Loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai kahi maʻi kakaikahi akā koʻikoʻi i kapa ʻia ʻo homocystinuria? A laila ua lohe paha ʻoe i kēia lāʻau i kapa ʻia ʻo betaine. He meaʻai maoli ia i loaʻa maoli i loko o ko mākou kino. Ma kēia ʻatikala, e kamaʻilio mākou e pili ana i ke ʻano e hiki ai i ka betaine ke kōkua iā ʻoe e kāohi i kāu mau pae homocysteine, a me nā mea āu e pono ai e makaʻala i ka wā e hoʻohana ai i kēia lāʻau.
He aha ka Betaine? No ke aha ia?
I ka ʻōlelo maʻalahi, he meaʻai ka Betaine e pono ai ko mākou kino . Hoʻohana kūikawā ʻia ia e mālama i kahi maʻi i kapa ʻia ʻo Homocystinuria . Ma kēia ʻano, hoʻonui nui ʻia kahi waikawa amino i kapa ʻia ʻo Homocysteine i loko o ko mākou kino. Hoʻokumu ʻia kēia e nā kumu genetic. No laila, hōʻemi a kāohi kēia lāʻau Betaine i nā pae o ka homocysteine i kiʻekiʻe loa .
Hiki paha i kēia ke hāʻawi i kahi hōʻoluʻolu, a hiki nō hoʻi ke kōkua i ka hōʻemi ʻana i ka pōʻino i hiki ke hana ʻia i ke kino ma muli o ka hoʻonui ʻia o ka homocysteine. Eia nō naʻe, aia kekahi mea nui e hoʻomanaʻo ai ma ʻaneʻi. ʻO ia hoʻi, ʻaʻole ʻo Betaine ka lāʻau lapaʻau no nā mea āpau . Eia nō naʻe, hiki iā ia ke kōkua i ka kaohi ʻana i nā hōʻailona a hoʻomaʻalahi iki i ke ola. I kekahi manawa e loaʻa paha iā ʻoe kēia lāʻau lapaʻau ma lalo o ka inoa inoa `(Cystadane)`.
Hiki i nā kauka ke kuhikuhi i kēia lāʻau lapaʻau no nā kūlana olakino ʻē aʻe. No laila, inā he mau nīnau a kānalua paha kāu e pili ana i kēia, ʻoi aku ka maikaʻi o ka nīnau ʻana i kāu kauka a i ʻole ka mea kūʻai lāʻau ma ka hale kūʻai lāʻau kahi āu e kūʻai ai i ka lāʻau.
He aha kaʻu e haʻi aku ai i ke kauka ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau?
Ma mua o kou hoʻomaka ʻana e hoʻohana iā Betaine, aia kekahi mau mea āu e haʻi aku ai i kāu kauka a i ʻole ka hui mālama ola. Mai hoʻowahāwahā i kēia mau mea, ʻeā? No ka mea, he mea nui loa kēia ʻike no kou palekana.
- Ua loaʻa anei iā ʻoe kahi hopena maʻi i ka Betaine, nā lāʻau lapaʻau like ʻē aʻe, nā meaʻai āu e ʻai ai, nā kala meaʻai, a i ʻole nā mea mālama? Inā ua loaʻa iā ʻoe kēlā ʻike ma mua, e hōʻoia e haʻi aku.
- Ke hāpai nei ʻoe i kēia manawa? A i ʻole ke manaʻolana nei ʻoe e lilo koke i makuahine, ʻo ia hoʻi ke hoʻāʻo nei ʻoe e hāpai?
- He makuahine anei ʻoe a ke hānai waiū nei?
Ma ka hoʻomaopopo ʻana i kāu kauka e pili ana i kēia mau mea ma mua, hiki iā ia ke aʻo pololei iā ʻoe inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha, a i ʻole nā mea palekana āu e pono ai e lawe.
Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?
Pono e lawe ʻia kēia lāʻau lapaʻau ma ka waha. Pono ʻoe e hahai pono i nā kuhikuhi e like me ka mea i kākau ʻia ma ka lepili kauoha i hāʻawi ʻia iā ʻoe e kāu kauka. He mea nui loa kēia. Loaʻa pinepine ia i ke ʻano pauka.
1. ʻO ka mea mua, ma mua o ka wehe ʻana i ke poʻi o ka ʻōmole lāʻau lapaʻau, e lūlū mālie a mālie . Mai lūlū ikaika loa.
2. A laila, pono ʻoe e ana i ka nui o ka lāʻau lapaʻau āu e pono ai me ka puna ana (scoop) i hāʻawi kūikawā ʻia iā ʻoe me ka ʻōmole. E haʻi aku ke kauka iā ʻoe i ka nui o nā puna e lawe ai. E ana pololei i kēlā nui. Mai hoʻohana i nā puna i loko o ka lumi kuke, ʻae?
