Ingaba ingqondo yomntwana wakho ayilunganga? Masifunde ngePorencephaly.

Kuqhelekile ukuba uzive uthwele umthwalo omkhulu xa oogqirha bekuxelela ngengxaki yokukhula kwengqondo yomntwana wakho. Ngamanye amaxesha, loo mazwi, ezo meko, aqhelekanga kuthi. Kaloku, kukho imeko engaqhelekanga ebizwa ngokuba yiPorencephaly osenokuba awuzange uve ngayo, kodwa kubalulekile ukuyazi. Masithethe ngale nto ngokulula, ngendlela onokuyiqonda, kulungile?

Yintoni kanye kanye le nto kuthiwa yi-porencephaly?

Ngamafutshane, i-porencephaly yimeko engaqhelekanga apho iingxowa okanye ii-cysts ezizaliswe lulwelo, okanye ii-cysts, zikhula kwi-hemispheres yobuchopho bomntwana ngenxa yomonakalo. Lo monakalo udla ngokuvela ngelixa umntwana esesesibelekweni okanye emva nje kokuzalwa. Cinga ngayo, ingqondo yethu yinto enzima kakhulu. Xa i-cyst yakheka ndaweni ithile kuyo, inokuchaphazela uphuhliso oluqhelekileyo kunye nokusebenza kwengqondo. Oku kunokubangela ukuba abanye abantwana babe neengxaki zokuthetha okanye ezinye iingxaki zemithambo-luvo .

Ixhaphake kangakanani le meko?

Enyanisweni, le meko ibizwa ngokuba yiPorencephaly ayiqhelekanga kakhulu . Akukho zibalo zichanekileyo malunga nokuba bangaphi abantwana emhlabeni abanayo. Kodwa inokuchaphazela amantombazana namakhwenkwe ngokulinganayo.

Ngaba kukho iintlobo eziphambili ze-porencephaly?

Ewe, kukho iintlobo ezimbini eziphambili zale nto.

• I-Acquired Porencephaly: Olu lolona hlobo luxhaphakileyo. Lubangelwa kukonakala kwengqondo ngexesha lokukhula kwengqondo yomntwana.
• I-Genetic Porencephaly: Le yimeko engaqhelekanga kakhulu. Inokubangelwa kukuguquka kwezakhi zofuzo .

Kutheni oku kusenzeka kumntwana wethu? Zithini izizathu?

Kukho izizathu ezahlukeneyo zoku. Ezi zizathu ziyahluka ngokuxhomekeke kwiintlobo ezimbini esizixubushe ngaphambili.

Izizathu zeMfuzo

Nangona ingaqhelekanga kakhulu, le meko inokubangelwa lutshintsho, okanye utshintsho lwezakhi zofuzo, kwiijini ezithile (umzekelo, iijini `COL4A1` okanye `COL4A2` ). Ezi jini zibaluleke kakhulu ekuveliseni iiproteni ezinika amandla okwakheka kwezicubu ezahlukeneyo emzimbeni wethu. Ngoko ke, ukuba kukho isiphene kwezi jini, sinokuchaphazela ukwakheka kwezicubu kwaye sibangele izinto ezifana nee-cysts ezikhankanyiweyo engqondweni.

Izizathu Ezifunyenweyo

Olu lolona hlobo luxhaphakileyo. Okwenzekayo apha kukuba ukuhamba kwegazi okuqhelekileyo engqondweni yomntwana kuyaphazamiseka. Oku kunokubangelwa yinto efana nestroke , ukunqongophala kweoksijini engqondweni, okanye ukopha engqondweni. Lo monakalo unokwenzeka ngelixa umntwana esesibelekweni, ekuzalweni, okanye emva kwexesha elide ezelwe.

Xa ingqondo ingenayo ioksijini okanye iphuma igazi, amathuba okukhula kwezicubu zobuchopho ayanda endaweni yezicubu zobuchopho eziqhelekileyo. Oku kuyinyani ngakumbi ukuba unezi zinto zilandelayo ezinobungozi :

• Ukusebenzisa utywala okanye iziyobisi ngexesha lokukhulelwa. Le yinto ekufuneka ithintelwe ngokuqinisekileyo.
• Isifo seswekile sokukhulelwa. Ukuba unale meko, kufuneka ulandele imiyalelo kagqirha wakho ngokuchanekileyo.
• Usulelo kumama ngexesha lokukhulelwa.
• Iintsholongwane ezenzeka emva kokuba umntwana ezelwe.
• Ukulimala ngexesha lokuzalwa.
• Ezinye izizathu eziphazamisa ukuhanjiswa kwegazi engqondweni ziquka ezinye iingxaki zegazi kunye nezifo zemetabolism .

Ngamanye amaxesha, oogqirha banokufumana umbono wesizathu esisisiseko ngokusekwe kwindawo apho ii-cysts zikhoyo, ubungakanani bazo, kunye nokuba zisasazeke kangakanani.

