Hiki i kekahi mau keiki, ʻoiai ka poʻe me kahi maʻi kakaikahi i kapa ʻia ʻo Alagille syndrome, ke ʻike i ka ʻūlū ʻole o ka ʻili. ʻAʻohe huaʻōlelo e wehewehe i ka ʻoluʻolu ʻole a lākou e ʻike ai. No laila, ʻo kekahi lāʻau lapaʻau kūikawā a nā kauka e kuhikuhi ai i ia mau hihia ʻo Maralixibat, i kūʻai pinepine ʻia ma lalo o ka inoa inoa ʻo Livmarli. Inā ua kuhikuhi ʻia kēia lāʻau iā ʻoe a i ʻole kāu keiki, nui paha kou hopohopo a me nā nīnau e pili ana i ia mea. E kamaʻilio kākou e pili ana i kēia mau mea a pau me ka maʻalahi a me ke aloha i kēia lā.
I ka ʻōlelo maʻalahi, he aha ka mea e hana ʻia me kēia lāʻau Maralixibat?
ʻAe, ʻo ka inoa lapaʻau no kēia mea paha e kani iki ana he paʻakikī. ʻO Maralixibat kahi lāʻau lapaʻau no kahi papa o nā lāʻau i kapa ʻia ʻo ileal bile acid transporter (IBAT) inhibitors. I kēia manawa, mai huikau, e wehewehe maʻalahi wau.
E noʻonoʻo, aia ka bile i hana ʻia e ke akepaʻa i loko o ko kākou kino i kahi mea i kapa ʻia ʻo bile acids. I ka maʻi Alagille, ʻaʻole i hoʻokuʻu pono ʻia kēia mau bile acids mai ke kino a hōʻiliʻili i loko o ke koko. Ke piʻi ka pae o nā bile acids i loko o ke koko, loaʻa ka ʻeha nui ma ka ʻili.
No laila, ʻo ka hana a kēia lāʻau lapaʻau Maralixibat, ʻo ia ke kāohi i ka omo ʻana o kēia mau waikawa bile i loko o ke kino mai nā ʻōpū. I mea e pololei ai, ke ālai nei ia i kēlā kaʻina hana. A laila e emi ana ka nui o nā waikawa bile i loko o ke koko, a e kāohi mālie ʻia hoʻi kēlā ʻehaʻeha o ka ʻili. Maopopo iā ʻoe?
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
He mea nui loa i kāu kauka ke ʻike i kou kūlana olakino piha ma mua o ke kau ʻana i kēia lāʻau. No laila, inā loaʻa iā ʻoe kekahi o kēia mau maʻi, e ʻoluʻolu e haʻi i kāu kauka.
- Inā ua ʻike mua ʻia ʻoe me nā pae haʻahaʻa o nā wikamina A, D, E, a i ʻole K i loko o kou koko.
- Inā hāpai ʻoe, a i ʻole ke manaʻolana nei e hāpai i ka wā e hiki mai ana.
- Inā he makuahine ʻoe e hānai waiū ana i kahi keiki.
Ma muli o kēia ʻike, e hoʻoholo ke kauka i ka hoʻolālā lapaʻau kūpono loa nāu.
Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?
He hopena waha kēia. I mea e loaʻa ai ka pono nui o ka lāʻau lapaʻau, he mea nui e hoʻohana pono.
- Manawa: Pono e lawe ʻia kēia i ka manawa like i kēlā me kēia lā, 30 mau minuke ma mua o ka ʻai mua o ka lā.
- Ana: E hoʻohana wale i ka syringe waha kūikawā, puna, a i ʻole ka kulu wai e hele mai me kēia lāʻau lapaʻau e ana. Mai hoʻohana i nā puna tī maʻamau a i ʻole nā puna sopa ma ka home no kekahi kumu, no ka mea, ʻaʻole lākou e ana i ka nui kikoʻī.
- Me nā lāʻau lapaʻau ʻē aʻe: Inā ʻoe e lawe ana i nā lāʻau lapaʻau ʻē aʻe (bile acid binding resins) e like me cholestyramine a i ʻole colesevelam, pono e liʻiliʻi he 4 mau hola ma waena o ka lawe ʻana iā lākou a me kēia lāʻau lapaʻau Maralixibat.Pono ʻoe e mālama. ʻO ia hoʻi, pono ʻoe e lawe i ka lāʻau lapaʻau ʻē aʻe ma hope o 4 mau hola ma hope o ka lawe ʻana iā Maralixibat a i ʻole 4 mau hola ma mua. E kamaʻilio me kāu kauka e pili ana i kēia a e wehewehe hou aku.
- Nā Kuhikuhi no ka Hoʻohana ʻana: E heluhelu pono i nā KUHIKUHI NO KA HOʻOHANA ʻana e hele mai me ka lāʻau lapaʻau. Inā he mea āu e maopopo ʻole ai, e nīnau i kāu kauka.
Hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki e like me hoʻokahi makahiki no kekahi mau kūlana i koho ʻia. Eia nō naʻe, pono e mālama ʻia nā hana palekana kūikawā. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kahi keiki, e hahai pono i nā kuhikuhi a ke kauka.
He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?
