ʻO ka lāʻau pale Fosdenopterin: Manaʻolana hou no nā keiki e kū nei i kahi maʻi laha ʻole

Pīhoihoi kekahi makua i ka ʻike ʻana he maʻi koʻikoʻi loa kā kā lākou keiki. He manaʻo kōkua ʻole loa ia. Eia nō naʻe, me ka holomua o ka lāʻau lapaʻau hou, aia nā lāʻau lapaʻau i kēia lā no kekahi mau maʻi i manaʻo mua ʻia he hiki ʻole ke hoʻōla ʻia. I kēia lā e kamaʻilio mākou e pili ana i kahi lāʻau pale kūikawā i kapa ʻia ʻo Fosdenopterin, kahi i hoʻohana ʻia no kekahi ʻano maʻi genetic kakaʻikahi akā koʻikoʻi, ʻo 'Molybdenum Cofactor Deficiency Type A'.

I ka ʻōlelo maʻalahi, he aha ka Molybdenum Cofactor Deficiency Type A?

He inoa paʻakikī iki kēia, akā e mālama kākou i ka maʻalahi. E noʻonoʻo he hale hana nui ko kākou kino. Loaʻa i kēia hale hana nā mīkini liʻiliʻi (nā enzymes) e hana ana i nā hana like ʻole. I mea e hana pono ai kēia mau mīkini, pono lākou i kahi mea kōkua kūikawā (he cofactor). ʻO ka molybdenum cofactor kekahi o ia mau mea kōkua koʻikoʻi.

ʻAʻole hiki i nā keiki me kahi maʻi genetic i kapa ʻia ʻo Molybdenum Cofactor Deficiency Type A ke hana i kēia ʻāpana. A laila e pau ka hana ʻana o nā mīkini i loko o kēlā hale hana. ʻO ka hopena, hoʻomaka nā kemika ʻino a ʻawahia (no ka laʻana, nā sulfites) e hōʻiliʻili i loko o ka lolo a me ke kino. Hiki i kēia ke kumu i ke keiki e loaʻa ai nā maʻi neurological koʻikoʻi, nā hopu ʻana, a me ka make.

He aha ka mea e hana ʻia me ka lāʻau pale Fosdenopterin?

ʻO kēia kahi e hoʻopakele mai ai ka lāʻau lapaʻau ʻo Fosdenopterin (inoa inoa: Nulibry). ʻAʻole ia he lāʻau lapaʻau no nā maʻi āpau, akā hana ia i kahi mea nui loa.

Ke hāʻawi ʻia kēia, hoʻomaka hou nā mīkini hana ʻole (nā enzymes) i loko o ke kino e hana. A laila e pau ka hōʻiliʻili ʻana o kēlā mau kemika ʻawahia, a hoʻomaka lākou e hoʻokuʻu ʻia mai ke kino. No laila, kōkua nui ia i ka hōʻemi ʻana i ka pilikia o ka make ma muli o ka maʻi. No laila, ua like kēia me kahi makana o ke ola no kahi keiki e like me kēia.

E hōʻoia e haʻi i kāu kauka i kēia mau mea ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau.

Ma mua o ka hāʻawi ʻana i kēia lāʻau lapaʻau i kāu keiki, he mea nui loa ia e ʻike ka hui lapaʻau i kekahi mau mea. E kūkākūkā pono i kēia ʻike me kāu kauka.

Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?

He inikini ʻo Fosdenopterin i hāʻawi ʻia i loko o kahi aa koko . Hāʻawi pinepine ʻia ia ma kahi haukapila a i ʻole ke keʻena lapaʻau e nā limahana lapaʻau i aʻo ʻia. Eia nō naʻe, i kekahi manawa, e kuhikuhi paha kāu kauka iā ʻoe e hāʻawi i ka inikini ma ka home.

