Noma yimuphi umzali uyashaqeka ukuzwa ukuthi ingane yakhe inesifo esingavamile kakhulu sezokwelapha. Kuwumuzwa ongenakuzisiza nhlobo. Kodwa-ke, ngokuthuthuka kwezokwelapha zanamuhla, kunezindlela zokwelapha ezinye izimo ezazicatshangwa ukuthi azinakwelashwa namuhla. Namuhla sizokhuluma ngomuthi wokugomela okhethekile obizwa ngokuthi i-Fosdenopterin, osetshenziselwa esinye sezifo ezingavamile kodwa ezinzima zofuzo, 'i-Molybdenum Cofactor Deficiency Type A'.
Kalula nje, luyini uhlobo A lwe-Molybdenum Cofactor Deficiency?
Leli igama eliyinkimbinkimbi kancane, kodwa masiligcine lilula. Ake sithi imizimba yethu iyifektri enkulu. Le fektri inemishini emincane (ama-enzyme) enza imisebenzi eyahlukahlukene. Ukuze le mishini isebenze kahle, idinga isesekeli esikhethekile (i-cofactor). I-molybdenum cofactor ingenye yezisesekeli ezibaluleke kakhulu.
Izingane ezinesimo sofuzo esibizwa ngokuthi i-Molybdenum Cofactor Deficiency Type A azikwazi ukukhiqiza lesi sakhi. Ngemuva kwalokho imishini kuleyo fektri iyayeka ukusebenza. Ngenxa yalokho, amakhemikhali ayingozi, anobuthi (isibonelo, ama-sulfite) aqala ukuqongelela ebuchosheni nasemzimbeni. Lokhu kungabangela ingane ukuba ibe nezinkinga ezinkulu zemizwa, ukuquleka, ngisho nokufa.
Kwenzekani ngomuthi wokugomela i-Fosdenopterin?
Yilapho umuthi i-Fosdenopterin (igama lomkhiqizo: i-Nulibry) usisiza khona. Akuyona ikhambi lazo zonke lezi zinkinga, kodwa wenza into ebaluleke kakhulu.
Kalula nje, lo muthi wokugomela uhlinzeka ngengxenye ebalulekile umzimba wengane ongakwazi ukuyikhiqiza, ebizwa ngokuthi i-cyclic pyranopterin monophosphate (cPMP) .
Uma lokhu kunikezwa, imishini engasebenzi (ama-enzyme) emzimbeni iqala ukusebenza futhi. Bese ukuqongelela kwalawo makhemikhali anobuthi kuyayeka, bese eqala ukukhishwa emzimbeni. Ngakho-ke, kusiza kakhulu ekunciphiseni ingozi yokufa ngenxa yesifo. Ngakho-ke, lokhu kufana nesipho sokuphila enganeni efana nale.
Qiniseka ukuthi utshela udokotela wakho lezi zinto ngaphambi kokuqala ukwelashwa.
Ngaphambi kokunikeza ingane yakho lo muthi, kubaluleke kakhulu ukuthi ithimba lezokwelapha liqaphele izinto ezithile. Xoxa ngolwazi olulandelayo ngokucacile nodokotela wakho.
| Indaba okufanele ifundiswe | Kungani lokho kubalulekile? |
|---|---|
| Ukungezwani komzimba | Uma ingane yakho inomdlavuza we-fosdenopterin noma yimuphi omunye umuthi, ukudla, noma idayi, qiniseka ukuthi uyakhuluma ngakho. |
| Ukukhulelwa noma ukulindela umntwana | Nakuba lo muthi uvame ukunikezwa izinsana ezisanda kuzalwa, udokotela kufanele aziswe uma umuntu othola ukwelashwa ekhulelwe noma ezama ukukhulelwa. |
| Ukuncelisa | Uma umama othola ukwelashwa encelisa, kubaluleke kakhulu ukuxoxa ngalokhu nodokotela. |
Uyisebenzisa kanjani le mithi?
I-Fosdenopterin iwumjovo ofakwa emthanjeni . Ngokuvamile unikezwa esibhedlela noma emtholampilo ngabasebenzi bezokwelapha abaqeqeshiwe. Kodwa-ke, ngezinye izikhathi, udokotela wakho angase akuyale ukuba unikeze umjovo ekhaya.
- Phatha ngesikhathi: Kubaluleke kakhulu ukunikeza lo muthi wokugoma ngesikhathi esifanayo nsuku zonke, njengoba nje udokotela wakho ekuyalele. Qhubeka nokwelashwa kuze kube yilapho udokotela wakho ekutshele ukuthi uyeke.
- Uma unikezwa lokhu ekhaya: Uma uqeqeshwa ukunikeza lokhu ekhaya, funda futhi uqonde imiyalelo ngokucophelela. Uma unemibuzo, buza udokotela wakho noma umhlengikazi ngokuphindaphindiwe.
Ukulahlwa ngokuphephile kwezinaliti kanye nesirinji
Ungalokothi ulahle izinaliti ezisetshenzisiwe kanye nesirinji kudoti. Kufanele zifakwe esitsheni esiklanyelwe ngokukhethekile (isitsha esibukhali) . Uma ungenaso, udokotela wakho angasithola. Lokhu kubaluleke kakhulu ekuphepheni kwengane yakho kanye nawo wonke umuntu emndenini.
Yini okufanele uyenze uma uphuthelwa umthamo wemithi?
