Mwana wako mudiki anoneta here mushure mekutamba kwenguva yakati? Kana kuti anogara achiita seanorwara, asingade kudya, kana kuti ane hope? Dzimwe nguva tinofunga kuti izvi zvinhu zvakajairika, asi shure kweizvi zvinogona kunge paine chirwere chisingawanzoitiki, asi chakakomba zvikuru chemajini . Nhasi tiri kutaura nezvechimwe chirwere chakadai, Long-Chain Fatty Acid Oxidation Disorders, kana kuti LC-FAODs .
Zvichitaurwa zviri nyore, ndezvipi izvi zvinonzi LC-FAODs?
Iri izita rakaoma kunzwisisa, asi ngatirichengetedzei riri nyore. Muviri wedu wakaita semota. Unoda simba, kana kuti mafuta, kuti ushande. Chikafu chatinodya ndicho chinopa muviri wedu simba. Maitiro ekushandura chikafu ichi kuita simba anonzi metabolism .
Zvikafu zvatinodya, zvakaita semafuta emuorivhi , hove , maavocado, nenyama, zvine chimwe chinhu chinonzi 'fatty acids'. Izvi zvinopa simba mumuviri. Kune mhando dzakasiyana dzemafatty acids aya. Pakati pawo, rudzi runonzi 'long-chain fatty acids' runoda enzyme chaiyo kuti iashandure kuita simba.
Vana vanozvarwa vaine chirwere chemajini chinonzi LC-FAODs vanoshaya enzyme iyoyo mumiviri yavo. Saka miviri yavo haigone kushandura aya ma "long-chain fatty acids" kuita simba.
Chii chinoitika ipapo?
1. Nhengo dzinokosha dzakadai semwoyo , uropi, chiropa , uye tsandanyama hadzigamuchire simba rinodiwa.
2. Mafuta acids asingagone kushandurwa kuita simba anoungana munhengo idzodzo otanga kudzikuvadza.
Izvi zvinogona kukonzera matambudziko akakomba akadai sechirwere chemwoyo , kutadza kushanda kwechiropa , uye kuderera kwakanyanya kweshuga muropa . Saka, zvakakosha zvikuru kuongorora chirwere ichi nekukurumidza uye kuchengetedza kudya kwakakodzera .
Ndezvipi zviratidzo zvechirwere ichi?
Zviratidzo zvinogona kusiyana kubva pamunhu nemunhu. Zvinoenderana nerudzi rweenzyme isipo uye kuoma kwechirwere. Vamwe vanhu vangasaratidza zviratidzo kusvika pakukura kana kukura. Asi muzviitiko zvakakomba, zviratidzo zvinotanga kuonekwa mukati memwedzi mishoma yekutanga yehupenyu.
Zviratidzo zvekutanga zvechirwere chetsandanyama dzemwoyo muvana vachangoberekwa zvinosanganisira `cardiomyopathy`. Izvi zvinosanganisira kunetseka kufema, kunetseka kudya, uye kurara zvakanyanya. Vacheche nevana vadiki vanogona kuratidza zviratidzo zvekutanga zvematambudziko echiropa, zvakaita seyero yemaziso neganda (jaundice), uye shuga shoma muropa (hypoglycemia).
Ngatitarisei zvirwere zvikuru zvinogona kuitika panyaya iyi uye zviratidzo zvinobatanidzwa nazvo.
| Chinzvimbo | Zviratidzo zvakajairika |
|---|---|
| Hunhu hwakawanda |
|
| Shuga shoma muropa (Hypoglycemia) | |
| Kuwedzera kwehuwandu hweammonia muropa (Hyperammonemia) | |
| Cardiomyopathy |
Chinhu chakakosha ndechekuti kune vamwe vana, zviratidzo izvi zvinongoonekwa chete kana vachirwara, vaine nzara, kana kuti vachinetseka.
Chii chinokonzera chirwere ichi?
Ichi chirwere chine majini chete. Kureva kuti, chinotorwa kubva kuvabereki kuenda kuvana. Zvichitaurwa zviri nyore, chikonzero ndechekushanduka kwejini kunorayira kugadzirwa kweenzyme inoputsa mafuta acids atakataura nezvayo.
Kuti mwana ave nechirwere ichi, anofanira kugara nhaka yejini rakakanganisika kubva kuvabereki vese . Kana vakagara nhaka kubva kumubereki mumwe chete, mwana wacho anenge ari "mutakuri". Havazovi nezviratidzo, asi vanogona kupa jini iri kuvana vavo.
Ichi chirwere hachitapurirani. Hachigoni kutapuriranwa kubva kumunhu mumwe kuenda kune mumwe nenzira ipi zvayo.
Nzira yekuziva sei chirwere ichi?
Munyika dzakawanda, mwana wese achangoberekwa anoongororwa zvirwere izvi zvemajini. Izvi zvinoitwa neropa diki rinotorwa kubva pachitsitsinho mukati memazuva 1-2 ekuzvarwa. Kana bvunzo iyi ikataura nezvechirwere ichi, mimwe miedzo inozoitwa kusimbisa chirwere chacho.
Miedzo mikuru yakaitwa pakuita izvi ndeiyi:
- Kuongororwa kweropa neweti: Izvi zvinoongorora huwandu hwakawanda hwemafuta acid nezvimwe zvinhu muropa neweti.
