{"id":34871,"date":"2023-02-21T09:35:57","date_gmt":"2023-02-21T08:35:57","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/?p=34871"},"modified":"2023-02-21T09:41:13","modified_gmt":"2023-02-21T08:41:13","slug":"maman-apaise-moi-aide","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/fr\/maman-apaise-moi-aide\/","title":{"rendered":"\u00ab\u00a0Maman, aide-moi, le tremblement revient\u00a0\u00bb"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb saved_tabs=\u00a0\u00bball\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.19.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.19.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.20.0″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]Une m\u00e8re gagne devant le tribunal social la prise en charge des frais de surveillance nocturne.<\/strong>
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Connaissez-vous la tanzcompany DIN A 13 ? \u00ab\u00a0La tanzcompany DIN A 13 est au niveau international l’un des rares ensembles de danse dont les membres sont compos\u00e9s de danseurs avec ou sans handicap physique\u00a0\u00bb (www.din-a13.de<\/a>). Il ne s’agit pas d’inclusion, mais d’art et d’expression d’une vie aux multiples facettes dans des formes de mouvement et de jeu.<\/p>\n

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Programme d’\u00e9ducation de la DIN A 13 tanzcompany M.A.D.E. : Soir\u00e9e d’\u00e9ducation \u00e0 la danse mixte avec Anastasia Olfert (en chemisier bleu), Photo : priv\u00e9e<\/span><\/em><\/p>\n

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Anastasia Olfert est productrice cr\u00e9ative chez DIN A13 tanzcompany. Elle s’occupe de tout ce qui concerne la gestion des productions de danse.<\/span><\/p>\n

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Sa fille, Aurora Jose, 5 ans et demi, apprend la danse et le mouvement au sein de la tanzcompany, dans une atmosph\u00e8re d\u00e9tendue et relaxante. On lui enseigne que son corps lui envoie les bons signaux et elle apprend \u00e0 \u00e9couter ces signaux.<\/span><\/p>\n

\u00ab\u00a0Maman, aide-moi s’il te pla\u00eet, le tremblement revient\u00a0\u00bb est une phrase qu’Anastasia entend de la bouche de sa fille lorsque celle-ci remarque au cours de la journ\u00e9e qu’une crise pourrait survenir ou que quelque chose change dans son corps ou sa perception. Au-del\u00e0 des limites du physique, la m\u00e8re et la fille essaient de trouver des alternatives en plus des traitements m\u00e9dicamenteux classiques n\u00e9cessaires et \u00e0 la surveillance des crises avec NightWatch, qui augmente la qualit\u00e9 de vie et apporte \u00e9galement joie et motivation. <\/span><\/p>\n

\u00ab\u00a0Il est important que les enfants connaissent leurs ressources, comme la force et la r\u00e9silience, et qu’ils puissent les utiliser dans les moments n\u00e9cessaires\u00a0\u00bb, explique Anastasia Olfert. \u00ab\u00a0Nous apprenons cela par des exercices de respiration, la danse, le mouvement, l’acc\u00e8s \u00e0 la physicalit\u00e9, et nous avons aussi des tonis avec des moments de relaxation et nous faisons du bien-\u00eatre de temps en temps.\u00a0\u00bb Les m\u00e9dicaments rendent souvent sa fille fatigu\u00e9e et \u00e9tourdie, et \u00e0 travers la joie du mouvement et le rythme de la danse, sa fille est capable de secouer cette somnolence.<\/span><\/p>\n

Sa brillante fille Aurora a invent\u00e9 le mot \u00ab\u00a0wiggle\u00a0\u00bb pour ses crises d’\u00e9pilepsie, qui se produisent principalement pendant le sommeil, et annonce \u00e0 sa m\u00e8re les crises possibles en disant : \u00ab\u00a0Maman, le wiggle revient\u00a0\u00bb. Gr\u00e2ce \u00e0 ce mot, l’enfant est capable de bien accepter la maladie et les sympt\u00f4mes.<\/span><\/p>\n

Aurora a \u00e9t\u00e9 diagnostiqu\u00e9e avec le syndrome de West \/ \u00e9pilepsie BNS \u00e0 l’\u00e2ge de 7 mois.<\/span><\/p>\n

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Around 50-70% of the children eventually grow out of their seizures. This is most likely to happen in children who respond well to medication, have relatively few seizures or when there is no evidence of an underlying neurological problem.<\/span><\/p>\n

