Na span\u00ed d\u011bt\u00ed u\u00a0rodi\u010d\u016f nahl\u00ed\u017e\u00ed n\u011bkte\u0159\u00ed lid\u00e9 skrz prsty. Dnes p\u011btilet\u00fd Teo v\u0161ak p\u0159e\u017eil pr\u00e1v\u011b d\u00edky tomu, \u017ee nespal v\u00a0osudnou noc v\u00a0post\u00fdlce, ale po boku sv\u00e9 maminky. Dostal toti\u017e epileptick\u00fd z\u00e1chvat. Jen d\u00edky okam\u017eit\u00e9mu z\u00e1sahu rodi\u010d\u016f a n\u00e1sledn\u00e9mu p\u0159evozu do nemocnice je dnes na\u017eivu. V\u0161e m\u00e1 na sv\u011bdom\u00ed nemoc, kterou m\u00e1 jen deset lid\u00ed na\u00a0sv\u011bt\u011b.<\/p>\n\n\n\n
\u201eTeo\u0161ku, dob\u0159e to dopadne,\u201c stoj\u00ed v\u00a0\u00favodu sb\u00edrky, kterou pro sv\u00e9ho p\u011btilet\u00e9ho syna Tea zalo\u017eila na platform\u011b\u00a0Donio\u00a0jeho maminka Eva Fouskov\u00e1. V\u00a0kojeneck\u00e9m v\u011bku pro\u017eil jej\u00ed dnes p\u011btilet\u00fd syn sv\u016fj prvn\u00ed epileptick\u00fd z\u00e1chvat.<\/p>\n\n\n\n
I\u00a0p\u0159esto, \u017ee chlapec musel b\u00fdt zpo\u010d\u00e1tku uveden do um\u011bl\u00e9ho sp\u00e1nku, je dnes na\u017eivu. Ov\u0161em s\u00a0\u0159adou komplikac\u00ed. L\u00e9ky epileptick\u00e9 z\u00e1chvaty sice utlumily, ale Tea siln\u011b poznamenaly. Ve sv\u00e9m v\u011bku nemluv\u00ed, ud\u011bl\u00e1 jen p\u00e1r krok\u016f a nad\u011bje na vyl\u00e9\u010den\u00ed prakticky neexistuje. Aby mohl \u017e\u00edt alespo\u0148 trochu norm\u00e1ln\u00ed\u00a0\u017eivot, mus\u00ed na sob\u011b tvrd\u011b d\u0159\u00edt.<\/p>\n\n\n\n
Prvn\u00ed epileptick\u00fd z\u00e1chvat m\u011bl Teo, kdy\u017e mu bylo teprve jeden\u00e1ct m\u011bs\u00edc\u016f. M\u011bl tenkr\u00e1t velk\u00e9 \u0161t\u011bst\u00ed, \u017ee\u00a0spal\u00a0zrovna v\u00a0posteli\u00a0vedle sv\u00e9 maminky. Mohl proto b\u00fdt urychlen\u011b p\u0159evezen sanitkou do nemocnice. Tam se ov\u0161em jeho\u00a0zdravotn\u00ed\u00a0stav natolik zhor\u0161il, \u017ee musel b\u00fdt uveden do um\u011bl\u00e9ho sp\u00e1nku. N\u00e1sledn\u011b byl p\u0159ijat na anesteziologick\u00e9 a resuscita\u010dn\u00ed odd\u011blen\u00ed (ARO), kter\u00e9 je ur\u010den\u00e9 pro pacienty, u\u00a0nich\u017e selhaly z\u00e1kladn\u00ed \u017eivotn\u00ed funkce, nebo jejich selh\u00e1n\u00ed hroz\u00ed.<\/p>\n\n\n\n
\u201ePevn\u011b jsme v\u011b\u0159ili, \u017ee prvn\u00ed z\u00e1chvat, kter\u00fd Teo prod\u011blal, byl i\u00a0ten posledn\u00ed. Bohu\u017eel jsme to v\u0161ak od t\u00e9 doby za\u017eili je\u0161t\u011b mnohokr\u00e1t. V\u011bt\u0161inou Tea museli uv\u00e9st do um\u011bl\u00e9ho sp\u00e1nku a okam\u017eit\u011b sanitkou nebo vrtuln\u00edkem p\u0159epravit z\u00a0Jesen\u00edku na specializovan\u00e9 odd\u011blen\u00ed do Olomouce nebo Ostravy,\u201c popisuje zku\u0161enost s\u00a0\u017eivot ohro\u017euj\u00edc\u00edmi z\u00e1chvaty Teova maminka.<\/p>\n\n\n\n