• E hāʻawi i ka manawa kūpono: He mea nui loa e hāʻawi i kēia lāʻau pale i ka manawa like i kēlā me kēia lā, e like me ke kauoha a kāu kauka. E hoʻomau i ka lāʻau a hiki i ka wā e ʻōlelo ai kāu kauka e hoʻōki.
• Inā hāʻawi ʻia kēia iā ʻoe ma ka home: Inā e aʻo ʻia ana ʻoe e hāʻawi i kēia ma ka home, e heluhelu a hoʻomaopopo pono i nā kuhikuhi. Inā he mau nīnau kāu, e nīnau hou i kāu kauka a kahu maʻi paha.

Ka hoʻolei palekana ʻana i nā nila a me nā syringe

Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Pono e waiho ʻia i loko o kahi pahu i hoʻolālā kūikawā ʻia (pahu ʻoi) . Inā ʻaʻohe āu, hiki i kāu kauka ke kiʻi i hoʻokahi. He mea nui loa kēia no ka palekana o kāu keiki a me nā mea a pau o ka ʻohana.

He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?

• Inā ma ka haukapila/keʻena lapaʻau: Mai poina i ka lā i hāʻawi ʻia ai ka lāʻau lapaʻau i kāu keiki. Inā ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kāhea koke aku i kāu kauka a e hoʻomaopopo iā lākou.
• Inā ʻoe e hāʻawi ana ma ka home: Inā ʻoe e poina i kahi lāʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. A laila, e kali ma ka liʻiliʻi he 6 mau hola ma hope o ka lāʻau i poina a hiki i kāu lāʻau i hoʻonohonoho ʻia aʻe.E hāʻawi. Mai hāʻawi pālua i ka mahele lāʻau. Inā kānalua, e kamaʻilio me kāu kauka.

Nā hopena ʻaoʻao a me nā mea e pono ai mākou e makaʻala

E like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa kekahi mau hopena ʻaoʻao. He mea nui e makaʻala i kēia mau mea a hana koke inā pono.

E makaʻala i ka lā!

ʻOi aku paha ka ʻili o kāu pēpē i ka lā (photosensitive) i ka wā e lawe ana i kēia lāʻau. No laila, e pale i ka hōʻike ʻana i kāu pēpē i ka lā ikaika. Inā ʻoe e hele i waho, e ʻaʻahu i nā lole pale a hoʻohana i kahi sunscreen kūpono, e like me ka ʻōlelo a kāu kauka.

Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?

Ma muli o ka ʻike o kēia manawa, ʻaʻole i hōʻike ʻia ʻo fosdenopterin e hoʻopili i kekahi mau pilina kikoʻī me nā lāʻau lapaʻau ʻē aʻe. Eia nō naʻe, he mea nui loa ia e hāʻawi i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau ʻē aʻe, nā huaora, nā lāʻau lapaʻau lāʻau (e like me nā decoctions, arishta), a i ʻole nā ​​​​mea hoʻohui meaʻai a kāu keiki e lawe nei.

Pehea ʻoe e mālama ai i ka lāʻau lapaʻau? (He mea nui loa kēia)

ʻO ka pono o kēia lāʻau lapaʻau e pili ana i kona mālama pono ʻana, no laila e hahai pololei i kēia mau kuhikuhi.

• Nā ʻōmole i wehe ʻole ʻia: Pono e mālama ʻia kēia mau mea i loko o ka pahu hau ma kahi mahana ma waena o -25 a me -10 degere Celsius. E mālama i loko o ka pahu kumu a hiki i ka hoʻohana ʻana, me ka pale ʻia mai ka mālamalama. E wehe mai ka pahu hau 30 mau minuke ma mua o ka hoʻohana ʻana.
• Ma hope o ke kāwili ʻana: Ma hope o ke kāwili ʻana i ka pauka lāʻau lapaʻau me ka wai, hiki ke mālama ʻia ma ka mahana o ka lumi (15-25 Celsius) a i ʻole i loko o ka pahu hau (2-8 Celsius). Eia nō naʻe, pono e hāʻawi ʻia i ke keiki i loko o 4 mau hola o ke kāwili ʻana .
• E hoʻolei i nā lāʻau lapaʻau i pau ka lā a i ʻole nā ​​​​​​lāʻau lapaʻau i koe. E noi i kāu kauka no ka ʻōlelo aʻo no ka hoʻolei ʻana iā lākou me ka palekana.