I kekahi manawa, he paʻakikī loa kekahi o nā maʻi a kā mākou mau keiki e loaʻa ai. A he kūikawā nō hoʻi nā lāʻau lapaʻau i hāʻawi ʻia no lākou. I kēia lā e kamaʻilio mākou e pili ana i kekahi o ia mau lāʻau lapaʻau kūikawā. ʻO Odevixibat ka inoa o kēia lāʻau lapaʻau, i hāʻawi ʻia i kekahi mau keiki e mālama i ka ʻili ʻeha hiki ʻole ke hoʻomanawanui i hoʻokumu ʻia e kahi maʻi akepaʻa kakaikahi. Inā ua kuhikuhi ʻia kēia lāʻau lapaʻau e ke kauka i kāu keiki, a laila he mea nui loa kēia ʻatikala iā ʻoe.
He aha ke ʻano lāʻau lapaʻau ʻo Odevixibat?
I ka ʻōlelo maʻalahi, ʻo Odevixibat kahi lāʻau lapaʻau i hāʻawi ʻia e kāohi i ka ʻū nui i hoʻokumu ʻia e ka pilikia me ke akepaʻa o kāu keiki. Ua ʻike ʻia ʻo ia ma ka inoa mākeke ʻo Bylvay.
I ke ʻano lapaʻau, pili kēia i kahi papa o nā lāʻau i kapa ʻia ʻo ileal bile acid transporter (IBAT) inhibitors . ʻO ke ʻano kēia, ke kāohi nei kēia lāʻau i ka reabsorption o nā waikawa bile i loko o ko kākou ʻōpū i loko o ke kino.
Hoʻohana nui ʻia kēia lāʻau lapaʻau e kāohi i ka maneʻo i nā poʻe maʻi me kahi maʻi i kapa ʻia ʻo Progressive Familial Intrahepatic Cholestasis (PFIC) . He maʻi genetic kakaikahi ka PFIC e hoʻopilikia ana i ke kahe o ka bile mai nā hunaola akepaʻa. Hoʻoulu kēia i ka hōʻiliʻili ʻana o ka bile i loko o ke kino, e hoʻoulu ai i ka maneʻo hiki ʻole ke hoʻomanawanui. Hana ʻo Odevixibat ma ka kaohi ʻana i ke kumu kumu o ka maneʻo.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau, he mea nui e hāʻawi i kāu kauka i kahi wehewehe piha no kou olakino a i ʻole ke olakino o kāu keiki. E hōʻoia e haʻi i kēia mau mea:
- Nā hemahema o ka wikamina: Inā ua haʻi aku ke kauka iā ʻoe he haʻahaʻa kou mau pae o nā wikamina A, D, E, a i ʻole K i loko o kou koko, e haʻi iā lākou.
- Hāpai keiki: Inā hāpai ʻoe, a i ʻole e hoʻolālā ana e loaʻa kahi pēpē i ka wā e hiki mai ana, pono ʻoe e haʻi i kāu kauka.
- Inā he makuahine hānai waiū ʻoe: Inā he makuahine hānai waiū ʻoe, e hoʻomaopopo pono i ke kahu maʻi.
He mea nui loa ke kamaʻilio ʻana me ke kauka me ka hūnā ʻole ʻana i kēia ʻano ʻike no kou palekana a me kāu keiki.
ʻO ke ala kūpono e hoʻohana ai i ka lāʻau lapaʻau
I mea e loaʻa ai ka hopena maikaʻi loa mai kēia lāʻau lapaʻau, he mea nui loa ia e hoʻohana pono. E lawe i ka nui kūpono, i ka manawa kūpono, e like me ke kauoha a kāu kauka.
| ʻŌlelo aʻoaʻo | Pehea e hana ai |
|---|---|
| Ke lawe nei i ka lāʻau lapaʻau | E lawe i ka manawa like i kēlā me kēia lā, me kahi aniani wai maikaʻi. ʻOi aku ka maikaʻi o ka lawe ʻana me ka ʻai. |
| Ke ale ʻana i ka capsule | E ale holoʻokoʻa i ke capsule . Mai uhaʻi, kuʻi, a nau paha no kekahi kumu. |
| Inā paʻakikī ke ale ʻia | Inā pilikia ʻoe i ke ale ʻana i ke capsule, e wehe pono iā ia, e kāwili i ka pauka i loko me ʻelua punetēpē o kahi meaʻai mānoanoa e like me ka yogurt a i ʻole ka applesauce, a ale koke me ka ʻole o ka nau ʻana. Mai kāwili i kēia lāʻau me nā wai (wai, waiū, wai huaʻai). |
| Me nā lāʻau lapaʻau ʻē aʻe | Inā ʻoe e lawe ana i nā lāʻau hoʻohaʻahaʻa cholesterol (bile acid binding resins) e like me Cholestyramine, Colesevelam, a i ʻole Colestipol, e lawe iā lākou i 4 mau hola ma mua a i ʻole 4 mau hola ma hope o ka lawe ʻana iā Odevixibat. |
I ka manawa hea e hāʻawi ai i kēia lāʻau lapaʻau i nā keiki?
Paipai nā kauka i kēia lāʻau lapaʻau no nā pēpē e like me 3 mahina i kekahi mau hihia kūikawā. Eia nō naʻe, aia kekahi mau mea e makaʻala ai. No laila, i ka hāʻawi ʻana i kēia lāʻau lapaʻau i kāu keiki, e hahai pono i nā kuhikuhi a ke kauka.