3. A laila, e hoʻoheheʻe i ka nui o ka lāʻau lapaʻau i ana ʻia i loko o 120 a 180 ml o ka wai, ka wai huaʻai, ka waiū, a i ʻole ka waiū waiū (ma kahi o ka hapalua a ʻekolu hapahā o ke kīʻaha wai) . A i ʻole, hiki iā ʻoe ke hoʻohuihui me a i ʻole ma luna o kahi pāʻina āu e ʻai nei. E hoʻowali maikaʻi a hiki i ka wā e hoʻoheheʻe loa ʻia ai ka lāʻau lapaʻau.
4. E inu koke i ka lāʻau lapaʻau ma hope o ka hoʻoheheʻe ʻia ʻana. Mai mālama a inu ma hope.
Ma ka hahai pono ʻana i kēia e hiki ai iā ʻoe ke loaʻa ka mea nui loa mai ka lāʻau lapaʻau.
Pono anei iaʻu e makaʻala i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki liʻiliʻi?
ʻAe, ʻoiaʻiʻo nō. Pono e akahele nui i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki liʻiliʻi. Hoʻohana ʻia kēia lāʻau lapaʻau i kapa ʻia ʻo Betaine e mālama i ka homocystinuria i nā keiki liʻiliʻi, i kekahi manawa ʻoiai nā pēpē liʻiliʻi loa. Eia nō naʻe, i ka hoʻohālikelike ʻia me nā pākeke, pono paha e hoʻololi pinepine ʻia ka nui o ka lāʻau lapaʻau e loaʻa ai nā hopena kūpono no nā keiki liʻiliʻi a i ʻole nā pēpē. ʻO ke ʻano kēia, pono paha i ke kauka ke nānā i ke kūlana o ke keiki, hana i nā hoʻāʻo koko, a hoʻonui a hoʻemi paha i ka nui e like me ia. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kāu keiki, e kamaʻilio mau me kāu pediatrician a e hahai pololei i kāna mau kuhikuhi .
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, a inā ua lawe hewa kekahi keiki i ka nui, mai hoʻonele i ka manawa a hele i ka lumi pilikia o ka haukapila kokoke loa a kāhea aku paha i kahi kikowaena hoʻomalu lāʻau make . Ma Sri Lanka, ʻo ka mea maʻamau e hana ai, ʻo ia ke hoʻomaopopo i ka ʻoihana pilikia o kahi haukapila aupuni. Hiki i ka hana wikiwiki ke pale aku i ka pōʻino nui.
E hoʻomanaʻo i kēia mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau e kāu kauka. Mai kaʻana like me kekahi, me kou ʻohana a i ʻole nā hoaaloha. ʻOiai inā loaʻa iā ʻoe ke ʻano like, ʻokoʻa paha ka nui kūpono no kēlā me kēia kanaka.
He aha kāu e hana ai inā e hala ʻoe i kāu manawa hoʻopaʻa lāʻau lapaʻau?
He mea maʻalahi ke poina i ka lawe ʻana i kāu lāʻau lapaʻau i kekahi manawa, ʻeā? Inā poina iā ʻoe ka lawe ʻana i kahi mahele lāʻau,E lawe koke i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā kokoke ka manawa no kāu mahele lāʻau aʻe (no ka laʻana, inā e pono kāu mahele lāʻau aʻe i loko o ʻelua a ʻekolu paha hola), e kāpae i ka mahele lāʻau i hala ʻole a lawe i kāu mahele lāʻau aʻe i ka manawa i hoʻonohonoho ʻia . Mai lawe pālua i ka mahele lāʻau. ʻO ka hana ʻana pēlā e hiki ai ke hana i ka overdose a me nā pilikia ʻē aʻe. Inā ʻaʻole ʻoe maopopo, e nīnau i kāu kauka a kauka lāʻau paha.
Ke launa pū nei nā lāʻau ʻē aʻe me kēia lāʻau?
E like me kā mākou ʻike, ʻaʻohe hōʻike o nā pilina koʻikoʻi me ka betaine. ʻŌlelo pinepine nā kauka e lawe i nā huaora e like me ka folate, pyridoxine (vitamin B6), a me cyanocobalamin (vitamin B12) me ka betaine no ka mea kōkua pū kēia mau huaora i ka kaohi ʻana i nā pae homocysteine.
Eia nō naʻe, he mea nui loa ia e haʻi aku i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (nā lāʻau lapaʻau i kauoha ʻia, nā lāʻau hoʻopau ʻeha ma luna o ke kauka, a me nā mea ʻē aʻe), nā mea kanu, a me nā mea hoʻohui meaʻai āu e lawe nei. Eia kekahi, e ʻoiaʻiʻo me kāu kauka e pili ana i nā lāʻau lapaʻau āu e puhi ai, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai. Hiki i kekahi mau mea ke launa pū me kāu mau lāʻau lapaʻau, e hoʻopilikia ana i ka maikaʻi o kā lākou hana a i ʻole e hoʻonui ana i nā hopena ʻaoʻao.
He aha nā mea e makaʻala ai i ka wā e lawe ai i kēia lāʻau?