- Kuongororwa kwemajini: Iyi ndiyo nzira chete yekuziva kana uine LC-FAODS uye, kana zvakadaro, rudzii.
Kana mwana wako aine zviratidzo zvatakambotaura nezvazvo, zvakakosha kuti uone chiremba wevana nekukasika kuti mukurukure nezvazvo.
Inorapwa sei?
Kunyange hazvo chirwere ichi chisingarapike zvachose, kana chikarapwa nemazvo , matambudziko akakomba anogona kudzivirirwa uye hupenyu hwakanaka hunogona kuraramwa. Marapirwo makuru anosanganisira kuchinja zvekudya, zvekudya zvinovaka muviri, uye kuchinja mararamiro.
1. Kudya
Ichi ndicho chinhu chakakosha. Kudya uku kunofanira kugadzirwa pasi pemazano enyanzvi yezvekudya.
- Deredza kudya zvine mafuta akawanda ane ma "long-chain fatty acids": Zvokudya zvakaita senyama, mamwe mafuta emuriwo, nzungu, nehove zvinofanira kuderedzwa.
- Idya zvekudya zvakawanda zvine makabhohaidhiretsi: Kuti uwane simba, unofanira kusanganisira zvekudya zvine makabhohaidhiretsi akaita semupunga, mbatatisi, nembatatisi mukudya kwako.
- Idya zvidiki, kakawanda: Zvakakosha kudya panguva dzakajairika mukati mezuva kuti huwandu hweshuga muropa hurambe hwakagadzikana.
- Dzivisa kutsanya: Hazvina kunaka kunzwa nzara kwemaawa anopfuura masere.
Kana shuga yeropa remwana wako ikangoerekana yadzikira zvakanyanya, angangoda kuenda kuchipatara opihwa mushonga weshuga (IV) mumushonga wesaline unopihwa netsinga muEmergency Treatment Unit (ETU).
2. Zvekudya zvinovaka muviri
Nekuti varwere ava havagone kushandisa mafuta ane ma "long-chain fatty acids", vanopihwa rumwe rudzi rwemafuta anogona kushandurwa nemuviri kuita simba nyore nyore. Aya anonzi medium-chain triglycerides (MCTs) . Aya anowanikwa semafuta eMCT. Aya maMCT anowedzerwawo kune mamwe mafomura evana vacheche. Chiremba wako achakupa rumwe ruzivo nezveizvi.
3. Mushonga
Mushonga unonzi Triheptanoin (Dojolvi) unotenderwa kushandiswa pakurapa LC-FAODs. Unowanikwa chete kana wanyorerwa nachiremba wako .
4. Kuchinja kwemararamiro
Zvakakosha kudzivirira zvinhu zvinokonzera zviratidzo zvinowedzera.
- Dzivisa maekisesaizi akawandisa: Deredza mabasa anorema muviri zvakanyanya.
- Dzora kushushikana: Zvinhu zvakaita seyoga nekufungisisa zvinogona kubatsira.
- Zvidzivirire kubva kuzvirwere: Wana majekiseni ese anokurudzirwa nachiremba wako nenguva. Tsvaga kurapwa nekukurumidza kunyangwe kana uine dzihwa diki kana fivha.
Kurarama nechirwere ichi idambudziko here?
Ehe, hongu. Ichi chirwere chehupenyu hwese chinoda kugadziriswa. Unofanira kungwarira nezvekudya kwako. Unofanira kuziva zvekuita kana paine emergency. Izvi zvinogona kushungurudza pfungwa dzemwana nevabereki.
Naizvozvo,
- Dzidza nezvechirwere ichi zvakanaka: ruzivo ndiro simba guru.
- Tsvaga rutsigiro rwepfungwa: Usazeza kutsvaga rubatsiro kubva kumhuri, shamwari, kana kune mupi wezano wehutano hwepfungwa.
- Gara uchitaurirana nachiremba wako: Mubvunze kana uine mibvunzo kana zvinokunetsa.
Kunyangwe chirwere ichi chisingawanzoitiki, kana chikatarisirwa zvakanaka, mwana anogona kurarama hupenyu hwakanaka. Chinhu chakakosha ndechekuongorora chirwere ichi nekukurumidza uye kutevedzera mirairo yachiremba.
Mharidzo Yekuenda Nayo Kumba
- LC-FAOD chirwere chakakomba chemajini chinoitika kuvana nevakuru, uye chinokonzerwa nekusakwanisa kwemuviri kushandura mamwe marudzi emafuta kuita simba.
- Zviratidzo zvakaita sekuneta zvakanyanya, kushaya simba kwetsandanyama, matambudziko emwoyo nechiropa, uye kuderera kweshuga muropa zvinogona kuitika.
- Ichi hachisi chirwere chinotapuriranwa. Chinhu chinogara nhaka kubva kuvabereki kuenda kuvana.
- Zvinhu zvikuru zvinoumba kurapwa kudya kwakakosha, zvekudya zvinovaka muviri zvakaita seMCT oil, uye kudzivirira zvinhu zvinowedzera zviratidzo.
- Kana mwana wako aine chimwe chezviratidzo izvi, enda kuna chiremba wako nekukasika kuti akupe mazano. Kuongororwa kwechirwere nekukurumidza kwakakosha zvikuru.
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