Maopopo iaʻu kou hopohopo ma ke ʻano he makua ke lohe ʻoe ua loaʻa i kāu keiki nā maʻi ʻōʻili i hoʻoulu ʻia e kahi maʻi laha ʻole i kapa ʻia ʻo CDKL5. I ka manawa e like me kēia, pehea ka mana o ka aʻo ʻana e pili ana i kahi lāʻau e hiki ke hoʻomalu i ke kūlana o kāu keiki? I kēia lā e kamaʻilio mākou e pili ana i kahi lāʻau lapaʻau wai i kapa ʻia ʻo Ganaxolone e lawe mai ana i kēlā manaʻolana, a ua ʻōlelo kūikawā ʻia no kēia kūlana.
He aha ka Ganaxolone?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau wai waha ʻo Ganaxolone . Loaʻa pū ia ma lalo o ka inoa inoa ʻo Zytalmy. Hoʻohana nui ʻia ia e kāohi i nā hopu ʻana i nā poʻe me kahi maʻi genetic laha ʻole i kapa ʻia ʻo cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) .
ʻO kēia maʻi i kapa ʻia ʻo CDKL5 ka mea maʻamau e hoʻoulu pinepine ai i nā hopu ʻana i nā keiki ʻōpio. No laila hiki i kēia lāʻau lapaʻau ke lawe mai i ka hōʻoluʻolu nui iā lākou. Eia nō naʻe, i kekahi manawa hiki i kāu kauka ke kuhikuhi i kēia lāʻau lapaʻau no nā kūlana olakino ʻē aʻe. No laila inā he mau nīnau kāu, ʻoi aku ka maikaʻi o ka nīnau ʻana i kāu kauka e pili ana i ia mea a wehewehe iā ia.
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 hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e hāʻawi i kāu kauka i kahi wehewehe piha o kāu mōʻaukala olakino a kāu keiki paha. Inā loaʻa iā ʻoe kekahi o nā kūlana i helu ʻia ma ka papa ma lalo nei, e hōʻoia e haʻi iā lākou e pili ana i ia mea.
| Kou kūlana a i ʻole kou ʻano maʻamau | No ke aha ʻoe e haʻi aku ai i ke kauka? |
|---|---|
| Kaumaha a i ʻole nā manaʻo pepehi kanaka | Hiki i kēia lāʻau lapaʻau ke hoʻololi i nā kūlana noʻonoʻo i kekahi manawa, no laila e makaʻala loa kāu kauka e pili ana i ia mea. |
| Maʻi akepaʻa | Kōkua ke akepaʻa i ka wehe ʻana i kēia lāʻau lapaʻau mai ke kino. Inā loaʻa iā ʻoe nā pilikia akepaʻa, pono paha e hoʻoponopono ʻia kāu mahele lāʻau. |
| ʻAi ʻona lāʻau a waiʻona paha | Hiki i ka waiʻona a me kekahi mau lāʻau lapaʻau ke hoʻopilikia i ke ʻano o ka hana ʻana o kēia lāʻau lapaʻau a hiki ke hoʻonui i ka hiamoe. |
| Nā maʻi ʻaleka i ka ganaxolone a i ʻole nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, a i ʻole nā mea hoʻoluʻu | E kōkua kēia iā ʻoe e ʻike ma mua inā loaʻa iā ʻoe kahi maʻi allergy. |
| Ke hāpai nei a i ʻole e hoʻāʻo nei e hāpai | Pono ʻoe e kūkākūkā i ka palekana o kēia lāʻau lapaʻau i ka wā hāpai me kāu kauka. |
| Ka hānai ʻana i ka pēpē me ka waiū umauma | Pono ʻoe e kamaʻilio me kāu kauka e pili ana i ka hele ʻana o ka lāʻau lapaʻau i ka pēpē ma o ka waiū umauma a me kona hopena. |
Pehea pololei ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
He mea nui loa ka hāʻawi pololei ʻana i kēia lāʻau. Eia kekahi mau ʻōlelo aʻoaʻo no ka hana ʻana.
- E hāʻawi me ka meaʻai: E hāʻawi mau i kēia lāʻau lapaʻau me ka meaʻai .
- E hāʻawi i ka manawa kūpono: E hoʻomaʻamaʻa i ka lawe ʻana i kāu lāʻau lapaʻau i ka manawa like i kēlā me kēia lā. E kōkua kēia i ka mālama ʻana i nā pae like o ka lāʻau lapaʻau i loko o kou kino.
- E lulu maikaʻi: Ma mua o ka hāʻawi ʻana i ka lāʻau lapaʻau, mai poina e lulu maikaʻi i ka ʻōmole .
- E hoʻohana i ka mea hana kūpono: E hoʻohana i ka syringe waha a i ʻole ke kīʻaha ana e hele mai me ka lāʻau lapaʻau e ana iā ia. Mai hoʻohana i nā punetēpuni hale , no ka mea, ʻaʻole paha i loaʻa iā lākou nā ana pololei a hiki ke hopena i kahi mahele lāʻau hewa.
- Mai ho'ōki koke: Mai ho'ōki i ka lawe ʻana i ka lāʻau lapaʻau ke ʻole ke kuhikuhi ʻia e kāu kauka. ʻO ka hoʻōki koke ʻana hiki ke hana i nā hopena koʻikoʻi.
E loaʻa iā ʻoe kahi pepa kuhikuhi kūikawā (MedGuide) me kēia lāʻau lapaʻau. E heluhelu pono i kēlā me kēia manawa. E loaʻa pū iā ʻoe kahi pepa kuhikuhi no ka hoʻohana ʻana i ka lāʻau lapaʻau. Inā he mau nīnau kāu e pili ana i ia mea, e nīnau i kāu kauka no ka wehewehe ʻana.
I ka hāʻawi ʻana i nā keiki
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki a hiki i ka 2 mau makahiki ma ke ʻōlelo a ke kauka, akā pono ka mālama kūikawā a me ka nānā ʻana i ka wā e hāʻawi ai.
He aha inā e hala iaʻu kahi mahele lāʻau a lawe nui loa?
Inā ʻoe e haʻalele i kahi ʻai ...
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 ka lāʻau.
Inā lawe ʻoe i ka nui loa (overdose) ...
Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, e hele koke i ka ʻOihana Hoʻopilikia o ka haukapila kokoke loa (ETU). A i ʻole, hiki iā ʻoe ke kelepona i ke Kikowaena ʻIke ʻAihue Lahui ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
Nā mea ʻē aʻe e launa pū me kēia lāʻau lapaʻau (Nā Hana like ʻana)
Hiki iā Ganexolone ke launa pū me kekahi mau lāʻau lapaʻau ʻē aʻe āu e lawe nei. No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau, nā huaora, a me nā lāʻau lapaʻau āu e lawe nei.
| ʻAno lāʻau a mea paha | Nā laʻana a me nā memo |
|---|---|
| ʻAila | E pale i ka inu ʻana i ka waiʻona. Hoʻonui ia i ka hiamoe a me ka poniuniu i hoʻokumu ʻia e ka lāʻau lapaʻau. |
| Lāʻau lapaʻau no ka hopohopo a i ʻole ka hiamoe | Hiki i kēia mau mea ke hoʻonui hou aku i ka hiamoe. |
| ʻO kekahi mau lāʻau lapaʻau no ke kaumaha | