{"id":52670,"date":"2024-10-23T19:25:27","date_gmt":"2024-10-23T17:25:27","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=52670"},"modified":"2024-10-23T19:25:28","modified_gmt":"2024-10-23T17:25:28","slug":"vzacny-syndrom-zpusobuje-desitky-zachvatu-denne","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=52670","title":{"rendered":"Vz\u00e1cn\u00fd syndrom zp\u016fsobuje des\u00edtky z\u00e1chvat\u016f denn\u011b"},"content":{"rendered":"\n

Spr\u00e1vn\u00e1 l\u00e9\u010dba m\u016f\u017ee pacient\u016fm v\u00fdrazn\u011b ulevit<\/em><\/p>\n\n\n\n

Praha, 23. 10. 2024 \u2013 A\u017e des\u00edtky epileptick\u00fdch z\u00e1chvat\u016f denn\u011b \u2013 nejen to musej\u00ed p\u0159ekonat pacienti, kte\u0159\u00ed bojuj\u00ed s Lennoxov\u00fdm-Gastautov\u00fdm syndromem (LGS). Z\u00e1va\u017en\u00e9 neurologick\u00e9 onemocn\u011bn\u00ed postihuje nej\u010dast\u011bji d\u011bti kolem 3 let v\u011bku. Projevuje se epileptick\u00fdmi z\u00e1chvaty r\u016fzn\u00e9ho typu, syndrom prov\u00e1z\u00ed tak\u00e9 ment\u00e1ln\u00ed posti\u017een\u00ed a dal\u0161\u00ed zdravotn\u00ed komplikace. Podle odhad\u016f v \u010cesku onemocn\u011bn\u00edm trp\u00ed ni\u017e\u0161\u00ed stovky pacient\u016f. N\u011bkdy si ale diagn\u00f3zu vyslechnou pozd\u011b \u2013 a\u017e v dosp\u011blosti. Spr\u00e1vn\u011b zac\u00edlen\u00e1 l\u00e9\u010dba jim p\u0159itom m\u016f\u017ee v\u00fdrazn\u011b usnadnit \u017eivot. A nejen jim, ale i rodin\u00e1m, kter\u00e9 se doma o pacienty nep\u0159etr\u017eit\u011b staraj\u00ed. L\u00e9ka\u0159i na to upozor\u0148uj\u00ed u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne LGS, kter\u00fd p\u0159ipad\u00e1 na 1. listopadu.<\/strong><\/p>\n\n\n\n

\u201eLennox\u016fv-Gastaut\u016fv syndrom \u0159ad\u00edme mezi t\u011b\u017ek\u00e9 formy epilepsie. Typick\u00fdm p\u0159\u00edznakem jsou no\u010dn\u00ed tonick\u00e9 z\u00e1chvaty, p\u0159i kter\u00fdch pacienti ve sp\u00e1nku dost\u00e1vaj\u00ed nekontrolovateln\u00e9 k\u0159e\u010de do kon\u010detin a\u00a0trupu. Trvat mohou jen n\u011bkolik vte\u0159in, proto n\u011bkdy b\u00fdv\u00e1 obt\u00ed\u017en\u00e9 je odhalit. Pacienti ale krom\u011b nich trp\u00ed \u0159adou dal\u0161\u00edch epileptick\u00fdch z\u00e1chvat\u016f. Za den jich mohou prod\u011blat a\u017e n\u011bkolik des\u00edtek,\u201c <\/em>\u0159\u00edk\u00e1 MUDr. Martin Kudr, Ph.D., z Kliniky d\u011btsk\u00e9 neurologie 2. LF UK a FN Motol.<\/p>\n\n\n\n


Vz\u00e1cn\u00fd epileptick\u00fd syndrom v\u00a0\u010cesku postihuje ni\u017e\u0161\u00ed stovky lid\u00ed. Objevuje se obvykle od 1 roku do 10 let v\u011bku d\u00edt\u011bte. Pro\u010d onemocn\u011bn\u00ed vznik\u00e1, nen\u00ed v\u017edy snadn\u00e9 ur\u010dit. \u201eP\u0159\u00ed\u010din m\u016f\u017ee b\u00fdt v\u00edcero. Nej\u010dast\u011bji se setk\u00e1v\u00e1me s\u00a0pacienty, u kter\u00fdch do\u0161lo k\u00a0\u010dasn\u00e9mu po\u0161kozen\u00ed mozku, nap\u0159\u00edklad v\u00a0d\u016fsledku vrozen\u00e9 v\u00fdvojov\u00e9 vady nebo prod\u011bl\u00e1n\u00ed jin\u00e9 nemoci. Existuje ale velk\u00e1 skupina d\u011bt\u00ed, u n\u00ed\u017e p\u0159edpokl\u00e1d\u00e1me genetick\u00e9 p\u0159\u00ed\u010diny,\u201c <\/em>p\u0159ibli\u017euje d\u011btsk\u00fd neurolog. Krom\u011b t\u011b\u017ek\u00e9 epilepsie se pacienti s\u00a0LGS pot\u00fdkaj\u00ed tak\u00e9 s\u00a0ment\u00e1ln\u00ed retardac\u00ed a mohou trp\u011bt i dal\u0161\u00edmi zdravotn\u00edmi obt\u00ed\u017eemi \u2013 mimo jin\u00e9 \u00fazkostmi \u010di depresemi, \u010dast\u00e9 jsou tak\u00e9 t\u011b\u017ek\u00e9 v\u00fdchovn\u00e9 probl\u00e9my jako t\u0159eba agresivita. \u201ePro rodinu je to obrovsk\u00e1 z\u00e1t\u011b\u017e. S\u00a0d\u00edt\u011btem mus\u00ed v\u017edy n\u011bkdo z\u016fstat doma, proto\u017ee pacienti s\u00a0LGS vy\u017eaduj\u00ed nep\u0159etr\u017eitou p\u00e9\u010di,\u201c<\/em> upozor\u0148uje MUDr. Kudr.<\/p>\n\n\n\n

