Ibhulogi yakamuva I-Complex-epilepsy nomndeni wethu usulungele ukufundwa ku-inthanethi lapha https://www.fireflyfriends.com/uk/blog/complex-epilepsy-and-our-family/Lapho ngiqala ukuzwa ukuthi ingane yami enezinyanga ezingu-18 'ivele' inesithuthwane futhi ukuhlolwa kwase kuqinisekisile ukuthi wayengenazo ezinye izimo ezingase zesabe kakhulu, ngazama ukucabanga kahle. Bengicabanga ukuquleka okumbalwa lapha noma laphaya, kodwa empeleni kuyisimo esivamile, esilawulekayo abantu abaningi abaphila naso.Ayikasithatheli leyo ndlela, ngeshwa. Intombazanyana yami (uTaz, igama-mbumbulu) manje eneminyaka engu-8, inesifo sokuwa esiyinkimbinkimbi esilawula ukuphila komkhaya wakithi.Unesimo esibizwa nge-Lennox Gastuat Syndrome. Intombazane yethu enhle inezinhlobo eziningi zokuwa, i-tonic clonics, i-atonic (i-drop seizures), i-focal seizures, ukungabikho, ukubanjwa kwe-tonic, i-myoclonic sezures kanye nokubanjwa kokungabikho okungavamile. Kunalokho kuwuhlu olude.Ukubuka ingane yakho idlula kulokhu kubuhlungu ngendlela emangalisayo.Manje sengiyiqonda ngempela incazelo yegama elithi ubuhlungu benhliziyo, nokuthi lokho kungaba ngokomzimba kangakanani.Sibe nohambo oluningi, oluningi lwama-ambulensi kanye nokulaliswa esibhedlela. Ukushayela ku-999 manje sekuwumkhuba kithi, akusabalulekile izindaba. Uma i-ambulensi isesitaladini sethu, iningi lomakhelwane bethu lizocabanga ukuthi ngeye-Taz. Isifo sokuwa esiyinkimbinkimbi njengalesi yisimo esesabekayo ukuphila naso.Yisilwane esikwazi ukugxuma siphume emthunzini noma nini.Njengomuntu onenkinga yokukhathazeka ekhona futhi ogxuma ku-toaster ephumayo, kuyindlela enzima ukuyinyathela. Sesikushilo lokho, sinezikhathi eziningi ezijabulisayo futhi ngesikhathi siphila nalesi sifo esishintshashintshayo sihlangabezane nomusa omkhulu nokusekelwa.Uma u-Taz engadli ngokuquleka uthanda ukudlala, ukugibela i-unicorn, ukugxuma, ukugijima futhi ayobhukuda.U-Taz usedlule ezidakamizweni ezingaba yi-10 futhi njengamanje uthatha ezi-4, une-vagus nerve stimulator futhi udla ukudla kwe-ketogenic yezokwelapha (iba ne-google yalezo ezimbili zokugcina uma ufuna ukwazi okwengeziwe). Akukho okusebenzayo ukuvimba ukuquleka kwakhe.Enye inhlansi yethemba insangu yezokwelapha.Izingane ezintathu e-UK zinencwadi kadokotela yalokhu ngemuva kokuthi iphinde yasemthethweni ngo-2018 kodwa okwamanje kunezinkinga ezinkulu ngodokotela abayichazayo. Sicela uchithe isikhashana ubheke ku-https://endourpain.org ukuze uthole okwengeziwe.Kufanele ngibe ngummeli oqinile wendodakazi yami; esibhedlela uma kuziwa ezidakamizweni ezinikezwayo, esikoleni mayelana nokunakekelwa kwakhe kanye nokunakekelwa kwezenhlalakahle ukuqinisekisa ukuthi sinokwesekwa akudingayo. Kuyakhathaza kodwa ngiyalibona ilungelo lami lokukwazi ukwenza lokhu.Ukuqina kuka-Taz kuyamangalisa futhi ukumbona egxumagxuma ngemva kweziqephu futhi ebuyela ku-unicorn yakhe kuyangimangaza ngaso sonke isikhathi - uwumlingo nje.Ukuze uthole ulwazi olwengeziwe mayelana nesifo sokuwa vakashela: Ikhaya - Isenzo Sesifo sokuwaOkuthunyelwe Isifo sokuwa esiyinkimbinkimbi nomndeni wethu sivele kuqala Ku-Firefly Blog.************ https://www.fireflyfriends.com/uk/blog/special-needs/