Zithini iimpawu zale meko? Siyibona njani?

Iimpawu ze-porencephaly zingahluka kumntwana ngamnye. Ziyahluka nakwindlela ezibukhali ngayo iimpawu kunye nexesha eziqala ngalo. Ukusilela kwemithambo-luvo kuxhomekeke ekubeni ii-cysts zikwindawo ephi engqondweni kwaye zikhulu kangakanani. Oku kufana nestroke.

Nazi ezinye zeempawu eziqhelekileyo:

• Ukulibaziseka kokuthetha nolwimi. Ngamanye amaxesha, abantwana banokulahlekelwa yikhono lokuthetha amagama njengoko bekhula.
• Ukulibaziseka kophuhliso lomzimba. Umzekelo, ukulibaziseka kokuqala ukuhamba.
• Uphuhliso lwengqondo olulibazisekileyo.
• Uphuhliso loluntu olulibazisekileyo.
• Intloko enkulu okanye encinci xa ithelekiswa nobukhulu bomzimba.
• Ukuncipha kwethoni yemisipha (Hypotonia). Umzimba womntwana usenokuziva utyhafile kakhulu.
• Ubuthathaka emzimbeni.
• Iingxaki zokucubungula ulwazi lweemvakalelo. Umzekelo, utshintsho kwindlela abantu abasabela ngayo xa bechukunyiswa okanye beva isandi.
• Ukuxhuzula. Oku sikwaziyo njengokuphazamiseka.

Into ebalulekileyo kukuba ayizizo zonke ezi mpawu ezikhoyo kumntwana ngamnye. Abanye abantwana banokuba nenye okanye ezimbini kuphela kwezi mpawu, ngelixa abanye banokuba nazo ezininzi.

Zeziphi ezinye iingxaki ezinokubangela oku?

Kwezinye iimeko, le porencephaly ibangela ukuba ulwelo olujikeleze ingqondo kunye nomqolo lube namafu, nto leyo ethetha ukubaImijelo ehamba ngayo i-cerebrospinal fluid (CSF) inokuvaleka. Oku kubangela ukuba ulwelo luqokeleleke kwaye ludale uxinzelelo olujikeleze ingqondo. Oku kubizwa ngokuba yi -hydrocephalus . Ukuba olu xinzelelo luyanda, iimpawu ezikhoyo zinokuba mandundu okanye kuvele iimpawu ezintsha. Umzekelo, iintloko ezibuhlungu, ukuhlanza, kunye neengxaki zokubona zinokubakho.

Kwakhona, kuba i-porencephaly inokubangela ukuxhuzula, aba bantwana banokuba nesifo sokuxhuzula . Abanye abantwana banokuba nesifo sokuqaqamba kwemisipha , esisifo apho izihlunu ziba lukhuni kwaye ziqine.

Oogqirha bayixilonga njani le nto?

Amaxesha amaninzi, abantwana abane-porencephaly babonisa iimpawu zale meko emva nje kokuzalwa. Abantwana abaninzi bafunyanwa benesi sifo bengekafiki nonyaka ubudala. Ngamanye amaxesha, la ma-cysts anokubonwa kwi- prenatal ultrasound scan ngelixa umntwana esesesibelekweni. Kwimeko enjalo, ugqirha unokuxilonga imeko ngaphambi kokuba umntwana azalwe.

Ukuqinisekisa ukuxilongwa, ugqirha kuya kufuneka abone imifanekiso eneenkcukacha zobuchopho bomntwana wakho. Ukuze wenze oku, wena okanye umntwana wakho kusenokufuneka nenziwe uvavanyo olufana nolu:

• Iskeni ye-ultrasound.
• Iskeni ye-CT.
• Iskeni ye-MRI.

Ngaba ikhona indlela yokunyanga oku? Iphathwa njani?

Inyaniso kukuba, akukho ndlela yonyango oluqinisekileyo lwe-porencephaly. Nangona kunjalo, kukho iindlela ezininzi zokulawula iziphumo zayo. Unyango lujolise kakhulu ekunciphiseni ukungasebenzi kakuhle kwemithambo-luvo okwenzekayo.

Umzekelo, ukuba unesifo esithe sathetha ngaso, i-hydrocephalus, ulwelo olugqithisileyo oluqokelelene engqondweni lungasuswa.

Nazi ezinye iindlela zonyango ezinokunceda umntwana:

• Amayeza okulwa nokuxhuzula. Lawula ukuqala kokuxhuzula.
• Amayeza okuphucula ukuqina kwemisipha.
• Amayeza okunciphisa iintlungu.
• Unyango lomzimba: Yomeleza izihlunu zomzimba kwaye wenze iintshukumo zibe lula.
• Unyango lokuthetha. Yoyisa ubunzima bokuthetha.
• Unyango lomsebenzi: Ziqhelise ukwenza imisebenzi yemihla ngemihla wedwa.
• Ngamanye amaxesha utyando lokususa i-cyst lunokwenziwa.
• Utyando lokukhupha ulwelo olugqithisileyo lobuchopho lunokwenziwa ukuze kususwe ulwelo olugqithisileyo lobuchopho.

