{"id":38604,"date":"2023-02-24T13:47:58","date_gmt":"2023-02-24T12:47:58","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=38604"},"modified":"2023-02-24T13:47:59","modified_gmt":"2023-02-24T12:47:59","slug":"desitky-deti-ziji-s-nemoci-u-niz-radost-muze-zpusobit-zachvat","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=38604","title":{"rendered":"Des\u00edtky d\u011bt\u00ed \u017eij\u00ed s nemoc\u00ed, u n\u00ed\u017e radost m\u016f\u017ee zp\u016fsobit z\u00e1chvat"},"content":{"rendered":"\n<p><strong>Narod\u00ed se jako zdrav\u00e1 miminka. V prvn\u00edm roce v\u0161ak dostanou sv\u016fj prvn\u00ed z\u00e1chvat, kter\u00fdch pak pro\u017eij\u00ed za \u017eivot stovky. Na vin\u011b je tzv. syndrom Dravetov\u00e9, neurologick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 krom\u011b z\u00e1chvat\u016f tak\u00e9 zna\u010dn\u011b zpomaluje ment\u00e1ln\u00ed v\u00fdvoj d\u011bt\u00ed s\u00a0touto nemoc\u00ed. S\u00a0pomoc\u00ed rodi\u010d\u016f a terapeut\u016f se tyto d\u011bti sice zvl\u00e1dnou nau\u010dit chodit a mluvit, ale je nutn\u00e9 o n\u011b celo\u017eivotn\u011b nep\u0159etr\u017eit\u011b pe\u010dovat. Touto nemoc\u00ed v\u00a0\u010cesku trp\u00ed p\u0159ibli\u017en\u011b 100 d\u011bt\u00ed, podle l\u00e9ka\u0159\u016f jim v\u00a0sou\u010dasn\u00e9 dob\u011b sch\u00e1z\u00ed p\u0159edev\u0161\u00edm dopl\u0148kov\u00e1 terapie jako logopedie nebo ergoterapie, je\u017e by byla hrazena zdravotn\u00edmi poji\u0161\u0165ovnami. <\/strong><\/p>\n\n\n\n<p>D\u011bti se syndromem Dravetov\u00e9 se prvn\u00edch n\u011bkolik m\u011bs\u00edc\u016f \u017eivota rozv\u00edj\u00ed jako zdrav\u00e1 miminka. <em>\u201eV\u011bt\u0161inou mezi \u010dtvrt\u00fdm a sedm\u00fdm m\u011bs\u00edcem pak dostanou prvn\u00ed epileptick\u00fd z\u00e1chvat, kter\u00fd spou\u0161t\u00ed zv\u00fd\u0161en\u00e1 teplota. Podob\u00e1 se tzv. febriln\u00edm k\u0159e\u010d\u00edm, kter\u00e9 postihuj\u00ed asi 5 % zdrav\u00fdch miminek. Bohu\u017eel v&nbsp;p\u0159\u00edpad\u011b syndromu Dravetov\u00e9 se z\u00e1chvaty n\u00e1sledn\u011b opakuj\u00ed pom\u011brn\u011b \u010dasto, b\u00fdvaj\u00ed del\u0161\u00ed a asymetrick\u00e9, tedy k\u0159e\u010de postihuj\u00ed v\u00edce jednu stranu t\u011bla,\u201c <\/em>\u0159\u00edk\u00e1 MUDr.&nbsp;Katalin \u0160t\u011brbov\u00e1 z Kliniky d\u011btsk\u00e9 neurologie 2. l\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy a&nbsp;Fakultn\u00ed nemocnice Motol. <em>\u201eBohu\u017eel b\u011bhem druh\u00e9ho roku d\u00edt\u011bte se za\u010dne projevovat druh\u00e9 specifikum onemocn\u011bn\u00ed v podob\u011b zpomalen\u00e9ho ment\u00e1ln\u00edho rozvoje. \u00darove\u0148 retardace je individu\u00e1ln\u00ed, ale kv\u016fli opo\u017ed\u011bn\u00e9mu rozvoji ment\u00e1ln\u00edch schopnost\u00ed tyto d\u011bti v\u017edy pot\u0159ebuj\u00ed speci\u00e1ln\u00ed vzd\u011bl\u00e1v\u00e1n\u00ed,\u201c<\/em> popisuje MUDr. \u0160t\u011brbov\u00e1. Onemocn\u011bn\u00ed podle n\u00ed zp\u016fsobuje