{"id":40190,"date":"2023-06-13T11:50:21","date_gmt":"2023-06-13T09:50:21","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=40190"},"modified":"2023-06-13T11:50:22","modified_gmt":"2023-06-13T09:50:22","slug":"kubik-trpi-kvuli-syndromu-dravetove-tezkymi-zachvaty","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=40190","title":{"rendered":"Kub\u00edk trp\u00ed kv\u016fli syndromu Dravetov\u00e9 t\u011b\u017ek\u00fdmi z\u00e1chvaty"},"content":{"rendered":"\n

Sedmilet\u00fd Jakub z\u00a0Hostivic u Prahy se bohu\u017eel nikdy zcela nevyl\u00e9\u010d\u00ed, trp\u00ed toti\u017e vz\u00e1cn\u00fdm onemocn\u011bn\u00edm \u2013 tzv. syndromem Dravetov\u00e9, kter\u00fd se projevuje t\u011b\u017ek\u00fdmi epileptick\u00fdmi z\u00e1chvaty a zpomaluje ment\u00e1ln\u00ed v\u00fdvoj. S\u00a0nemoc\u00ed bojuje u\u017e od \u0161esti t\u00fddn\u016f sv\u00e9ho \u017eivota. Vzhledem k\u00a0tomu, \u017ee jeho nemoc nereaguje na b\u011b\u017en\u00e9 l\u00e9ky, neda\u0159\u00ed se jeho z\u00e1chvaty dostat \u00fapln\u011b pod kontrolu.<\/strong><\/p>\n\n\n\n

\u201eKuba p\u0159i vir\u00f3z\u00e1ch prod\u011bl\u00e1v\u00e1 z\u00e1chvaty, kter\u00e9 trvaj\u00ed i hodinu. Tento typ z\u00e1chvat\u016f doprov\u00e1z\u00ed velk\u00e9 k\u0159e\u010de a \u0161kub\u00e1n\u00ed, Kub\u00edk p\u0159i nich jde okam\u017eit\u011b do bezv\u011bdom\u00ed a pad\u00e1 na zem. V\u011bt\u0161inou ho mus\u00ed odv\u00e1\u017eet sanitka do nemocnice. Ka\u017ed\u00fd takov\u00fd z\u00e1chvat mu nav\u00edc p\u016fsob\u00ed negativn\u011b na mozek,\u201c<\/em> popisuje jeho maminka Marcela. Spole\u010dn\u011b s\u00a0l\u00e9ka\u0159i se proto u\u017e t\u00e9m\u011b\u0159 osm let sna\u017e\u00ed naj\u00edt spr\u00e1vnou kombinaci l\u00e9k\u016f, kter\u00e1 by Kub\u00edkovi co nejv\u00edce zm\u00edrnila projevy jeho nemoci. \u201eJe to neust\u00e1l\u00e9 zkou\u0161en\u00ed a vym\u011b\u0148ov\u00e1n\u00ed l\u00e9k\u016f. \u201aDraveti\u2018 si bohu\u017eel na spoustu z\u00a0t\u011bchto l\u00e9k\u016f vytvo\u0159\u00ed rezistenci. Od stanoven\u00ed diagn\u00f3zy jsme vyzkou\u0161eli t\u00e9m\u011b\u0159 v\u0161e, co bylo dostupn\u00e9. \u0158ada l\u00e9k\u016f m\u00e1 nav\u00edc ne\u017e\u00e1douc\u00ed \u00fa\u010dinky, tak\u017ee je to skute\u010dn\u011b alchymie,\u201c <\/em>popisuje Marcela.<\/p>\n\n\n\n

\u201eKuba te\u010f bere p\u011bt l\u00e9k\u016f z\u00e1rove\u0148, a kdy\u017e pominu mal\u00e9 z\u00e1chvaty, kter\u00e9 m\u00e1 denn\u011b, po\u010det t\u011bch obrovsk\u00fdch se sice d\u00edky l\u00e9\u010db\u011b sn\u00ed\u017eil, ale st\u00e1le jsou velk\u00e9 a \u010dasto ho ohro\u017euj\u00ed na \u017eivot\u011b. Ka\u017ed\u00fd v\u011bt\u0161\u00ed z\u00e1chvat vrac\u00ed Kub\u00edka v\u00fdvojov\u011b a\u017e o p\u016fl roku zp\u00e1tky,\u201c<\/em> vysv\u011btluje Marcela. Sedmilet\u00fd Kuba je v\u00a0sou\u010dasn\u00e9 dob\u011b na \u00farovni 2\u20133let\u00e9ho d\u00edt\u011bte, co se t\u00fdk\u00e1 mluven\u00ed a ch\u016fze. Trp\u00ed tak\u00e9 st\u0159edn\u011b t\u011b\u017ekou ment\u00e1ln\u00ed retardac\u00ed a atypick\u00fdm autismem. <\/p>\n\n\n\n