Vhodn\u011b zac\u00edlen\u00e1 l\u00e9\u010dba um\u00ed pacient\u016fm i jejich rodin\u00e1m v\u00fdrazn\u011b uleh\u010dit. \u201eJe velmi d\u016fle\u017eit\u00e9 syndrom spr\u00e1vn\u011b diagnostikovat. Na trhu m\u00e1me 20 r\u016fzn\u00fdch l\u00e9k\u016f na epileptick\u00e9 z\u00e1chvaty, p\u0159i\u010dem\u017e v\u00edme, \u017ee n\u011bkter\u00e9 z nich zab\u00edraj\u00ed na LGS l\u00e9pe ne\u017e jin\u00e9,\u201c<\/em> \u0159\u00edk\u00e1 d\u011btsk\u00fd neurolog. Pomoc mohou naj\u00edt i dosp\u011bl\u00ed pacienti, kte\u0159\u00ed se cel\u00fd \u017eivot l\u00e9\u010d\u00ed \u201epouze\u201c s epilepsi\u00ed. \u201eJe \u0159ada dosp\u011bl\u00fdch pacient\u016f, kte\u0159\u00ed Lennox\u016fv\u2011Gastaut\u016fv syndrom maj\u00ed, ale nikdy jim nebyl diagnostikov\u00e1n. Tito lid\u00e9 trp\u00ed velmi z\u00e1va\u017en\u00fdmi kombinovan\u00fdmi posti\u017een\u00edmi, kter\u00e1 jsou spojen\u00e1 s ment\u00e1ln\u00ed retardac\u00ed, poruchami chov\u00e1n\u00ed \u010di motorick\u00fdmi obt\u00ed\u017eemi. V dosp\u011blosti b\u00fdvaj\u00ed n\u011bkdy v p\u00e9\u010di soci\u00e1ln\u00edch za\u0159\u00edzen\u00ed, kde m\u016f\u017ee b\u00fdt p\u0159esn\u00e1 diagnostika obt\u00ed\u017en\u00e1 \u2013 t\u0159eba proto, \u017ee person\u00e1l nezachyt\u00ed no\u010dn\u00ed z\u00e1chvaty. Pokud se ale i u t\u011bchto pacient\u016f poda\u0159\u00ed syndrom odhalit, m\u016f\u017eeme pomoc\u00ed vhodn\u00e9 l\u00e9\u010dby zlep\u0161it kvalitu jejich \u017eivota,\u201c<\/em> uv\u00e1d\u00ed MUDr. Jana Z\u00e1rubov\u00e1 z Neurologick\u00e9 kliniky 2. LF UK a Centra pro epilepsie FN Motol.<\/p>\n\n\n\n

D\u00edky spr\u00e1vn\u00e9 kombinaci l\u00e9k\u016f jsou l\u00e9ka\u0159i u pacient\u016f schopni sn\u00ed\u017eit po\u010det z\u00e1chvat\u016f z\u00a0n\u011bkolika des\u00edtek denn\u011b a\u017e nap\u0159\u00edklad na jeden t\u00fddn\u011b. \u201eU takto t\u011b\u017ek\u00e9ho epileptick\u00e9ho syndromu nejsme schopni dos\u00e1hnout \u00fapln\u00e9ho vymizen\u00ed z\u00e1chvat\u016f. M\u016f\u017eeme ale v\u00fdrazn\u011b omezit jejich v\u00fdskyt,\u201c<\/em> vysv\u011btluje d\u011btsk\u00fd neurolog. Podle MUDr. Z\u00e1rubov\u00e9 men\u0161\u00ed po\u010det z\u00e1chvat\u016f p\u0159isp\u00edv\u00e1 i k\u00a0celkov\u00e9mu zlep\u0161en\u00ed ment\u00e1ln\u00edho stavu posti\u017een\u00fdch. \u201eStejn\u011b jako st\u00e1rnou pacienti, st\u00e1rnou i jejich pe\u010dovatel\u00e9 \u2013 rodi\u010de. S\u00edly s\u00a0p\u0159ib\u00fdvaj\u00edc\u00edm v\u011bkem ub\u00fdvaj\u00ed. A je velk\u00fd rozd\u00edl, pokud m\u00e1 jejich dosp\u011bl\u00e9 d\u00edt\u011b deset z\u00e1chvat\u016f za den nebo jeden za t\u00fdden, a rodi\u010de s\u00a0n\u00edm zvl\u00e1dnou j\u00edt k\u00a0doktorovi nebo do zoo bez obav, \u017ee jen cestou prod\u011blaj\u00ed \u010dty\u0159i epizody.\u201c<\/em> <\/p>\n\n\n\n