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Note de l’auteur : selon l’ILAE, le syndrome de West est reconnu comme un syndrome \u00e9pileptique infantile depuis sa premi\u00e8re apparition (1841) (classification ICD-10 : G40. 4, autres \u00e9pilepsies et syndromes \u00e9pileptiques g\u00e9n\u00e9ralis\u00e9s) et est consid\u00e9r\u00e9 comme un paradigme d’un syndrome \u00e9pileptique conduisant \u00e0 une d\u00e9t\u00e9rioration neurologique (enc\u00e9phalopathie \u00e9pileptique) et a fait l’objet de nombreuses \u00e9tudes visant \u00e0 comprendre les relations complexes entre un trouble \u00e9pileptique et le neurod\u00e9veloppement. Le SNB d\u00e9signe les \u00ab\u00a0crises de flash, les crises de hochement de t\u00eate et les convulsions de salaam\u00a0\u00bb.<\/em><\/p>\n

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Le syndrome de West est consid\u00e9r\u00e9 comme difficile ou r\u00e9sistant \u00e0 la th\u00e9rapie, ce qui signifie que les crises surviennent malgr\u00e9 les m\u00e9dicaments. Heureusement, Aurora n’a pas eu de crise pendant un an et demi d\u00e8s la prise du premier m\u00e9dicament. \u00c0 deux ans et demi, les crises sont revenues, et toutes les crises provenaient du sommeil. Aurora dort sur le ventre et fait des crises dans son oreiller. Le pronostic du syndrome de West est associ\u00e9 \u00e0 une esp\u00e9rance de vie r\u00e9duite et, par cons\u00e9quent, il s’accompagne d’une charge psychologique et d’un stress accru pour les soignants. La m\u00e8re a un emploi et la fille dort dans sa propre chambre. En raison de l’\u00e9tat de l’enfant et du type de crises d’\u00e9pilepsie, la m\u00e8re a peur qu\u2019un incident se produise pendant son sommeil. L\u2019emploi de la m\u00e8re avec un enfant handicap\u00e9 est possible car Anastasia Olfert dispose d’un r\u00e9seau de soutien familial. Ses parents l’aident \u00e0 s’occuper d’Aurora ou l’accompagnent \u00e0 l’h\u00f4pital, entre autres. \u00ab\u00a0Tous les parents n’ont pas les ressources n\u00e9cessaires pour \u00eatre employ\u00e9s comme je le suis, et j’en suis tr\u00e8s reconnaissante.\u00a0\u00bb<\/span><\/p>\n

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Pendant les r\u00e9p\u00e9titions avec la tanzcompany DIN A 13, Aurora est au milieu. Photo : priv\u00e9e<\/em><\/p>\n

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En juin 2021, le m\u00e9decin traitant du SPZ de Cologne a prescrit NightWatch. Mme Olfert avait d\u00e9j\u00e0 essay\u00e9 NightWatch auparavant (position de portage sur le bras puis sur la jambe en raison d’une \u00e9pilepsie BNS) et en \u00e9tait tr\u00e8s satisfaite. La m\u00e8re et l’enfant dormaient plus sereinement parce qu’ils pouvaient compter sur une aide d’une grande sensibilit\u00e9. Le m\u00e9decin a recommand\u00e9 NightWatch en raison de sa multimodalit\u00e9 et de sa mobilit\u00e9. La mesure du rythme cardiaque, des mouvements et de la position du corps est plus appropri\u00e9e aux types de crises de l’enfant. Le m\u00e9decin l’a justifi\u00e9 dans sa lettre favorable \u00e0 la caisse d’assurance maladie.<\/span><\/p>\n

La HEK a rejet\u00e9 la demande de NightWatch et a recommand\u00e9 Epicare. L’objection de la m\u00e8re, accompagn\u00e9e d’une nouvelle justification du m\u00e9decin, a \u00e9t\u00e9 rejet\u00e9e \u00e0 plusieurs reprises par la caisse d’assurance maladie. Il n’y a pas eu d’appel de la caisse maladie ou de contact personnel, les demandes ont \u00e9t\u00e9 formellement rejet\u00e9es sans autre justification. \u00ab\u00a0Les parents doivent se justifier tout le temps quand ils ont un besoin pour leur enfant malade et un besoin de soutien, alors que nous avons d\u00e9j\u00e0 beaucoup \u00e0 faire avec les soins, le soutien et la gestion de l\u2019enfant au quotidien. Personne ne m’a jamais parl\u00e9, il n’y a pas eu de conversation en t\u00eate-\u00e0-t\u00eate et aucune place n’a \u00e9t\u00e9 laiss\u00e9e \u00e0 l’individualit\u00e9. Cela fait beaucoup de mal \u00e0 l’esprit\u00a0\u00bb, dit Anastasia Olfert, en repensant au processus de candidature.<\/span><\/p>\n

