{"id":32248,"date":"2022-09-20T08:55:04","date_gmt":"2022-09-20T07:55:04","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/?p=32248"},"modified":"2022-09-20T11:39:07","modified_gmt":"2022-09-20T10:39:07","slug":"epilepsie-soudaine","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/fr\/epilepsie-soudaine\/","title":{"rendered":"\u00ab \u00c9pilepsie soudaine \u00bb"},"content":{"rendered":"\n\n\n[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_module=\u00a0\u00bb32198″ saved_tabs=\u00a0\u00bball\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]

La famille Eberwein de Reutlingen, Allemagne<\/strong>
<\/strong>Julian a 10 ans. C\u2019est un gar\u00e7on brillant qui aime jouer de la guitare et faire des jeux \u00e0 l\u2019ordinateur, comme tous les adolescents. Il aime les Minions, et il adore les vacances, surtout partir en famille. C\u2019est sous un soleil radieux que j’ai rencontr\u00e9 la famille Eberwein de Reutlingen dans leur maison de vacances, dans la belle ville de Reifnitz sur le lac W\u00f6rthersee (Carinthie\/Autriche). Julian, sa m\u00e8re et son p\u00e8re, Gina et Walter, et sa s\u0153ur Annabel passent quelques jours en Carinthie et en Italie. \u00ab Des vacances pour l’\u00e2me \u00bb, comme Gina appelle leur s\u00e9jour l\u00e0-bas.<\/p>\n

Julian a pass\u00e9 une grande partie des six premi\u00e8res ann\u00e9es de sa vie \u00e0 l’h\u00f4pital, en raison de vomissements graves et de d\u00e9shydratation, cons\u00e9cutifs \u00e0 une maladie infantile. Gina se souvient qu’ils ont d\u00fb se rendre \u00e0 l’h\u00f4pital de Reutlingen 15 fois au cours de ces ann\u00e9es. Les m\u00e9decins de Julian pensaient qu’il souffrait de diab\u00e8te et la famille a re\u00e7u un moniteur de glyc\u00e9mie. Le soup\u00e7on n’a pas \u00e9t\u00e9 confirm\u00e9, mais les vomissements ont continu\u00e9. Julian a d\u00e9velopp\u00e9 des difficult\u00e9s respiratoires et a re\u00e7u un inhalateur. D\u00e8s l’\u00e2ge de sept ans, les vomissements ont diminu\u00e9, mais ils se sont r\u00e9guli\u00e8rement rendus \u00e0 l’h\u00f4pital universitaire de T\u00fcbingen pour des examens compl\u00e9mentaires. Finalement, on lui a diagnostiqu\u00e9 le syndrome de KBG\u00e9galement connu sous le nom de syndrome d’Hermann Pallister), qui est associ\u00e9 \u00e0 des retards de d\u00e9veloppement et \u00e9ventuellement \u00e0 une augmentation des oublis. Ses parents ne savaient pas que l’\u00e9pilepsie \u00e9tait associ\u00e9e au syndrome et pouvait survenir. La surveillance SPC a eu lieu r\u00e9guli\u00e8rement, mais comme pour de nombreuses familles, le COVID-19 a rendu tr\u00e8s difficile la fr\u00e9quentation de l’h\u00f4pital et le suivi SPC.<\/p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2022\/08\/NightWatch-story_Familie-Eberwein.jpg\u00a0\u00bb title_text=\u00a0\u00bbNightWatch-story_Familie Eberwein\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb width_tablet=\u00a0\u00bb58%\u00a0\u00bb width_phone=\u00a0\u00bb100%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ custom_padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#f7f9fd\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px|20px|0px|20px|false|false\u00a0\u00bb custom_padding_phone=\u00a0\u00bb0px|20px|0px|20px|false|false\u00a0\u00bb global_module=\u00a0\u00bb32199″ saved_tabs=\u00a0\u00bball\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]

