Loaʻa i kāu keiki ka HLH? E aʻo kākou e pili ana i ka lāʻau pale ʻo Emapalumab (Gamifant)

He mea maʻamau ka makaʻu a me ka haʻalulu ke lohe ʻoe ua loaʻa i kāu keiki a i ʻole kekahi lālā o ka ʻohana kahi maʻi koʻikoʻi a laha ʻole e like me ka primary hemophagocytic lymphohistiocytosis (HLH). I ka manawa e like me kēia, he mea nui e hoʻomaopopo piha ʻia e pili ana i nā lāʻau lapaʻau a kāu kauka e ʻōlelo ai. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi lāʻau pale kūikawā i kapa ʻia ʻo Emapalumab, kahi i hoʻohana ʻia e kāohi i nā hōʻailona o kēia maʻi.

I ka ʻōlelo maʻalahi, he aha ʻo Emapalumab?

He ʻano lāʻau kūikawā ʻo Emapalumab i kapa ʻia he monoclonal antibody . E noʻonoʻo iā ia e like me kahi protein i hana kūikawā ʻia i loko o kahi keʻena hoʻokolohua e kāohi i ka hana o kahi ʻāpana kikoʻī o ka ʻōnaehana pale o ko mākou kino.

I kēia manawa, e nānā kākou pehea e kōkua ai kēia me HLH. I loko o HLH, lilo ka ʻōnaehana pale o ko mākou kino i mea hana nui a hoʻomaka e hoʻouka i nā ʻāpana olakino. Hana ʻo Emapalumab ma ke kāohi ʻana i kahi hōʻailona kemika i kapa ʻia ʻo interferon-gamma e hoʻoulu ai i kēia hana nui, e hōʻoluʻolu ana i ka ʻōnaehana pale.

Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau

Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui e hāʻawi i ke kauka i ka mōʻaukala olakino piha o kāu a i ʻole ka mea maʻi. E hōʻoia e haʻi pono i kēia mau mea.

• Nā maʻi o kēia manawa: Inā loaʻa iā ʻoe kekahi maʻi e like me ke kuni, ka ʻū, a i ʻole ke anu.
• E pili ana i nā lāʻau pale: Inā ua loaʻa iā ʻoe kekahi lāʻau pale i kēia manawa koke nei, a i ʻole ke hoʻolālā nei e loaʻa i hoʻokahi i ka wā e hiki mai ana.
• ʻO ka maʻi puʻupuʻu (TB): Pono ʻoe e haʻi i kāu kauka inā ua loaʻa iā ʻoe ka maʻi puʻupuʻu ma mua, ua loaʻa iā ʻoe kahi hoʻāʻo ʻili maikaʻi no ka maʻi puʻupuʻu, a i ʻole ua pili kokoke koke nei me kahi mea i loaʻa i ka maʻi puʻupuʻu.
• Nā maʻi ʻaleka: Inā he maʻi ʻaleka kou i kēia lāʻau lapaʻau Emapalumab a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
• Hāpai a me ka hānai waiū: Inā hāpai ʻoe, e hoʻāʻo ana e hāpai, a hānai waiū paha.

Ma muli o kēia ʻike, e hoʻoholo kāu kauka inā kūpono ke hāʻawi iā ʻoe i kēia lāʻau lapaʻau a me nā hana kūikawā āu e pono ai e hahai.

Pehea e hāʻawi ʻia ai kēia lāʻau lapaʻau?

He inikini ʻo Emapalumab i hāʻawi ʻia i loko o kahi aʻa (infusion). ʻAʻole hiki iā ʻoe ke hoʻohana ma ka home. Hāʻawi ʻia ia e kahi loea mālama ola i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau. E nānā pono lākou iā ʻoe i ka wā a ma hope o kāu mālama ʻana.

Hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki o kēlā me kēia makahiki, mai nā pēpē hānau hou a i nā keiki, inā pono. Eia nō naʻe, lawe ʻia nā hana palekana kūikawā i ka wā e hāʻawi ai i nā keiki. Hiki iā ʻoe ke kamaʻilio me kāu kauka pediatric no nā kikoʻī hou aku.

He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?

Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi papa manawa i hoʻonohonoho ʻia. No laila, he mea nui loa ia ʻaʻole e haʻalele i ka manawa o kāu kauka. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kāhea koke i kāu kauka a i ʻole ka haukapila a e hoʻomaopopo iā lākou.

He aha inā lawe nui wau i ka lāʻau lapaʻau?

Hāʻawi ʻia kēia ma kahi haukapila no laila ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, e kāhea koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo , a i ʻole e hele i ka Emergency Treatment Unit (ETU) kokoke loa.

Nā mea e noʻonoʻo ai i ka wā o ka mālama ʻana

• Hoʻāʻo ʻana i ka maʻi puʻupuʻu (TB): Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, e hoʻāʻo ʻia ʻoe no ka maʻi puʻupuʻu (TB). Inā kuhikuhi kāu kauka i ka lāʻau no ka maʻi puʻupuʻu, pono ʻoe e hoʻomaka e lawe i ka lāʻau lapaʻau ma mua o ka hoʻomaka ʻana iā Emapalumab a hoʻopau iā ia no ka manawa piha i kuhikuhi ʻia.
• Ka pilikia o ka maʻi: ʻOiai ke kāohi nei kēia lāʻau i ka ʻōnaehana pale, hiki ke hoʻonui iki ʻia ka pilikia o ka maʻi. No laila, inā loaʻa iā ʻoe nā hōʻailona e like me ke kuni, ke anu, ka ʻāʻī ʻeha, a i ʻole ke kuni , mai hoʻōla ponoʻī a e hoʻomaopopo koke i kāu kauka. E ho'āʻo e noho mamao aku mai ka poʻe maʻi.
• Nā lāʻau lapaʻau ʻē aʻe: E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe, nā huaora, a i ʻole nā ​​​​lāʻau lapaʻau lāʻau āu e lawe nei. ʻOi aku ka maikaʻi, pono ʻoe e pale i ka loaʻa ʻana o nā lāʻau pale ola i ka wā e lawe ana i kēia lāʻau.

He aha nā hopena ʻaoʻao e hiki iaʻu ke ʻike?

E like me nā lāʻau lapaʻau āpau, hiki iā Emapalumab ke hana i nā hopena ʻaoʻao, ʻoiai ʻaʻole i loaʻa i nā kānaka a pau.

ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau . Inā loaʻa iā ʻoe kekahi mea ʻē aʻe, e ʻoluʻolu e ʻimi i ke kōkua lapaʻau.