Into ebalulekileyo kukuba ayizizo zonke ezi ndlela zonyango ezifunekayo kumntwana ngamnye. Oogqirha baza kugqiba ngolona nyango lufanelekileyo ngokwemeko yomntwana.

Liza kuba njani ikamva lomntwana onesi sifo? (Ingqikelelo)

Kunzima ukukutsho oku. Kuba abanye abantwana abane-porencephaly baba neengxaki ezithile ze-neurological. Kodwa abanye abantwana banokuphila ubomi obuqhelekileyo ngaphandle kweengxaki. Ubukhali beempawu buyahluka kakhulu ukusuka kumntu omnye ukuya komnye.

Ikamva lomntwana lixhomekeke kubukhulu bee-cysts engqondweni, indawo ezikuyo, inani lee-cysts, kunye nendlela ezichaphazela ngayo umntwana ngamnye. Nangona kunjalo, ngokufunyanwa kwangoko kunye nonyango olufanelekileyo kunye nonyango, abantwana abaninzi banokuphila ubomi obuphumelelayo nobunemveliso.

Ngaba iPorencephaly ingathintelwa?

Le meko ayinakuthintelwa rhoqo. Kuba kunzima kuthi ukulawula izinto ezibangelwa zizinto zemfuza. Nangona kunjalo, ukukhulelwa okunempilo kunokunciphisa umngcipheko wokuba umntwana wakho afumane le meko ukuya kuthi ga kwinqanaba elithile.

Kubaluleke kakhulu ukuphepha ukusebenzisa kakubi utywala okanye iziyobisi ngexesha lokukhulelwa. Ukuba unesifo seswekile sokukhulelwa, landela imiyalelo kagqirha wakho ngononophelo. Kufuneka uzame nokuzikhusela kwiintsholongwane.

I-Genetic Porencephaly yimeko enokudluliselwa emntwaneni ngamanye amaxesha ukuba omnye wabazali une -gene eguquliweyo . Uvavanyo lwe-genetic lunokunceda ekuqinisekiseni ukuba wena okanye iqabane lakho ninayo na i-gene. Ukuthetha nomcebisi we-genetic kunokukunceda uqonde umngcipheko wakho wokudlulisela i-gene emntwaneni wakho.

Ngawaphi amanye amaxesha ekufuneka uye kugqirha ngawo?

Ukuba umntwana wakho ufunyenwe ene-porencephaly okanye urhanelwa ukuba une-porencephaly, kufuneka ubone ugqirha ngokukhawuleza ukuba naziphi na kwezi mpawu zilandelayo ziyavela okanye ziya ziba mandundu:

• Intloko ebuhlungu
• Ukuhlanza
• Iingxaki ngokulinganisela okanye ukulungelelaniswa
• Ukuxhuzula/ukudibana
• Ukukhubazeka kwanoma yiphi na inxalenye yomzimba wabo
• Utshintsho lombono

Yeyiphi imibuzo ebalulekileyo ekufuneka uyibuze ugqirha?

Ungabuza ugqirha imibuzo efana nale:

• Ukuba sinomnye umntwana, mangakanani amathuba okuba loo mntwana abe ne-porencephaly?
• Ingaba licebo elihle ukuba usapho lwethu lwenze uvavanyo lwemfuza?
• Ngaba umntwana wam uza kufuna utyando lokususa amaqhuqhuva okanye ulwelo olugqithisileyo engqondweni yakhe?
• Ziziphi iindlela zonyango ezilungileyo zokunceda umntwana wam ajongane nokulibaziseka kokukhula?

Okokugqibela, nantsi into ethethwa ngabazali... (Umyalezo Wokubuyela Ekhaya)

I-Porencephaly yimeko engaqhelekanga kakhulu. Abantwana abanale meko banokuba nokukhubazeka ngokomzimba nangokwengqondo, ngamanye amaxesha okuncinci, ngamanye amaxesha okuqatha. Kodwa khumbula, xa kufunyaniswa isifo kwangethuba kunye nonyango olufunekayo kunye nonyango, abantwana abaninzi banokuphila ubomi obuhle, obonwabisayo nobunempumelelo. Awuwedwa, oogqirha, iingcali zonyango, kunye nabanye abaninzi bakhona ukunceda wena nomntwana wakho. Eyona nto ibalulekileyo kukungalahli ithemba kwaye unike umntwana wakho uthando, inkathalo, kunye nenkxaso ayidingayo.

I-Porencephaly , izifo zobuchopho, izifo zobuntwana, izifo zemfuza, izifo zemithambo-luvo, ukulibaziseka kokukhula