Vers la mi-juillet, Julian s’est \u00e9vanoui de mani\u00e8re inattendue pour la premi\u00e8re fois et est tomb\u00e9 en jouant de la guitare. Heureusement, son p\u00e8re \u00e9tait \u00e0 proximit\u00e9 et l’a entendu tomber. Il trouva Julian \u00e9tendu sur le c\u00f4t\u00e9 sur le sol comme s’il dormait. \u00ab Nous avons pens\u00e9 qu’il avait peut-\u00eatre une migraine ou qu’il \u00e9tait simplement fatigu\u00e9. Ma femme souffre assez souvent de migraines et est sensible aux changements de temps, et nous pensions que Julian pourrait l’\u00eatre aussi \u00bb, dit son p\u00e8re. \u00ab Malheureusement, Julian ne se souvenait de rien apr\u00e8s avoir perdu connaissance, pas m\u00eame qu’il \u00e9tait tomb\u00e9 \u00bb, se souvient le p\u00e8re de Julian.<\/p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2022\/08\/NightWatch-story_Familie-Eberwein-2.jpg\u00a0\u00bb title_text=\u00a0\u00bbNightWatch-story_Familie Eberwein-2″ align=\u00a0\u00bbcenter\u00a0\u00bb align_tablet=\u00a0\u00bb\u00a0\u00bb align_phone=\u00a0\u00bbcenter\u00a0\u00bb align_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb91%\u00a0\u00bb width_tablet=\u00a0\u00bb81%\u00a0\u00bb width_phone=\u00a0\u00bb100%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]

Le 19 ao\u00fbt, ils ont d\u00fb emmener Julian \u00e0 l’h\u00f4pital car la nuit pr\u00e9c\u00e9dente, chez ses grands-parents, il s’\u00e9tait soudainement \u00e9vanoui, \u00e9tait tomb\u00e9 au sol et avait \u00e9t\u00e9 pris de convulsions. Ses l\u00e8vres \u00e9taient bleues, ses dents \u00e9taient serr\u00e9es et sa grand-m\u00e8re a paniqu\u00e9 parce qu’elle ne l’entendait pas respirer et pensait qu’il avait aval\u00e9 sa langue. Elle a mis une cuill\u00e8re en bois entre les dents de Julian pour garder sa bouche ouverte et l’a tourn\u00e9 sur le c\u00f4t\u00e9, puis il a repris son souffle.<\/p>\n

\u00c0 l’h\u00f4pital, on a diagnostiqu\u00e9 chez Julian une soi-disant \u00ab\u00a0crise f\u00e9brile\u00a0\u00bb, ce qui confirme simplement qu’une crise s’est produite, caus\u00e9e par un \u00e9v\u00e9nement quelconque, mais pas n\u00e9cessairement une \u00e9pilepsie. Cependant, d’autres examens EEG ont d\u00e9tect\u00e9 des signes d’\u00e9pilepsie. D’autres examens suivront.<\/p>\n

Lorsque Walter et Gina racontent l’histoire, il est \u00e9vident qu’ils \u00e9taient boulevers\u00e9s par les premi\u00e8res crises. \u00ab\u00a0Que dois-je faire s’il a une crise\u00a0? Que dois-je faire si sa langue tombe en arri\u00e8re ? Que faites-vous si vous avez peur qu’il arrive quelque chose \u00e0 votre enfant, si ses voies respiratoires sont bloqu\u00e9es, par exemple ? \u00bb<\/p>\n

Le m\u00e9decin a pu les conseiller. \u00ab Mettez un rembourrage autour de lui pour qu’il ne se blesse pas. Couchez-le dans une position stable sur le c\u00f4t\u00e9 et attendez deux minutes pour voir il se remet tout seul. Sinon, faites-lui une injection du m\u00e9dicament d’urgence (Midazolam) et, dans tous les cas, appelez l’ambulance si la crise dure plus longtemps. \u00bb<\/p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_module=\u00a0\u00bb32200″ saved_tabs=\u00a0\u00bball\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]