- Uma usesibhedlela/ekliniki: Ungaphuthelwa usuku ingane yakho enikezwa ngalo umuthi. Uma ungakwazi ukuya ngosuku oluhleliwe, shayela udokotela wakho ngokushesha umtshele.
- Uma uyinikeza ekhaya: Uma uphuthelwe umthamo, thatha ngokushesha nje lapho ukhumbula. Bese, linda okungenani amahora ayisithupha ngemva kokulahlekelwa umthamo kuze kube yilapho usuqedile umthamo wakho olandelayo.Nikeza. Ungalokothi unikeze umthamo ophindwe kabili. Uma ungabaza, khuluma nodokotela wakho.
Imiphumela emibi nezinto okufanele siziqaphele
Njenganoma yimuphi umuthi, lo ungaba nemiphumela emibi. Kubalulekile ukuqaphela lokhu futhi uthathe isinyathelo ngokushesha uma kudingeka.
| Imiphumela emibi okufanele ibikwe kudokotela wakho ngokushesha | |
|---|---|
| Ukungezwani komzimba okukhulu | Ukuqubuka kwesikhumba, ukulunywa, ukuvuvukala kobuso, izindebe noma ulimi, ubunzima bokuphefumula. |
| Izimpawu zokutheleleka | Umkhuhlane, ukubanda, ukukhwehlela, umphimbo obuhlungu, ubuhlungu lapho uchama. |
| Izinkinga zendawo yokujova | Ubuhlungu obukhulu, ukubomvu, noma ukuvuvukala endaweni yokujova. |
| Imiphumela emibi evame ukuba yinto engakhathazeki ngayo, kodwa okufanele ibikwe kudokotela wakho uma iqhubeka | |
| Izinkinga zesistimu yokugaya ukudla | Uhudo, ubuhlungu besisu, ukuhlanza. |
Okubalulekile: Lolu hlu aluhlanganisi yonke imiphumela emibi engaba khona. Uma ubona noma yini engavamile enganeni yakho, shayela udokotela wakho ngokushesha.
Qaphela ilanga!
Isikhumba somntwana wakho singase sizwele kakhulu elangeni (sizwele ukukhanya kwelanga) ngenkathi uthatha lo muthi. Ngakho-ke, gwema ukuchaya ingane yakho elangeni elinamandla. Uma uphuma ngaphandle, gqoka izingubo zokuzivikela bese usebenzisa isivikelo selanga esifanele, njengoba kunconywe udokotela wakho.
Ingabe kungaba nezinkinga ngeminye imithi?
Ngokusekelwe olwazini lwamanje, i-fosdenopterin ayibikwanga ukuthi ibangela noma yikuphi ukusebenzisana okuthile neminye imithi. Kodwa-ke, kubaluleke kakhulu ukunikeza udokotela wakho uhlu oluphelele lwanoma yimiphi eminye imithi, amavithamini, imithi yamakhambi (njengezithako zokuphuza, i-arishta), noma izithasiselo zokudla ingane yakho ezithathayo.
Uwugcina kanjani umuthi? (Lokhu kubaluleke kakhulu)
Ukusebenza kahle kwalomuthi kuncike ekugcinweni kwawo ngendlela efanele, ngakho landela le miyalelo kahle.
- Ama-vial angavulwanga: Lawa kufanele agcinwe efrijini ezingeni lokushisa eliphakathi kwama-degree Celsius angu-25 no-10. Gcina ebhokisini lokuqala kuze kube yilapho uyisebenzisa, uvikelekile ekukhanyeni. Khipha efrijini imizuzu engama-30 ngaphambi kokusebenzisa.
- Ngemva kokuxuba: Ngemva kokuxuba impuphu yomuthi noketshezi, ingagcinwa ekushiseni kwegumbi (15-25 Celsius) noma esiqandisini (2-8 Celsius). Kodwa-ke, kufanele inikezwe ingane zingakapheli amahora ama-4 ixubile .
- Lahla imithi ephelelwe yisikhathi noma esele. Cela udokotela wakho iseluleko sokuthi ungayilahla kanjani ngokuphephile.
Umlayezo Wokuya Nawe Ekhaya
- I-Fosdenopterin iyindlela yokwelapha isifo esingavamile sofuzo esibizwa ngokuthi i-Molybdenum Cofactor Deficiency Type A. Nakuba ingasiqedi ngokuphelele lesi sifo, isiza kakhulu ekunciphiseni ingozi yokufa.
- Kubalulekile ukunikeza lo muthi wokugoma ngesikhathi esifanayo nsuku zonke, njengoba kuyalelwe udokotela wakho. Uma uphuthelwa umthamo, xhumana nodokotela wakho ngokushesha.
- Qaphela kakhulu nganoma yikuphi ukusabela kokungezwani komzimba, izimpawu zokutheleleka, kanye nobuhlungu/ukuvuvukala endaweni yomjovo. Uma ubona noma yini engavamile, yazisa udokotela ngokushesha.
- Landela imiyalelo yokugcina imithi (ikakhulukazi ukuyiqandisa) ngokucophelela. Lokhu kubalulekile ukuze imithi isebenze.
- Awuwedwa. Khuluma ngokukhululekile nethimba lakho lezokwelapha mayelana nokukhathazeka kwakho nokwesaba kwakho lapho ubhekene nesimo esingavamile kangaka. Bazokunikeza ukwesekwa okudingayo.
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