Inā loaʻa i kāu keiki liʻiliʻi kahi maʻi akepaʻa i kapa ʻia ʻo PFIC (Progressive Familial Intrahepatic Cholestasis), ua ʻike paha ʻoe e ʻānai mau ana ʻo ia i kona kino. I kekahi manawa, ʻaʻole hiki iā ia ke hiamoe, a ʻānai ʻo ia i kona kino a hiki i ka wā e ʻili ai kona ʻili. He ʻike ʻeha a hoʻoluhi loa kēia no ke keiki a no ʻoe hoʻi ma ke ʻano he makua. No laila, ʻo kahi lāʻau lapaʻau kūikawā a nā kauka e ʻōlelo nei e kāohi i kēia ʻili ʻole hiki ʻole ke hoʻomanawanui ʻia ʻo Odevixibat (inoa inoa ʻo Bylvay). I kēia lā, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau, pehea e hāʻawi ai i kāu keiki, a me nā mea e makaʻala ai.
He aha ke ʻano lāʻau lapaʻau ʻo Odevixibat?
I ka ʻōlelo maʻalahi, ʻo Odevixibat kahi lāʻau lapaʻau no kahi papa o nā lāʻau i kapa ʻia ʻo Ileal Bile Acid Transporter (IBAT) Inhibitors . E noʻonoʻo i kēia ʻano: nā waikawa bile, kahi wai i hana ʻia e ko mākou akepaʻa e kōkua i ka hoʻoheheʻe ʻana i ka meaʻai, ua hoʻopili hou ʻia i loko o ko mākou ʻōpū. I nā kūlana e like me PFIC, hōʻiliʻili kēia bile i loko o ke kino, e hoʻoulu ai i ka maneʻo hiki ʻole ke hoʻomanawanui.
No laila, ʻo ka hana a kēia lāʻau lapaʻau ʻOdevixibat, ʻo ia ke kāohi ʻana i ka bile mai ka hoʻopili hou ʻia ʻana i loko o ke kino mai nā ʻōpū. A laila, hoʻokuʻu ʻia ka bile keu i loko o ke kino me ka ʻōpala. Ma muli o kēia kaʻina hana, ua hoʻemi nui ʻia ka ʻili ʻeha hiki ʻole ke hoʻomanawanui (pruritus) e hele mai me ka maʻi PFIC, e hāʻawi ana i ke keiki i ka hōʻoluʻolu nui.
ʻO nā mea nui loa e haʻi aku i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hāʻawi ʻana iā Odevixibat i kāu keiki, he mea nui e haʻi i kāu kauka i kēia ʻike. He mea nui loa kēia no ka palekana o kāu keiki.
| ʻIke e pono ai ʻoe e hāʻawi | No ke aha he mea nui? |
|---|---|
| Inā ua hōʻike ʻia nā pae haʻahaʻa o nā wikamina A, D, E, a i ʻole K. | Hiki i kēia lāʻau lapaʻau ke hōʻemi i ka omo ʻana o nā huaora momona-hoʻoheheʻe ʻia i kekahi ʻano. No laila, inā ua nele ʻoe i ka huaora, pono e makaʻala kāu kauka i kēia. |
| Inā he maʻi ʻoe iā Odevixibat a i ʻole kekahi lāʻau lapaʻau a meaʻai paha. | He mea nui kēia no ka loiloi ʻana i ka pilikia o kahi hopena alerika i ka lāʻau lapaʻau a me ka mālama pono ʻana iā ia. |
| Inā ʻoe e hāpai ana, e hoʻāʻo ana e hāpai, a e hānai waiū ana paha. | I kēia mau hihia, he mea nui e kūkākūkā i ka palekana o ka lāʻau lapaʻau me ke kauka a hoʻoholo i nā hoʻoholo ma muli o kāna ʻōlelo aʻo. |
Pehea e hāʻawi ai i kēia lāʻau lapaʻau i kahi keiki?
He ʻāpana koʻikoʻi loa kēia. E hoʻomaopopo pono pehea e hāʻawi ai i ka lāʻau.
- Loaʻa kēia lāʻau lapaʻau ma ke ʻano he capsule, akā ʻaʻole ia i manaʻo ʻia e ale holoʻokoʻa .
- E hoʻomanaʻo e lawe i kāu lāʻau lapaʻau i ka manawa like i kēlā me kēia lā , e like me ke kauoha a kāu kauka. ʻO ka maʻamau, ua ʻōlelo ʻia e lawe i ke kakahiaka me ka meaʻai.
- KaʻAnuʻu Hana 1: E wehe pono i ke capsule. E kau i nā pellets i loko o hoʻokahi a ʻelua paha punetēpē o ka meaʻai palupalu. No ka laʻana, hiki iā ʻoe ke hoʻohana i ka yogurt, ka maiʻa kuʻi ʻia, a i ʻole ka ʻāpala.