V\u00a0den, kdy pro\u017eil Teo sv\u016fj prvn\u00ed z\u00e1chvat, mu byl poprv\u00e9 pod\u00e1n i\u00a0l\u00e9k na epilepsii. Ten sice na n\u011bjak\u00fd \u010das zabr\u00e1nil dal\u0161\u00edm z\u00e1chvat\u016fm, ale z\u00e1rove\u0148 zabrzdil i\u00a0chlapc\u016fv v\u00fdvoj. Teo absolvoval tak\u00e9 s\u00e9rii n\u011bkolika vy\u0161et\u0159en\u00ed. V\u00a0roce a p\u016fl mu na jejich z\u00e1klad\u011b l\u00e9ka\u0159i diagnostikovali onemocn\u011bn\u00ed, kter\u00e9 m\u00e1 jen 10\u00a0lid\u00ed na sv\u011bt\u011b.<\/p>\n\n\n\n
\u201eV\u00a0Teov\u011b roce a p\u016fl n\u00e1m bylo sd\u011bleno, \u017ee byla u\u00a0syna nalezena mutace genu\u00a0CACNA1A\u00a0(p.Val1396met),\u201c vyslovuje nesnadno zapamatovateln\u00fd n\u00e1zev onemocn\u011bn\u00ed Teova maminka.<\/p>\n\n\n\n
\u201eTehdy n\u00e1m pan\u00ed doktorka na genetice \u0159ekla, \u017ee zcela shodn\u00e1 mutace, kterou m\u00e1 Teo, byla doposud pops\u00e1na jen u 10 lid\u00ed na sv\u011bt\u011b,\u201c pokra\u010duje.<\/p>\n\n\n\n
Postupn\u011b tak byly chlapci p\u0159edepisov\u00e1ny dal\u0161\u00ed l\u00e9ky, kter\u00e9 m\u011bly l\u00e9pe kontrolovat a tlumit epileptick\u00e9 z\u00e1chvaty. Maj\u00ed ov\u0161em mnoho ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f ovliv\u0148uj\u00edc\u00edch celkov\u00fd v\u00fdvoj, chov\u00e1n\u00ed,\u00a0sp\u00e1nek, rovnov\u00e1hu i\u00a0rozvoj \u0159e\u010di. V\u00a0p\u011bti letech m\u00e1 kv\u016fli onemocn\u011bn\u00ed Teo probl\u00e9m i\u00a0s\u00a0ch\u016fz\u00ed.<\/p>\n\n\n\n
Probl\u00e9mem p\u0159i l\u00e9\u010db\u011b Teova onemocn\u011bn\u00ed je tak\u00e9 sn\u00ed\u017een\u00e1 imunita. Oby\u010dejn\u00e1 r\u00fdma mu dok\u00e1zala v minulosti vyvolat dal\u0161\u00ed z\u00e1chvaty s nutnost\u00ed p\u0159evozu na ARO. I kontakt s lehce nemocn\u00fdm d\u00edt\u011btem tak m\u016f\u017ee Tea doslova ohrozit na \u017eivot\u011b.<\/p>\n\n\n\n
\u201eSetk\u00e1n\u00ed s\u00a0nachlazenou hol\u010di\u010dkou Teovi zp\u016fsobilo t\u011b\u017ek\u00fd z\u00e1pal plic s\u00a0dvout\u00fddenn\u00ed hospitalizac\u00ed, kapa\u010dkami a antibiotiky. Teo m\u00e1 tak\u00e9 velmi slab\u00e9 \u017e\u00edly. N\u011bkdy je pot\u0159eba p\u00edchnout ho i\u00a0\u010dty\u0159ikr\u00e1t, ne\u017e se poda\u0159\u00ed zav\u00e9st kanylu nebo odebrat krev,\u201c popisuje maminka zdravotn\u00ed stav chlapce, kter\u00fd mus\u00ed b\u00fdt kv\u016fli opakovan\u00fdm nemocem \u010dasto doma nebo po nemocnic\u00edch.<\/p>\n\n\n\n
Pom\u00e1hat rodi\u010d\u016fm se vehementn\u011b sna\u017e\u00ed i babi\u010dky, ale na samostatn\u00e9 hl\u00edd\u00e1n\u00ed chlapce si \u017e\u00e1dn\u00e1 z nich netroufne. Nejen\u017ee m\u00e1 kv\u016fli onemocn\u011bn\u00ed probl\u00e9my s us\u00edn\u00e1n\u00edm a ob\u010das zabere a\u017e o p\u016flnoci, ale vy\u017eaduje tak\u00e9 nep\u0159etr\u017eit\u00fd dohled.<\/p>\n\n\n\n