vz\u00e1cn\u00e1 genetick\u00e1 mutace, kter\u00e1 krom\u011b z\u00e1chvat\u016f znemo\u017e\u0148uje i rozvoj mozku pacient\u016f. Pokud d\u00edt\u011b \u010dasto trp\u00ed t\u011b\u017ek\u00fdmi a dlouh\u00fdmi z\u00e1chvaty, jeho ment\u00e1ln\u00ed v\u00fdvoj se m\u016f\u017ee zpomalit je\u0161t\u011b v\u00edce. D\u011bti se syndromem Dravetov\u00e9 tak od \u00fatl\u00e9ho v\u011bku pot\u0159ebuj\u00ed protiz\u00e1chvatov\u00e9 l\u00e9ky a zvl\u00e1\u0161tn\u00ed p\u00e9\u010di. <em>\u201eVelmi d\u016fle\u017eit\u00e1 je pro d\u011bti od mali\u010dka rehabilitace, logopedie nebo ergoterapie. D\u00edky t\u00e9to p\u00e9\u010di se n\u00e1m da\u0159\u00ed nemocn\u00e9 d\u011bti rozv\u00edjet, a m\u00edrnit tak dopady nemoci. Po\u0159\u00e1d ale vy\u017eaduj\u00ed nep\u0159etr\u017eitou p\u00e9\u010di, a stejn\u00e9 to m\u016f\u017ee z\u016fstat i v dosp\u011blosti,\u201c <\/em>\u0159\u00edk\u00e1 pan\u00ed Lucie, matka \u010dty\u0159let\u00e9 Elenky, kter\u00e1 syndromem Dravetov\u00e9 trp\u00ed. Nemoc se u n\u00ed p\u0159ihl\u00e1sila 45 minut dlouh\u00fdm z\u00e1chvatem, kdy\u017e bylo dce\u0159i 5&nbsp;m\u011bs\u00edc\u016f. V&nbsp;sou\u010dasn\u00e9 dob\u011b je podle l\u00e9ka\u0159\u016f nejv\u011bt\u0161\u00edm probl\u00e9mem nedostatek rehabilita\u010dn\u00edch za\u0159\u00edzen\u00ed. <em>\u201eMimo velk\u00e1 m\u011bsta jsou mo\u017enosti mnohdy velmi omezen\u00e9, co\u017e samoz\u0159ejm\u011b rozvoji d\u011bt\u00ed v\u016fbec nepom\u00e1h\u00e1. Rodi\u010de tak\u00e9 \u010dasto nar\u00e1\u017e\u00ed na nedostate\u010dnou soci\u00e1ln\u00ed podporu \u2013 tu jim \u00fa\u0159ady nep\u0159izn\u00e1vaj\u00ed v&nbsp;adekv\u00e1tn\u00ed v\u00fd\u0161i. P\u0159itom p\u00e9\u010de o&nbsp;d\u00edt\u011b se syndromem Dravetov\u00e9 znemo\u017e\u0148uje pr\u00e1ci t\u0159eba jen na \u010d\u00e1ste\u010dn\u00fd \u00favazek,\u201c<\/em> vysv\u011btluje MUDr. \u0160t\u011brbov\u00e1. Nemoc se nav\u00edc podle l\u00e9ka\u0159ky projevuje velmi intenzivn\u011b hned od za\u010d\u00e1tku. <em>\u201eKdy\u017e byla Elenka \u00fapln\u011b mal\u00e1, m\u011bla z\u00e1chvat\u016f relativn\u011b m\u00e1lo, ale byly dlouh\u00e9. Ve druh\u00e9m roce byla frekvence z\u00e1chvat\u016f nejvy\u0161\u0161\u00ed, m\u011bla jich i n\u011bkolik do t\u00fddne, ale zkr\u00e1tily se. Postupn\u011b jejich po\u010dty p\u0159irozen\u011b klesaj\u00ed, pom\u00e1haj\u00ed protiz\u00e1chvatov\u00e9 l\u00e9ky a rodi\u010de se tak\u00e9 nau\u010d\u00ed z\u00e1chvat\u016fm \u00fa\u010dinn\u011bji p\u0159edch\u00e1zet,\u201c <\/em>\u0159\u00edk\u00e1 pan\u00ed Lucie. Sou\u010dasn\u00e1 modern\u00ed l\u00e9\u010dba umo\u017e\u0148uje po\u010det z\u00e1chvat\u016f v\u00fdrazn\u011b omezit. V budoucnu by mohla b\u00fdt pro nemocn\u00e9 k&nbsp;dispozici tzv. genov\u00e1 terapie, ta je v\u0161ak podle expert\u016f zat\u00edm st\u00e1le pouze ve&nbsp;f\u00e1zi v\u00fdvoje. Jedn\u00edm z&nbsp;nejsiln\u011bj\u0161\u00edch spou\u0161t\u011b\u010d\u016f z\u00e1chvat\u016f