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe a i ʻole kāu keiki i kēia lāʻau lapaʻau, mai hoʻokaʻulua.
E kelepona koke aku i ke Kikowaena ʻIke Lāʻau Make Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?
Inā poina iā ʻoe ke lawe i kahi lāʻau, e lawe koke i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā kokoke ka manawa no kāu lāʻau aʻe, e kāpae i ka lāʻau i hala ʻole a lawe i ka lāʻau aʻe i ka manawa i hoʻonohonoho ʻia.Mai lawe pālua i kahi mahele lāʻau e hana ai no kahi mahele lāʻau i poina.
Nā mea ʻē aʻe e launa pū me kēia lāʻau lapaʻau
Hiki i kekahi mau lāʻau lapaʻau ke launa pū me Odevixibat, ʻoiai, e like me kā mākou i ʻōlelo ai ma mua, me nā lāʻau lapaʻau i ka papa resins bile acid binding .
- ʻO Cholestyramine
- ʻO Colesevelam
- ʻO Colestipol
ʻAʻole i piha kēia papa inoa. No laila, he mea nui loa e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā lāʻau lapaʻau no nā maʻi ʻē aʻe, nā huaora, a me nā mea kanu kuʻuna).
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
- Nā nānā maʻamau: E hōʻoia e hele i nā nānā i hoʻonohonoho ʻia e kāu kauka nou a i ʻole kāu keiki. E kamaʻilio me kāu kauka e pili ana inā e hoʻomaikaʻi a ʻino paha kāu mau hōʻailona.
- Nā wikamina: He mea nui e hōʻoia i ka loaʻa ʻana o nā wikamina āu e pono ai (ʻoi aku hoʻi nā wikamina momona-soluble A, D, E, a me K) i ka wā e lawe ana i kēia lāʻau. E kamaʻilio me kāu kauka e pili ana i nā meaʻai āu e ʻai ai a me nā mea hoʻohui āu e lawe nei.
- Nā hoʻāʻo koko: I ka wā o ka mālama ʻana, hiki i kāu kauka ke kauoha i kekahi hana koko e nānā i nā mea e like me ka hana o kou ake. Mai hōʻalo iā lākou.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki iā Odevixibat ke hana i kekahi mau hopena ʻaoʻao. Hiki i kekahi o kēia mau mea ke koʻikoʻi, no laila he mea nui e makaʻala iā lākou.
| ʻAno o ka hopena ʻaoʻao | Nā hōʻailona |
|---|---|
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo nui, pehu o ka maka, nā lehelehe a i ʻole ke alelo. |
| Nā hōʻailona o ka hōʻeha o ke akepaʻa | ʻO ka mimi melemele ʻeleʻele a ʻeleʻele paha, ka manaʻo palupalu, ke kuni, ka nalowale o ka makemake i ka ʻai, ka ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, a me ka melemele o nā maka a i ʻole ka ʻili (jaundice). |
| Ka maʻi pākī | Ka maʻi pākī mau. |
| Nā mea e haʻi aku ai i kāu kauka inā hoʻomau a hoʻopilikia paha lākou | |
| ʻeha ka ʻōpū | ʻEha ʻōpū laulā. |
| Ka luaʻi ʻana | Ka luaʻi ʻana. |
Pehea ʻoe e mālama ai i kāu lāʻau lapaʻau?
- E mālama i kahi hiki ʻole i nā keiki a me nā holoholona ke kiʻi aku .
- E mālama ma ka mahana o ka lumi (ma waena o 20 a me 25 kekelē Celsius) , ma kahi maloʻo.
- Mai hoʻohana i nā lāʻau lapaʻau i pau ka lā. E hoʻolei aku iā lākou.
Pehea ʻoe e hoʻopau ai i nā lāʻau lapaʻau i hoʻohana ʻole ʻia?
ʻAʻole ia he manaʻo maikaʻi e hoʻolei i nā lāʻau lapaʻau i pau ka lā a i ʻole nā lāʻau lapaʻau i makemake ʻole ʻia i loko o ka ʻōpala a i ʻole i loko o ka lua. E noi i kāu kauka no ka ʻōlelo aʻo. Inā ʻōlelo lākou he mea maikaʻi ke hoʻolei i ka lāʻau lapaʻau 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 nā lau kī i hoʻohana ʻia, nā lepo kope, a i ʻole ka lepo, a waiho i loko o kahi ʻeke i hoʻopaʻa paʻa ʻia.
Leka Lawe-Home
- ʻO Odevixibat kahi lāʻau lapaʻau i kuhikuhi ʻia no ka maneʻo i hoʻokumu ʻia e kahi maʻi akepaʻa i kapa ʻia ʻo PFIC a pono e hoʻohana wale ʻia ma ke ʻōlelo a ke kauka.
- E ale holoʻokoʻa i ke capsule. Mai kuʻi a nau paha. E hoʻohui wale me kahi meaʻai paʻa inā pilikia ʻoe i ka ale ʻana.
- E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei a me kou mau kūlana olakino.
- Inā ʻike ʻoe i kekahi mau hopena koʻikoʻi, e like me nā hōʻailona maʻi a i ʻole nā hōʻailona o ka hōʻino ʻana o ke akepaʻa (melemele o nā maka, mimi ʻeleʻele), e hoʻomaopopo koke i kāu kauka.
- Inā ʻoe e lawe nui i ka lāʻau, e hele koke i ka National Poison Information Center a i ʻole ETU.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, e kamaʻilio me kāu kauka.
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