{"id":528,"date":"2017-06-04T15:22:54","date_gmt":"2017-06-04T13:22:54","guid":{"rendered":"http:\/\/www.ag1-23soleil.fr\/wp\/?page_id=528"},"modified":"2020-12-14T23:21:10","modified_gmt":"2020-12-14T22:21:10","slug":"lou","status":"publish","type":"page","link":"http:\/\/www.ag1-23soleil.fr\/wp\/temoignages\/lou\/","title":{"rendered":"Lou"},"content":{"rendered":"\t\t
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Lou<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Texte de Lou :
Bonjour, c’est Lou ! J’ai 11 ans et \u00e7a fait un peu plus d’un an que je sais que j’ai cette maladie.
Je prends des m\u00e9dicaments tous les matins et soirs, mais je n’ai pas de r\u00e9gime alimentaire (sauf si je suis malade ou que j’ai de la fi\u00e8vre). Je rentre en 6\u00e8me \u00e0 la rentr\u00e9e prochaine. Je fais de la danse et aussi du badminton lors des activit\u00e9s extra-scolaires. Et je chante dans une chorale. J’ai quelques difficult\u00e9s quand je dois courir et aussi pour \u00e9crire longtemps.
Sinon je suis en pleine forme et heureuse de vivre. LOU<\/p>

Texte de Karine, sa maman :
Comme l’a dit Lou, elle est en pleine forme et c’est une enfant tr\u00e8s joyeuse au quotidien.
Le diagnostic d’AG1 est arriv\u00e9 tr\u00e8s tardivement, Lou avait d\u00e9j\u00e0 10 ans car elle n’a jamais d\u00e9compens\u00e9 de fa\u00e7on massive et \u00e0 part quelques lenteurs dans les apprentissages, elle n’a jamais \u00e9t\u00e9 une enfant fragile au niveau de sa sant\u00e9. Cependant, d\u00e8s le 8\u00e8me mois de ma grossesse, certaines anomalies pourtant typiques des AG1 \u00e9taient d\u00e9j\u00e0 visibles (IRM f\u0153tale). Mais aucunes recherches n’ont \u00e9t\u00e9 entreprises. Lou est n\u00e9e \u00e0 terme sans aucun souci, malgr\u00e9 un p\u00e9rim\u00e8tre cr\u00e2nien sup\u00e9rieur \u00e0 la moyenne et durant les 8 premiers mois de sa vie, Lou \u00e9tait m\u00eame en avance.
Puis 3 crises ressemblant \u00e0 de l’\u00e9pilepsie ont ralentie la progression des acquisitions et m\u00eame la r\u00e9cup\u00e9ration des acquis a \u00e9t\u00e9 tr\u00e8s lente. Mais toujours pas de diagnostic d’AG1. Durant sa scolarit\u00e9 en maternelle, Lou a b\u00e9n\u00e9fici\u00e9 de s\u00e9ances d’orthophonie et de psychomotricit\u00e9 dans un CMPP, car des retards de langage et de motricit\u00e9 ont \u00e9t\u00e9 d\u00e9tect\u00e9s. C’est \u00e0 son entr\u00e9e au CP que les difficult\u00e9s ont \u00e9t\u00e9 flagrantes : lecture tr\u00e8s compliqu\u00e9e \u00e0 maitriser et en CM1, l’\u00e9criture laissait aussi \u00e0 d\u00e9sirer.<\/p>

Les devoirs \u00e0 la maison (1H15 au lieu de 20 min…) \u00e9taient tr\u00e8s laborieux , malgr\u00e9 le fait qu’il n’y ait aucun d\u00e9ficit intellectuel ! Tout cela m’a d\u00e9cider \u00e0 consulter un neuro-p\u00e9diatre \u00e0 Rennes et c’est gr\u00e2ce \u00e0 une simple analyse d’urine (!!), que l’AG1 a \u00e9t\u00e9 enfin diagnostiqu\u00e9e. L’organisme de Lou semble assez bien se \u00ab\u00a0d\u00e9brouiller\u00a0\u00bb avec les prot\u00e9ines, c’est pour cette raison qu’elle n’a pas \u00e9t\u00e9 mise sous r\u00e9gime au quotidien. Malgr\u00e9 quelques bizarreries et un peu d’immaturit\u00e9 chez Lou, elle est autonome : s’habille seule (tant pis pour les \u00ab \u00e0 l’endroits-\u00e0 l’envers \u00bb), fait sa toilette toute seule et se rend m\u00eame \u00e0 l’\u00e9cole \u00e0 pied sans \u00eatre accompagn\u00e9e. Et d\u00e8s Septembre, elle prendra le bus scolaire pour se rendre au coll\u00e8ge!!! Croisons les doigts…<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

Lou Texte de Lou :Bonjour, c’est Lou ! J’ai 11 ans et \u00e7a fait un peu plus d’un an que je sais que j’ai cette maladie.Je prends des m\u00e9dicaments tous les matins et soirs, mais je n’ai pas de r\u00e9gime alimentaire (sauf si je suis malade ou que j’ai de la fi\u00e8vre). Je rentre en… Lire la suite »Lou<\/span><\/a><\/p>\n","protected":false},"author":3,"featured_media":529,"parent":58,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"page-templates\/template-pagebuilder-full-width.php","meta":{"neve_meta_sidebar":"","neve_meta_container":"","neve_meta_enable_content_width":"off","neve_meta_content_width":0,"neve_meta_title_alignment":"","neve_meta_author_avatar":"","neve_post_elements_order":"","neve_meta_disable_header":"","neve_meta_disable_footer":"","neve_meta_disable_title":"on","footnotes":""},"class_list":["post-528","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nLou - Association AG1-23 SOLEIL<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.ag1-23soleil.fr\/wp\/temoignages\/lou\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lou - Association AG1-23 SOLEIL\" \/>\n<meta property=\"og:description\" content=\"Lou Texte de Lou :Bonjour, c’est Lou ! J’ai 11 ans et \u00e7a fait un peu plus d’un an que je sais que j’ai cette maladie.Je prends des m\u00e9dicaments tous les matins et soirs, mais je n’ai pas de r\u00e9gime alimentaire (sauf si je suis malade ou que j’ai de la fi\u00e8vre). 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