\u201eProjevuje se to u n\u011bj bohu\u017eel poruchami chov\u00e1n\u00ed, sv\u016fj nesouhlas n\u011bkdy vyjad\u0159uje t\u00edm, \u017ee rozb\u00edj\u00ed v\u011bci, a doch\u00e1z\u00ed u n\u011bj i k\u00a0sebepo\u0161kozov\u00e1n\u00ed. Nav\u00edc je hyperaktivn\u00ed, co\u017e je \u0161patn\u00e9, proto\u017ee kv\u016fli nemoci mu nem\u016f\u017eeme dovolit, aby se po\u0159\u00e1dn\u011b vy\u0159\u00e1dil,\u201c<\/em> dod\u00e1v\u00e1 jeho maminka. Pr\u00e1v\u011b emoce jsou toti\u017e jedn\u00edm ze spou\u0161t\u011b\u010d\u016f Kub\u00edkov\u00fdch z\u00e1chvat\u016f, tak\u017ee ho mus\u00ed rodina neust\u00e1le hl\u00eddat a krotit v\u00a0chov\u00e1n\u00ed. <\/p>\n\n\n\n

\u201eKuba nesm\u00ed m\u00edt vztek ani radost. Nem\u016f\u017ee proto nap\u0159\u00edklad chodit na h\u0159i\u0161t\u011b. Ned\u00e1vno jsem mu povolila dvakr\u00e1t prob\u011bhnout kalu\u017e\u00ed a dostal velk\u00fd z\u00e1chvat. Jednou mu chcete dop\u0159\u00e1t opravdovou radost a je z\u00a0toho obrovsk\u00fd pr\u016f\u0161vih,\u201c <\/em>popisuje Marcela. <\/p>\n\n\n\n

Dal\u0161\u00edm v\u00fdrazn\u00fdm spou\u0161t\u011b\u010dem Kub\u00edkov\u00fdch z\u00e1chvat\u016f je jak\u00e9koli p\u0159eh\u0159\u00e1t\u00ed. \u201eSta\u010d\u00ed, kdy\u017e je venku horko nebo m\u00e1 syn lehce zv\u00fd\u0161enou teplotu, a je zle,\u201c <\/em>potvrzuje Marcela. O to v\u011bt\u0161\u00ed radost j\u00ed d\u011blaj\u00ed jak\u00e9koli mal\u00e9 pokroky, kter\u00fdch Kuba dosahuje. \u201eKub\u00edk u\u017e um\u00ed poznat barvy, znaky a n\u011bkter\u00e1 p\u00edsmenka. A za\u010d\u00edn\u00e1 m\u00edt z\u00e1jem o kn\u00ed\u017eky, d\u0159\u00edve s\u00a0nimi jen h\u00e1zel a te\u010f si je kone\u010dn\u011b prohl\u00ed\u017e\u00ed, i kdy\u017e obsahu st\u00e1le nerozum\u00ed,\u201c <\/em>popisuje Marcela. <\/p>\n\n\n\n

Nav\u0161t\u011bvovat nav\u00edc za\u010dal prvn\u00ed t\u0159\u00eddu speci\u00e1ln\u00ed \u0161koly, kam ale m\u016f\u017ee doch\u00e1zet maxim\u00e1ln\u011b t\u0159ikr\u00e1t t\u00fddn\u011b na hodinu a p\u016fl. \u201eKuba del\u0161\u00ed dobu neudr\u017e\u00ed pozornost a velmi rychle a snadno se unav\u00ed, co\u017e mu m\u016f\u017ee vyvolat z\u00e1chvat. \u0160kola, do kter\u00e9 chod\u00ed, samoz\u0159ejm\u011b neodpov\u00edd\u00e1 b\u011b\u017en\u00e9mu typu studia, pro n\u00e1s je ale d\u016fle\u017eit\u00e9, \u017ee tam chod\u00ed r\u00e1d, proto\u017ee miluje d\u011bti. V\u0161e prob\u00edh\u00e1 formou hry a podob\u00e1 se to sp\u00ed\u0161 v\u00fduce ve \u0161kolce. Jsem moc r\u00e1da, \u017ee Kub\u00edk \u00fapln\u011b nestagnuje ve v\u00fdvoji. To je pro n\u00e1s v\u0161echny ta nejlep\u0161\u00ed motivace do dal\u0161\u00edho \u017eivota,\u201c <\/em>dod\u00e1v\u00e1 Marcela. <\/p>\n\n\n\n

Nemoc jej\u00edho syna ji p\u0159ivedla k\u00a0pr\u00e1ci dobrovolnice v neziskov\u00e9 organizaci Epicana, kter\u00e1 pom\u00e1h\u00e1 lidem s epilepsi\u00ed, obzvl\u00e1\u0161t\u011b se syndromem Dravetov\u00e9, a organizuje kulturn\u00ed a vzd\u011bl\u00e1vac\u00ed akce na jejich podporu. Jednou z\u00a0nich bude i charitativn\u00ed akce s\u00a0n\u00e1zvem EpicanaFest<\/a>, kter\u00e1 se uskute\u010dn\u00ed 24. \u010dervna v\u00a0Praze 10 na Gutovce u p\u0159\u00edle\u017eitosti Mezin\u00e1rodn\u00edho dne pov\u011bdom\u00ed o syndromu Dravetov\u00e9.<\/p>\n","protected":false},"excerpt":{"rendered":"

Sedmilet\u00fd Jakub z\u00a0Hostivic u Prahy se bohu\u017eel nikdy zcela nevyl\u00e9\u010d\u00ed, trp\u00ed toti\u017e vz\u00e1cn\u00fdm onemocn\u011bn\u00edm \u2013 tzv. syndromem Dravetov\u00e9, kter\u00fd se projevuje t\u011b\u017ek\u00fdmi epileptick\u00fdmi z\u00e1chvaty a […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":40191,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-40190","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40190","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=40190"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40190\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/40191"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40190"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40190"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40190"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}