Me ka paʻahana o ke ola, hiki ke poina i ka lawe ʻana i kahi lāʻau lapaʻau. Inā hana ʻia kēlā, e lawe koke i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā ʻoi aku ma mua o 12 mau hola mai ka manawa āu e lawe mau ai, e kāpae i ka lāʻau i hala ʻole. E lawe i ka lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i ʻelua mau lāʻau i ka manawa hoʻokahi e hoʻopiha ai i kahi lāʻau i hala ʻole.
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, mai hopohopo a e hele koke i ka Emergency Treatment Unit (ETU) kokoke loa i ka haukapila. A i ʻole e kelepona i ke National Poisons Information Centre ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
Nā hopena ʻaoʻao hiki ke loaʻa i ka wā e lawe ai i ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, aia kekahi mau hopena ʻaoʻao i ka wā e lawe ai iā Maralixibat. Hiki i kekahi o kēia mau mea ke koʻikoʻi, no laila he mea nui e makaʻala iā lākou.
| Ka hopena ʻaoʻao | Nā hōʻailona |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono ʻoe e hōʻike koke i kāu kauka | |
| Nā hopena alerika koʻikoʻi | ʻUlaʻula ka ʻili, ka hives, ka maneʻo; ka pehu ʻana o ka maka, nā lehelehe a i ʻole ke alelo. |
| ʻEha o ke akepaʻa | Melemele o nā maka a i ʻole ka ʻili; mimi melemele ʻeleʻele a ʻeleʻele paha; ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū; nalowale o ka makemake e ʻai; luhi ʻē. |
| Ke kahe ʻana o ke koko o ka ʻōpū | ʻŌpū koko a ʻūlū paha; ka luaʻi ʻana i ke koko ʻeleʻele a i ʻole e like me ke koko lepo kofe. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Ka maʻi pākī | ʻŌpū. |
| ʻEha ʻōpū | ʻEha a ʻoluʻolu ʻole paha o ka ʻōpū. |
| Ka luaʻi a me ka luaʻi | Ka luaʻi ʻana a i ʻole ka manaʻo e luaʻi ana. |
Nā mea ʻē aʻe e launa pū me ka lāʻau lapaʻau
Hiki i kekahi mau lāʻau lapaʻau ʻē aʻe āu e lawe nei ke hoʻopilikia i ke ʻano o ka hana a Maralixibat. No laila, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui). E makaʻala loa i nā lāʻau lapaʻau aʻe:
- Nā resins e hoʻopaʻa ai i ka waikawa Bile: No ka laʻana, cholestyramine, colesevelam, colestipol.
- ʻO kekahi mau lāʻau lapaʻau i hoʻohana ʻia e hoʻohaʻahaʻa i ka cholesterol: no ka laʻana, atorvastatin, lovastatin, simvastatin.
Pehea e mālama ai a lawe aku i ka lāʻau lapaʻau?
- Ka Mālama ʻana: E mālama i ka ʻōmole lāʻau lapaʻau ma kahi palekana mai ka hiki ʻana aku o nā keiki a me nā holoholona. E mālama ma ka mahana o ka lumi (ma waena o 20-25 kekelē Celsius). ʻO ka mea nui loa, e hoʻolei i nā lāʻau lapaʻau i koe he 45 mau lā ma hope o ka wehe ʻana i ka ʻōmole.
- Ke Hoʻolei ʻana: No ke hoʻolei ʻana i nā lāʻau lapaʻau i pau ka manawa a i ʻole makemake ʻole ʻia, e nīnau i kāu hale kūʻai lāʻau lapaʻau a haukapila paha e pili ana i kahi papahana e ʻae iā lākou. Inā ʻaʻole, e nānā i ka lepili e ʻike inā ua maikaʻi ke hoʻolei ʻana i ka lāʻau lapaʻau i loko o ka ʻōpala.Mai hoʻolei i ka lāʻau lapaʻau i loko o ka lua me ka ʻole o ke kūkākūkā mua ʻana me kāu kauka. Inā ʻoe e hoʻolei ana i loko o ka ʻōpala, e lawe i ka lāʻau lapaʻau mai loko mai o ka ʻōmole, e kāwili me kahi mea e like me ke kope kope i hoʻohana ʻia, kahi lepo liʻiliʻi, a i ʻole ka ʻōpala pōpoki, a waiho i loko o kahi ʻeke i hoʻopaʻa pono ʻia a hoʻolei i loko o ka ʻōpala.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Maralixibat (Livmarli) e mālama ai i ka maneʻo ʻili nui i hoʻokumu ʻia e ka maʻi Alagille.
- E lawe i kēia lāʻau i ka manawa like i kēlā me kēia lā, 30 mau minuke ma mua o ka ʻai mua o ka lā. E hoʻohana i ka syringe kūikawā i hele mai me ka lāʻau e ana iā ia.
- E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei (ʻoi aku ka cholestyramine a me nā lāʻau hoʻohaʻahaʻa cholesterol).
- E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe nā maʻi ʻaleka koʻikoʻi, nā hōʻailona o ka hōʻino ʻia o ke akepaʻa (melemele o nā maka/ʻili, mimi ʻeleʻele), a i ʻole nā hōʻailona o ke kahe ʻana o ke koko o ka ʻōpū (nā ʻōpala ʻeleʻele).
- He mea nui e ʻike i kāu kauka i nā lā i hoʻonohonoho ʻia e nānā i kāu mau pae wikamina a me ka hana o ke akepaʻa i ka wā e lawe ana i ka lāʻau.
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