Rodina m\u016f\u017ee tak\u00e9 sn\u00e1z po\u017e\u00e1dat o asistenty, kte\u0159\u00ed jim na chvilku odleh\u010d\u00ed v\u00a0jejich p\u00e9\u010di. \u201eSni\u017euje se i riziko poran\u011bn\u00ed p\u0159i z\u00e1chvatech a nutnost n\u00e1sledn\u00e9 hospitalizace, kter\u00e1 je v\u017edy pro pacienty, rodi\u010de a person\u00e1l v\u00a0nemocnici velmi n\u00e1ro\u010dn\u00e1. D\u00edky spr\u00e1vn\u00e9 l\u00e9\u010db\u011b jsme schopni nejenom zkvalitnit \u017eivot pacient\u016f s\u00a0LGS, ale tak\u00e9 ho prodlou\u017eit,\u201c<\/em> vysv\u011btluje MUDr. Z\u00e1rubov\u00e1. Rodin\u00e1m posti\u017een\u00fdch doporu\u010duje neurolo\u017eka obr\u00e1tit se na neziskovou organizaci EpiStop<\/a> z.s., kter\u00e1 dlouhodob\u011b pom\u00e1h\u00e1 zlep\u0161ovat p\u00e9\u010di o lidi s\u00a0epilepsi\u00ed.<\/p>\n\n\n\n

U n\u011bkter\u00fdch pacient\u016f ale l\u00e9ky nepom\u00e1haj\u00ed. Lennox\u016fv-Gastaut\u016fv syndrom pat\u0159\u00ed mezi tzv.\u00a0farmakorezistentn\u00ed onemocn\u011bn\u00ed, co\u017e znamen\u00e1, \u017ee navzdory tomu, \u017ee lid\u00e9 u\u017e\u00edvaj\u00ed spr\u00e1vnou kombinaci l\u00e9k\u016f, nad\u00e1le trp\u00ed nekontrolovateln\u00fdmi epileptick\u00fdmi z\u00e1chvaty. Jako dopl\u0148kov\u00e1 l\u00e9\u010dba se proto u t\u011bchto pacient\u016f pou\u017e\u00edv\u00e1 vagov\u00fd stimul\u00e1tor. \u201eJde o za\u0159\u00edzen\u00ed podobn\u00e9 kardiostimul\u00e1toru. Jeho elektroda ale m\u00edsto do srdce vede na bloudiv\u00fd nerv. V\u00a0pravideln\u00fdch intervalech se tento nerv stimuluje a tato stimulace je p\u0159iv\u00e1d\u011bna do mozku, co\u017e vede ke sn\u00ed\u017een\u00ed po\u010dtu z\u00e1chvat\u016f. U n\u011bkter\u00fdch pacient\u016f s\u00a0LGS tento typ l\u00e9\u010dby velmi dob\u0159e funguje,\u201c<\/em> dopl\u0148uje MUDr. Kudr.<\/p>\n\n\n\n

Kl\u00ed\u010dem k\u00a0odhalen\u00ed syndromu jsou podle l\u00e9ka\u0159\u016f t\u0159i z\u00e1kladn\u00ed krit\u00e9ria: no\u010dn\u00ed tonick\u00e9 z\u00e1chvaty v\u00a0kombinaci s\u00a0dal\u0161\u00edmi typy epileptick\u00fdch z\u00e1chvat\u016f, ment\u00e1ln\u00ed retardace a charakteristick\u00fd obraz v\u00a0EEG\u00a0(elektroencefalografick\u00e9m) vy\u0161et\u0159en\u00ed. \u201ePokud pacient spl\u0148uje v\u0161echny tyto podm\u00ednky, m\u011bli by d\u011bt\u0161t\u00ed neurologov\u00e9 a neurologov\u00e9 LGS diagnostikovat bez v\u011bt\u0161\u00edch pot\u00ed\u017e\u00ed,\u201c<\/em> dod\u00e1v\u00e1 d\u011btsk\u00fd neurolog.<\/p>\n","protected":false},"excerpt":{"rendered":"

Spr\u00e1vn\u00e1 l\u00e9\u010dba m\u016f\u017ee pacient\u016fm v\u00fdrazn\u011b ulevit Praha, 23. 10. 2024 \u2013 A\u017e des\u00edtky epileptick\u00fdch z\u00e1chvat\u016f denn\u011b \u2013 nejen to musej\u00ed p\u0159ekonat pacienti, kte\u0159\u00ed bojuj\u00ed s […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":52671,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-52670","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\/52670","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=52670"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/52670\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/52671"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=52670"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=52670"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=52670"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}