Lorsque j’ai demand\u00e9 si l’h\u00f4pital avait recommand\u00e9 \u00e0 la famille de suivre un cours de secourisme ou de demander conseil \u00e0 un centre de consultation, la r\u00e9ponse a \u00e9t\u00e9 \u00ab\u00a0non\u00a0\u00bb. \u00ab Il y a encore beaucoup de travail \u00e0 faire dans les h\u00f4pitaux \u00bb, selon Walter et Gina Eberwein. \u00ab Aucune surveillance ne nous a non plus \u00e9t\u00e9 recommand\u00e9e, mais nous nous sommes soudainement retrouv\u00e9s dans un tout autre monde <\/span>\u00e0 la suite de ces incidents. Plus rien n’\u00e9tait comme avant. Soudain, tout \u00e9tait diff\u00e9rent. Le pire, c’est quand nous avons lu des informations sur la SUDEP sur Internet. Personne n’en avait parl\u00e9 \u00e0 l’h\u00f4pital. De toute \u00e9vidence, cela nous a rendus tr\u00e8s anxieux. \u00bb<\/p>\n

De leur propre initiative, pouss\u00e9s par l’ins\u00e9curit\u00e9 et la peur, ils ont parcouru Internet pour trouver plus d’informations et tous les s\u00e9minaires en ligne auxquels ils pouvaient assister, ou pour trouver des moyens de surveiller leur enfant pendant la nuit. C\u2019est l\u00e0 qu\u2019ils ont d\u00e9couvert NightWatch, un syst\u00e8me de surveillance nocturne, mais ils auraient aussi souhait\u00e9 une surveillance diurne et envisageaient de se procurer un chien d’assistance, ce qui co\u00fbte tr\u00e8s cher.<\/p>\n

\u00ab Nous avons ensuite parl\u00e9 de NightWatch \u00e0 notre p\u00e9diatre, et elle nous soutient dans tout ce qui concerne Julian, ce qui est vraiment g\u00e9nial \u00bb, explique Gina. \u00ab Malheureusement, depuis les incidents, j’ai tendance \u00e0 devenir une maman h\u00e9licopt\u00e8re, ce que je n’\u00e9tais pas du tout. Mes enfants sont tr\u00e8s ind\u00e9pendants et confiants. \u00bb<\/p>\n

Et Julian et Annabel sont aussi des fr\u00e8res et s\u0153urs tr\u00e8s proches : ils partagent la peluche Plume, fournie avec NightWatch. Julian peut l’utiliser quand il va dormir, et Annabel l’a pendant la journ\u00e9e. Plume a \u00e9galement accompagn\u00e9 la famille lors de leur voyage \u00e0 Klagenfurt.<\/p>[\/et_pb_text][et_pb_image src=\u00a0\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2022\/08\/NightWatch-story_Familie-Eberwein-3.jpg\u00a0\u00bb title_text=\u00a0\u00bbNightWatch-story_Familie Eberwein-3″ _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00a0\u00bb4.18.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]

La famille loue NightWatch depuis trois mois maintenant et, heureusement, NightWatch a pu arranger une livraison rapide sur leur lieu de vacances. Gina en \u00e9tait soulag\u00e9e. \u00ab J’ai remarqu\u00e9 que Julian \u00e9tait tr\u00e8s d\u00e9tendu pendant son sommeil la nuit derni\u00e8re. Il a dormi profond\u00e9ment et \u00e0 poings ferm\u00e9s, ce qui est diff\u00e9rent de d’habitude parce qu’il avait un sommeil tr\u00e8s l\u00e9ger et ronflait ces derniers temps. J’aurais \u00e9t\u00e9 heureuse d’\u00e9couter sa respiration r\u00e9guli\u00e8re toute la nuit. \u00bb<\/p>\n

Nous continuons \u00e0 souhaiter le meilleur \u00e0 la famille Eberwein !!!<\/strong><\/p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n\n\n","protected":false},"excerpt":{"rendered":"

Julian a 10 ans. C\u2019est un gar\u00e7on brillant qui aime jouer de la guitare et faire des jeux \u00e0 l\u2019ordinateur, comme tous les adolescents.<\/p>\n","protected":false},"author":3,"featured_media":32178,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[23],"tags":[],"class_list":["post-32248","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nightwatch-stories"],"yoast_head":"\n\u00c9pilepsie soudaine | Une histoire NightWatch<\/title>\n<meta name=\"description\" content=\"Julian a 10 ans. 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