Mme Olfert est alors devenue membre de l’association sociale VdK Allemagne, un avocat lui a \u00e9t\u00e9 attribu\u00e9 et le VdK a pris en charge la proc\u00e9dure devant le tribunal social de Cologne. La pr\u00e9paration de la proc\u00e9dure a demand\u00e9 beaucoup de travail, toutes les hospitalisations, les visites chez le m\u00e9decin, les constatations, les prescriptions, etc. ont d\u00fb \u00eatre prouv\u00e9es depuis la naissance. Une expertise a \u00e9t\u00e9 demand\u00e9e \u00e0 un \u00e9pileptologue renomm\u00e9 et soumise au tribunal.<\/span><\/p>\n

Le tribunal social a accept\u00e9 la demande de la m\u00e8re en janvier 2023 et la HEK a maintenant approuv\u00e9 la demande de remboursement de NightWatch. Du c\u00f4t\u00e9 de la HEK est arriv\u00e9e une lettre dans laquelle \u00a0\u00bb la prise en charge des frais apr\u00e8s un nouvel examen \u00a0\u00bb a \u00e9t\u00e9 confirm\u00e9e.<\/span><\/p>\n

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Quand Anastasia dort chez ses grands-parents ou, comme r\u00e9cemment, chez un ami, NightWatch l’accompagne, bien s\u00fbr. Mais ce qui est encore plus important pour Aurora, c’est que Yoyo, la peluche de NightWatch, l’accompagne. \u00ab\u00a0Si Yoyo est avec moi, maman, alors je ne suis pas seule et nous pouvons tous les deux aller au lit. Nous ne ratons pas le tremblement\u00a0\u00bb, a d\u00e9clar\u00e9 Aurora.<\/span><\/p>\n

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Aurora endormie <\/em>\ud83d\ude0a. Photo : priv\u00e9e<\/em><\/p>\n

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Dans un avenir proche, Mme Olfert aimerait faire une cure m\u00e8re-enfant avec sa fille et refaire un stage de perfectionnement FAMOSES. Elle aime le contact et l’\u00e9change entre personnes partageant les m\u00eames id\u00e9es. A partir d’ao\u00fbt 2023, Aurora ira \u00e0 l’\u00e9cole (1\u00e8re ann\u00e9e). Ils ont trouv\u00e9 l'\u00a0\u00bbActive School\u00a0\u00bb, une \u00e9cole de soutien et d’int\u00e9gration, o\u00f9 plusieurs enfants \u00e9pileptiques sont inscrits et que tous deux attendent d\u00e9j\u00e0 avec impatience.<\/span><\/p>\n

Lorsqu’on lui demande o\u00f9 elle trouve son \u00e9nergie, Anastasia Olfert r\u00e9pond : \u00ab\u00a0Je puise mon \u00e9nergie dans la maison de mes parents et dans mon travail avec des personnes qui sentent qu’elles ont des besoins diff\u00e9rents et qu’il est naturel d’avoir des besoins diff\u00e9rents. Je prends soin de moi, j’ai \u00e9galement eu une bonne assistante sociale et je b\u00e9n\u00e9ficie du soutien des services de r\u00e9pit familial, qui savent aussi d\u00e9j\u00e0 bien comment g\u00e9rer NightWatch.\u00a0\u00bb<\/span><\/p>\n

Et lorsqu’on lui demande comment elle vit le \u00ab\u00a0tremblement\u00a0\u00bb de sa fille en tant que m\u00e8re, elle r\u00e9pond : \u00ab\u00a0Quand un corps s’arr\u00eate, l’autre (l’observateur, l’aidant) s’arr\u00eate aussi. Il faut que les parents aillent bien pour que les enfants aillent bien. Il y a un an, j’ai eu un prolapsus, et c’est l\u00e0 que j’ai r\u00e9alis\u00e9 que je ne pouvais pas aller plus loin, je n’avais plus de force. Avec l’aide de la physioth\u00e9rapie et de l’ost\u00e9opathie, j’ai surmont\u00e9 la douleur sans avoir recours \u00e0 la chirurgie. Pour beaucoup de choses, il faut souvent du temps et de la patience. Bien s\u00fbr, il faut faire quelque chose pour que les choses s’arrangent, et pour cela, il est important de conna\u00eetre ses ressources et de pouvoir s’y appuyer.\u00a0\u00bb<\/span><\/p>\n

Merci beaucoup pour cette interview int\u00e9ressante !<\/span><\/p>\n

<\/span><\/p>\n

Tous mes v\u0153ux, Birgit E. Langen<\/span><\/p>\n

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