did not go on to have other seizure types, which was not always the case in typical children who had infantile spasms.\u201d<\/p>\n

In the first phase of the Improved Outcome of Infantile Seizures in Down Syndrome Population research project, researchers at the Sie Center are examining the records of 28 patients with Down syndrome and infantile spasms who were cared for at Children\u2019s Hospital Colorado between April 2005 and April 2013. Thus far, researchers have examined the response to various anticonvulsants \u2014 including adrenocorticotropic hormone (ACTH) and vigabatrin \u2014 to determine their effectiveness.<\/p>\n

The research is planned to continue as a 10-year longitudinal study. <\/p>\n

\u201cWhile ACTH treatment for infantile spasms is effective, it can be potentially costly and time consuming. Each type of treatment, ACTH or vigabatrin, has unique side effects,\u201d said Tim Benke<\/a>, M.D., Ph.D., Director of Research at the Neuroscience Institute at Children\u2019s Hospital Colorado, and Associate Professor of Pediatrics, Neurology, Otolaryngology, and Pharmacology at the University of Colorado School of Medicine. \u201cWe want to provide clear information and guidelines for families so they can make informed decisions about what\u2019s right for their children.\u201d<\/p>\n

Spotting the Signs<\/h2>\n

\"\"Daniels and Dr. Benke also hope this research will help to increase awareness of infantile spasms in children with Down syndrome, so those who are experiencing this condition will be identified early and treated appropriately to improve their medical and developmental outcomes.<\/p>\n

\u201cSometimes children with Down syndrome who are experiencing infantile spasms are not always recognized early and then treatment is delayed,\u201d Daniels said. \u201cContributing factors to this missed diagnosis can be that children with Down syndrome already have a range of development delays prior to diagnosis as well as low muscle tone and other medical issues. Subtle early symptoms are often attributed to Down syndrome, hence the diagnosis of infantile spasms is delayed or missed. Raising the awareness of the child\u2019s healthcare providers, parents, and caretakers about the risk and presenting features of infantile spasms in children with Down syndrome is imperative to improving outcomes.\u201d<\/p>\n

The Sie Center was founded in 2010 with the support of the Global Down Syndrome Foundation. It serves as a hub of care and research for children with Down syndrome and has the added benefit of being connected to Children\u2019s Hospital Colorado, a top 10 children\u2019s hospital. For more information about the work being done at the Sie Center, visit siecenter.org<\/a>.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