- KaʻAnuʻu Hana 2: Ke hui pū ʻia ka lāʻau lapaʻau a me ka meaʻai, e ʻae i ke keiki e ale. Mai ʻae i ke keiki e nau i nā papa a i ʻole ka meaʻai i hui pū ʻia me lākou.
- KaʻAnuʻu Hana 3: Mai hoʻohuihui i kēia lāʻau lapaʻau me nā wai, e like me ka wai, ka waiū, a i ʻole nā mea inu, no kekahi kumu.
- He mea nui: Inā e lawe ana kāu keiki i nā lāʻau lapaʻau ʻē aʻe (nā resins hoʻopaʻa bile acid) e like me Cholestyramine a i ʻole Colesevelam, pono e hāʻawi ʻia ʻo Odevixibat i 4 mau hola ma mua a i ʻole 4 mau hola ma hope o lākou. E nīnau i kāu kauka no nā kuhikuhi kikoʻī.
- Mai ho'ōki i ka lawe ʻana i ka lāʻau a hiki i ka wā e ʻōlelo aku ai kāu kauka iā ʻoe. Ua kuhikuhi ʻia kēia lāʻau nou wale nō, mai kaʻana like me nā poʻe ʻē aʻe.
Inā ʻoe e poina i kahi lāʻau lapaʻau, mai hopohopo. E lawe i ka lāʻau lapaʻau i poina i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā kokoke ka manawa no kāu lāʻau lapaʻau aʻe, e kāpae i ka lāʻau lapaʻau i poina a lawe i ka lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe pālua i ka lāʻau lapaʻau.
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
- E ʻike pinepine i ke kauka: Pono ʻoe e ʻike i ke kauka i nā lā i hoʻonohonoho ʻia e nānā i ke ʻano o kāu keiki a inā paha e hana ana ka lāʻau.
- Nā hoʻāʻo koko: ʻOiai e lawe ana i kēia lāʻau lapaʻau, pono kāu keiki e hana i nā hoʻāʻo koko e nānā i kā lākou hana ate a me nā pae huaora.
- Nā Wikamina a me ka ʻIke Meaʻai: He mea nui e hōʻoia i ka loaʻa ʻana o kāu keiki i nā wikamina e pono ai (ʻoi aku hoʻi ʻo A, D, E, a me K). E kamaʻilio me ke kauka o kāu keiki e pili ana i ka ʻai a kāu keiki a me nā wikamina ʻē aʻe.
He aha kāu e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau? (Overdose)
Inā loaʻa iā ʻoe kahi kānalua iki ua hāʻawi ʻia kāu keiki i nā lāʻau lapaʻau he nui ma mua o kou manaʻo, mai hoʻonele i ka manawa a kāhea koke aku i ke Kikowaena ʻIke Poisons Lahui ma ka Halemai Lahui ʻo Colombo. A i ʻole, e lawe i kāu keiki i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa nā hopena ʻaoʻao. ʻAʻole loaʻa i nā kānaka a pau, akā he mea nui e makaʻala iā lākou.
| Ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao e pono ʻoe e hōʻike koke i kāu kauka | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, pehu o nā lehelehe, maka a i ʻole ke alelo, paʻakikī ke hanu. |
| Nā Hōʻailona o ka ʻeha o ke akepaʻa | Melemele o nā maka a i ʻole ka ʻili, mimi melemele/ʻeleʻele, ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, nalowale o ka makemake e ʻai, luhi nui. |
| Ka maʻi kahe nui (Diarrhea) | Nā noho palupalu pinepine. |
| Inā hoʻomau a hoʻopilikia paha, e haʻi i kāu kauka. | |
| ʻEha ʻōpū | He ʻeha ʻōpū maʻamau. |
| Ka luaʻi ʻana | Ka luaʻi ʻana. |
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Odevixibat i hoʻohana ʻia e kāohi i ka ʻāʻī ʻili nui i hoʻokumu ʻia e ka maʻi PFIC.
- Mai ale, nau, a wili paha i kēia lāʻau lapaʻau. E wehe i ke capsule, e kāwili i nā papa i loko me kahi meaʻai palupalu, a ale me ka nau ʻole.
- E hōʻoia e haʻi aku i ke kauka inā he mau maʻi ʻē aʻe kāu keiki, nā maʻi ʻaleka, a i ʻole ke lawe nei i nā lāʻau lapaʻau ʻē aʻe.
- Inā ʻike ʻoe i nā hōʻailona o ka hōʻino ʻia o ke akepaʻa (melemele o nā maka/ʻili, mimi ʻeleʻele), ka maʻi pākī nui, a i ʻole nā hopena maʻi ʻaleka, e ʻike koke i kāu kauka.
- Inā he mau nīnau kāu e pili ana i ka lāʻau lapaʻau, mai makaʻu e kamaʻilio me kāu kauka. Mai mālama ma muli o ke kuhi wale ʻana.
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