\u201eU Teo\u0161ka mus\u00edme d\u00e1vat velk\u00fd pozor, aby nespadl a neude\u0159il se do hlavy. I to v minulosti spustilo epileptick\u00fd z\u00e1chvat. Jeho sest\u0159i\u010dka ho radostn\u011b objala, co\u017e Teo neust\u00e1l a p\u0159i p\u00e1du se ude\u0159il hlavou do kuchy\u0148sk\u00e9 linky,\u201c pokra\u010duje maminka.<\/p>\n\n\n\n
V\u00a0p\u011bti letech kv\u016fli sv\u00e9mu onemocn\u011bn\u00ed Teo nedok\u00e1\u017ee mluvit, chod\u00ed s\u00a0velkou nejistotou, a to je\u0161t\u011b jen na velmi kr\u00e1tk\u00e9 vzd\u00e1lenosti. Na del\u0161\u00ed proch\u00e1zky vyu\u017e\u00edvaj\u00ed rodi\u010de ko\u010d\u00e1rek nebo ho nos\u00ed \u201ena koni\u201c.<\/p>\n\n\n\n
\u201eTeo\u0161ek pro sv\u016fj dal\u0161\u00ed v\u00fdvoj a zlep\u0161en\u00ed pot\u0159ebuje n\u00e1kladn\u00e9 neurorehabilitace a mnoho potravinov\u00fdch dopl\u0148k\u016f. Cht\u011bli bychom zkusit intenzivn\u00ed lekce\u00a0Feldenkraisovy metody, kter\u00e9 by Teovi pomohly s\u00a0v\u00fdvojem. Tak\u00e9 bychom cht\u011bli vyzkou\u0161et neurofeedback (p\u0159\u00edm\u00e9 cvi\u010den\u00ed mozkov\u00fdch funkc\u00ed, kter\u00e9 se zam\u011b\u0159uje na tr\u00e9nink zm\u011bny mozkov\u00fdch vln; pozn. red.<\/em>). Ten se doporu\u010duje i\u00a0jako alternativn\u00ed l\u00e9\u010dba epilepsie, kter\u00e1 dok\u00e1\u017ee sni\u017eovat z\u00e1chvaty,\u201c popisuje l\u00e9\u010debn\u00fd postup maminka ve sb\u00edrce na\u00a0Donio.<\/a><\/p>\n\n\n\n P\u0159isp\u011bt v\u00a0r\u00e1mci sb\u00edrky\u00a0\u201eTeo\u0161ku, dob\u0159e to dopadne\u201c m\u016f\u017eete\u00a0ZDE: https:\/\/www.donio.cz\/teosku-dobre-to-dopadne<\/a><\/p>\n\n\n\n Pen\u00edze\u00a0ze sb\u00edrky by rodina pou\u017eila na intenzivn\u00ed neurorehabilitace a jmenovan\u00e9 terapie, monitor epileptick\u00fdch z\u00e1chvat\u016f, inhal\u00e1tor, komunik\u00e1tor, hiporehabilitace, doj\u00ed\u017ed\u011bn\u00ed k\u00a0l\u00e9ka\u0159\u016fm, odleh\u010dovac\u00ed slu\u017eby a dal\u0161\u00ed terapie, kter\u00e9 jsou l\u00e9ka\u0159em doporu\u010dov\u00e1ny, nebo se o\u00a0nich rodina dozv\u00ed v\u00a0pr\u016fb\u011bhu sb\u00edrky.<\/p>\n\n\n\n Den\u00edk.cz<\/p>\n\n\n\n https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Na span\u00ed d\u011bt\u00ed u\u00a0rodi\u010d\u016f nahl\u00ed\u017e\u00ed n\u011bkte\u0159\u00ed lid\u00e9 skrz prsty. Dnes p\u011btilet\u00fd Teo v\u0161ak p\u0159e\u017eil pr\u00e1v\u011b d\u00edky tomu, \u017ee nespal v\u00a0osudnou noc v\u00a0post\u00fdlce, ale po boku […]<\/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":[9],"tags":[],"class_list":["post-49337","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49337","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=49337"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49337\/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=49337"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49337"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49337"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}