Infantile spasms can occur in children with Down syndrome and typical children alike. Ongoing research at the Anna and John J. Sie Center for Down Syndrome at Children\u2019s Hospital Colorado examines the relationship between infantile spasms and Down syndrome in hopes of improving diagnosis and treatment. The spasms, characterized by a stiffening of the extremities […]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"ngg_post_thumbnail":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[62],"tags":[],"class_list":["post-20633","post","type-post","status-publish","format-standard","hentry","category-blog"],"acf":[],"yoast_head":"\nInfantile Spasms in Children with Down Syndrome: Investigating a Rare but Serious Condition | Global Down Syndrome Foundation<\/title>\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.globaldownsyndrome.org\/hi\/sie-center-for-down-syndrome-takes-on-infantile-spasms\/\" \/>\n<meta property=\"og:locale\" content=\"hi_IN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Infantile Spasms in Children with Down Syndrome: Investigating a Rare but Serious Condition | Global Down Syndrome Foundation\" \/>\n<meta property=\"og:description\" content=\"Infantile spasms can occur in children with Down syndrome and typical children alike. Ongoing research at the Anna and John J. Sie Center for Down Syndrome at Children\u2019s Hospital Colorado examines the relationship between infantile spasms and Down syndrome in hopes of improving diagnosis and treatment. 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The grant will fund three ambitious areas: (1) the purchase and application of important diagnostic and\u2026","rel":"","context":"In "Press Releases"","block_context":{"text":"Press Releases","link":"https:\/\/www.globaldownsyndrome.org\/hi\/category\/press-releases\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2023\/02\/MicrosoftTeams-image-6-scaled.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":154503,"url":"https:\/\/www.globaldownsyndrome.org\/hi\/crnic-institute-awarded-anschutz-acceleration-initiative-grant-for-pioneering-research-aimed-at-improving-the-health-of-children-with-down-syndrome\/","url_meta":{"origin":20633,"position":2},"title":"Crnic Institute Awarded Anschutz Acceleration Initiative Grant for Pioneering Research Aimed at Improving the Health of Children with Down Syndrome","author":"Global Down Syndrome Foundation","date":"\u091c\u0928\u0935\u0930\u0940 18, 2024","format":false,"excerpt":"Denver, CO, Jan 18, 2024 (GLOBE NEWSWIRE) --\u00a0Today, the\u00a0Global Down Syndrome Foundation\u00a0(GLOBAL) announced that Dr. Joaqu\u00edn Espinosa, leader of its Affiliate, the\u00a0Linda Crnic Institute for Down Syndrome\u00a0(Crnic Institute) at the University of Colorado Anschutz Medical Campus, was awarded an\u00a0Anschutz Acceleration Initiative\u00a0(AAI) grant that will fund a pioneering clinical trial aimed\u2026","rel":"","context":"In "Press Releases"","block_context":{"text":"Press Releases","link":"https:\/\/www.globaldownsyndrome.org\/hi\/category\/press-releases\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/01\/Copy-of-Crnic-Grant-Cutout-2.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/01\/Copy-of-Crnic-Grant-Cutout-2.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/01\/Copy-of-Crnic-Grant-Cutout-2.jpg?resize=525%2C300&ssl=1 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Releases","link":"https:\/\/www.globaldownsyndrome.org\/hi\/category\/press-releases\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/08\/Picture-for-release.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/08\/Picture-for-release.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2024\/08\/Picture-for-release.png?resize=525%2C300&ssl=1 1.5x"},"classes":[]},{"id":161220,"url":"https:\/\/www.globaldownsyndrome.org\/hi\/global-dsdn-multi-year-collaboration-agreement\/","url_meta":{"origin":20633,"position":4},"title":"Global Down Syndrome Foundation & Down Syndrome Diagnosis Network Sign Multi-Year Collaboration Agreement","author":"Palmer Brooks","date":"\u091c\u0942\u0928 3, 2025","format":false,"excerpt":"\u00a0 Denver, Stillwater, Minn. \u2013June 3, 2025 \u2013 Today, Global Down Syndrome Foundation\u00a0(GLOBAL) and Down Syndrome Diagnosis Network (DSDN) are proud to announce a multi-year collaboration agreement to educate \u00a0moms of children with Down syndrome \u2013 particularly those in the early years \u2013 about important medical care resources and research\u2026","rel":"","context":"In "Blog"","block_context":{"text":"Blog","link":"https:\/\/www.globaldownsyndrome.org\/hi\/category\/blog\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/www.globaldownsyndrome.org\/wp-content\/uploads\/2025\/06\/IMG_6910-scaled-1.jpeg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":149596,"url":"https:\/\/www.globaldownsyndrome.org\/hi\/new-nih-funded-study-will-investigate-a-debilitating-condition-known-as-down-syndrome-regression-disorder-dsrd\/","url_meta":{"origin":20633,"position":5},"title":"New NIH-funded Study Will Investigate a Debilitating Condition Known as Down Syndrome Regression Disorder (DSRD)","author":"Global Down Syndrome Foundation","date":"\u0938\u093f\u0924\u092e\u094d\u092c\u0930 29, 2022","format":false,"excerpt":"Denver, CO, September 29, 2022 - Scientists and physicians from the Linda Crnic Institute for Down Syndrome at the University of Colorado, Children\u2019s Hospital Colorado (CHCO), and Children\u2019s Hospital Los Angeles (CHLA) have teamed up to identify effective treatments for persons suffering from Down Syndrome Regression Disorder (DSRD). 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