je podle l\u00e9ka\u0159\u016f zejm\u00e9na vy\u0161\u0161\u00ed teplota, a\u0165 u\u017e okol\u00ed, nebo v&nbsp;samotn\u00e9m t\u011ble d\u00edt\u011bte. I proto rodi\u010de s&nbsp;nemocn\u00fdmi d\u011btmi v&nbsp;l\u00e9t\u011b mnohdy prakticky nevych\u00e1z\u00ed ven. <em>\u201eDal\u0161\u00edm pro syndrom Dravetov\u00e9 pom\u011brn\u011b specifick\u00fdm spou\u0161t\u011b\u010dem jsou emoce, zejm\u00e9na ty pozitivn\u00ed. Jakmile m\u00e1 tedy d\u00edt\u011b radost, je rozru\u0161en\u00e9 a opravdu siln\u011b n\u011bco pro\u017e\u00edv\u00e1, m\u016f\u017ee to vyvolat z\u00e1chvat,\u201c<\/em> p\u0159ibli\u017euje MUDr.&nbsp;\u0160t\u011brbov\u00e1. Podle n\u00ed v\u0161ak v&nbsp;tomto ohledu d\u011bti nelze p\u0159\u00edli\u0161 omezovat. <em>\u201eJsou to v&nbsp;prvn\u00ed \u0159ad\u011b mal\u00ed lid\u00e9 a n\u011bco takov\u00e9ho jim nem\u016f\u017eeme vz\u00edt,\u201c <\/em>vysv\u011btluje. P\u0159esto\u017ee je syndrom Dravetov\u00e9 vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, dostupnost l\u00e9\u010dby je pro pacienty kl\u00ed\u010dov\u00e1. \u201e<em>Za posledn\u00edch p\u011bt let se n\u00e1m poda\u0159il v\u00fdznamn\u00fd posun v&nbsp;organizaci l\u00e9\u010dby vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a jej\u00edm zakotven\u00ed v&nbsp;\u010desk\u00e9 legislativ\u011b. D\u00edky t\u011bmto nov\u00fdm \u00faprav\u00e1m by se pacienti se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi m\u011bli dostat sn\u00e1z k&nbsp;l\u00e9\u010db\u011b, o kterou doposud museli \u017e\u00e1dat jen prost\u0159ednictv\u00edm tzv. paragrafu 16 a ka\u017ed\u00e9 t\u0159i m\u011bs\u00edce m\u00edt obavu, jestli jim l\u00e9\u010dbu poji\u0161\u0165ovna schv\u00e1l\u00ed, \u010di nikoliv,\u201c<\/em> uzav\u00edr\u00e1 Bc. Anna Arellanesov\u00e1, p\u0159edsedkyn\u011b \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO).<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Narod\u00ed se jako zdrav\u00e1 miminka. V prvn\u00edm roce v\u0161ak dostanou sv\u016fj prvn\u00ed z\u00e1chvat, kter\u00fdch pak pro\u017eij\u00ed za \u017eivot stovky. Na vin\u011b je tzv. syndrom Dravetov\u00e9, <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=38604\" title=\"Des\u00edtky d\u011bt\u00ed \u017eij\u00ed s nemoc\u00ed, u n\u00ed\u017e radost m\u016f\u017ee zp\u016fsobit z\u00e1chvat\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":38606,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11,9],"tags":[],"class_list":["post-38604","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38604","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=38604"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38604\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/38606"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38604"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38604"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38604"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}