{"id":46794,"date":"2022-08-31T14:29:18","date_gmt":"2022-08-31T13:29:18","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/suddenly-epilepsy\/"},"modified":"2026-09-16T12:26:10","modified_gmt":"2026-09-16T11:26:10","slug":"suddenly-epilepsy","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/en-us\/suddenly-epilepsy\/","title":{"rendered":"&#8220;Suddenly Epilepsy&#8221;"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_0 et_pb_row et_block_row\"><div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_flex_module\"><div class=\"et_pb_text_inner\"><p><strong>MERRY CHRISTMAS\u2026. we will not give up<\/strong><strong>\ud83d\ude0a<\/strong><\/p>\n<p>...there are times when children, and also those affected by epilepsy, do not want to know anything about their illness. They don't want to know anything about their parents and are, as they say in Bavaria and Austria, \"Zwiderwurzn\". (you say [\u02c8t\u0361svi\u02d0d\u0250\u02ccv\u028a\u0281t\u0361sn\u0329] ). And then you have them put on a NightWatch every evening before they go to sleep (\u201ceven if it looks pretty chic for a health product\u201d \ud83d\ude09). Well - congratulations! (but please: don\u2019t give up!)<\/p>\n<p>But now it's Christmas time, time for some peaceful and joyful hours, time to relax a bit and say THANK YOU, hopefully. The following story is from me for all committed people in the field of epilepsy (female, male, diverse, etc.) such as those affected by epilepsy, parents, carers, doctors, researchers, health insurance companies, medical device manufacturers, bosses, employees, pharmaceutical companies, advice centers, volunteers, foundations, friends, etc.: You are wonderful and great - thanks to you, help and support, progress happens every day and sometimes small and big miracles happen (which we all need).<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"et_pb_section_1 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_1 et_pb_row et_block_row\"><div class=\"et_pb_column_1 et_pb_column et_pb_column_1_2 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_flex_module\"><div class=\"et_pb_text_inner\"><p>When Elen came into the world, she was at first sight a healthy baby. However, in her fifth month, she suffered a prolonged epileptic seizure that lasted more than 40 minutes. After several more seizures and hospitalisations, genetic tests revealed that she suffered from a rare and severe form of gene epilepsy - Dravet syndrome, also called <a href=\"https:\/\/en.wikipedia.org\/wiki\/Dravet_syndrome\" target=\"_blank\" rel=\"noopener\">Severe Myoclonic Epilepsy of Infancy (SMEI)<\/a>. Although the disease is genetic, she did not inherit it from either parent; it was just a \"gene fault\" early in pregnancy. Dravet syndrome is also associated with many other associated diagnoses, such as delayed psychomotor development, hypotonia, attention deficit disorder, unsteady walking, etc. Although Elen looks like a healthy four-year-old girl, she has many limitations in her life. For instance, she has to follow a strict and regular regime, be under constant supervision, stay with the children in the playground, not have too much fun, and not go outside in summer when it is hot outside. All this can lead to a seizure with unconsciousness, which can further delay her development.<\/p>\n<p>Unfortunately, despite all precautions and four different anti-epileptic drugs, Elen has a more significant seizure every week. She can also have seizures during sleep, so we are happy to use NightWatch now.<\/p>\n<p>All these conditions affect our whole family, who must adapt their lives to Elen's needs. Elen cannot attend kindergarten because she tires easily and often sleeps during the day. Despite all the complications, Elen is a very smart and bright four-year-old girl who energises the whole family with her tremendous strength. As her parents, we are happy she has shown us a new path.<\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_2 et_pb_column et_pb_column_1_2 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_0 et_pb_image et_pb_module et_flex_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/04\/NightWatch_Elen_arm-module.jpg\" title=\"NightWatch_Elen_arm-module\" width=\"960\" height=\"1280\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/04\/NightWatch_Elen_arm-module.jpg 960w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/04\/NightWatch_Elen_arm-module-480x640.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 960px, 100vw\" class=\"wp-image-35404\" \/><\/span><\/div><\/div><\/div><\/div><div class=\"et_pb_section_2 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_2 et_pb_row et_pb_row_1-4_3-4 et_block_row et_block_row_1-4_3-4\"><div class=\"et_pb_column_3 et_pb_column et_pb_column_1_4 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_1 et_pb_image et_pb_module et_flex_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2021\/10\/info.svg\" title=\"info\" width=\"92\" height=\"92\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2021\/10\/info.svg 92w\" sizes=\"(min-width: 0px) and (max-width: 0px) 0px, (min-width: 1px) 92px, 100vw\" class=\"wp-image-26012\" \/><\/span><\/div><\/div><div class=\"et_pb_column_4 et_pb_column et_pb_column_3_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_2 et_pb_text et_pb_bg_layout_light et_pb_module et_flex_module\"><div class=\"et_pb_text_inner\" data-et-mv-hidden-tablet=\"true\" data-et-mv-hidden-phone=\"true\"><p><em>Author's note: according to the ILAE, West syndrome has been recognized as a childhood epileptic syndrome since its first appearance (1841) (ICD-10 classification: G40. 4, other generalized epilepsy and epileptic syndromes) and is considered a paradigm of an epileptic syndrome leading to neurological deterioration (epileptic encephalopathy) and has been the subject of numerous studies aimed at understanding the complex relationships between an epileptic disorder and neurodevelopment. BNS refers to \"flash seizures, nodding seizures, and salaam seizures.\"<\/em><\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Julian is 10 years old and he&#8217;s a bright boy who likes to play the guitar and loves computer games like all young boys.<\/p>\n","protected":false},"author":3,"featured_media":46795,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[74],"tags":[],"class_list":["post-46794","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized-en-us"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Suddenly Epilepsy | A NightWatch Story<\/title>\n<meta name=\"description\" content=\"Julian is 10 years old and he&#039;s a bright boy who likes to play the guitar and loves computer games like all young boys.\" 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