ʻOiai ʻoe e lawe ana i kēia lāʻau lapaʻau, pono ʻoe e ʻike pinepine i kāu kauka e nānā i kou ʻano . ʻAʻole e kōkua ka lawe wale ʻana i ka lāʻau lapaʻau. Pono nō hoʻi ʻoe e loaʻa i nā hoʻāʻo koko maʻamau e nānā i kāu mau pae homocysteine. E kōkua kēia i kāu kauka e hoʻoholo inā e hana pono ana ka lāʻau lapaʻau iā ʻoe, inā kūpono ka mahele lāʻau o kēia manawa, a inā pono e hoʻololi ʻia. No laila, mai poina i kekahi o nā manawa a kāu kauka.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i ka Betaine ke hana i nā hopena ʻaoʻao i kekahi poʻe. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau, a hiki i kekahi poʻe ke hoʻohana i kēia lāʻau lapaʻau me ka ʻole o nā hopena ʻaoʻao.
Nā hopena ʻaoʻao e pono ʻoe e haʻi koke aku i kāu kauka :
Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, hiki ke lilo i hōʻailona o kahi hopena alerika koʻikoʻi . No laila , e hoʻomaopopo koke i kāu kauka a i ʻole ka haukapila kokoke loa.
- ʻŌhū ʻili
- ʻO ka ʻili nui
- Nā puʻupuʻu e like me ka hives e ʻike ʻia ma ka ʻili
- Ka pehu ʻana o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu (hiki ke pilikia ka hanu ʻana)
Inā hoʻomau a hoʻopilikia paha, e ʻike i ke kauka.Nā hopena ʻaoʻao e haʻi aku:
ʻAʻole koʻikoʻi kēia mau hopena ʻaoʻao, akā inā hoʻopilikia lākou iā ʻoe, a inā hoʻomau lākou me ka hoʻomaikaʻi ʻole ma hope o kekahi mau lā, e haʻi i kāu kauka.
- He ʻala kino ʻē, ʻano iʻa iki (he hopena maʻamau kēia o ka betaine)
- Ka maʻi pākī
- Ka luaʻi ( manaʻo e like me ka luaʻi ʻana)
- ʻŌpū ʻeha , manaʻo e like me ka ʻeha o ka ʻōpū
ʻAʻole i hoʻokomo ʻia kēia papa inoa i nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē a ʻokoʻa paha i loko o kou kino, e ʻoluʻolu e nīnau i kāu kauka. He mea nui loa ia e haʻi i kāu kauka e pili ana i nā hopena ʻaoʻao, no ka mea hiki iā lākou ke hoʻololi i kāu lāʻau lapaʻau inā pono.
Pehea ʻoe e mālama ai i kāu lāʻau lapaʻau?
He mea nui loa hoʻi e mālama pono i ka lāʻau lapaʻau, inā ʻaʻole e emi iho ka pono o ka lāʻau.
- E mālama mau i kēia lāʻau lapaʻau mai ka hiki ʻana aku o nā keiki, ma luna, a ma kahi e hiki ʻole ai iā lākou ke kiʻi aku .
- Pono e mālama ʻia ma ka mahana o ka lumi , ma waena o 15 a me 30 kekelē Celsius (59 a me 86 kekelē Fahrenheit). Mai mālama ma kahi wela loa a i ʻole i loko o ka friji, ke ʻole ke ʻōlelo ʻē aʻe kāu kauka.
- E pani paʻa i ke poʻi o ka ʻōmole lāʻau .
- Pono e pale ʻia mai ka makū . ʻO ia hoʻi, mai waiho i loko o nā wahi me ka makū kiʻekiʻe, e like me ka lumi ʻauʻau.
- E nānā i ka lā palena pau ma ka ʻōmole lāʻau. Mai hoʻohana i kekahi lāʻau ma hope o kēlā lā a e hoʻolei aku me ka palekana.
ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai
No laila, he lāʻau lapaʻau koʻikoʻi ʻo Betaine e hiki ke kōkua iā ʻoe e mālama i kahi maʻi i kapa ʻia ʻo Homocystinuria. Kōkua ia i ka hoʻomalu ʻana i kāu mau pae homocysteine a hoʻemi i nā pilikia i hoʻokumu ʻia e ka maʻi.
ʻO nā mea nui e pono ai ʻoe e hana ma kāu ʻaoʻao, ʻo ia ke hahai pololei i nā ʻōlelo a kāu kauka, e lawe i ka nui kūpono i ka manawa kūpono, e makaʻala i nā hopena ʻaoʻao, a e mālama pono i ka lāʻau lapaʻau .
Inā he mau nīnau hou aku kāu, hopohopo, a kānalua paha e pili ana i kēia lāʻau lapaʻau, mai kānalua e nīnau i kāu kauka a kauka lāʻau paha. E hoʻomanaʻo, hāʻawi wale kēia ʻatikala i ka ʻike laulā e pili ana i kēia lāʻau lapaʻau, he hōʻuluʻulu manaʻo wale nō ia. He mea nui e ʻimi i ka ʻōlelo aʻoaʻo lapaʻau no nā kikoʻī piha a me nā ʻōlelo aʻoaʻo e pili ana i kou kūlana pilikino. Ke makemake nei iā ʻoe e ho'ōla koke!
ʻO Betaine, Homocystinuria, Cystadane, Lāʻau lapaʻau, Homocysteine, Nā hopena ʻaoʻao, Ola kino o nā keiki
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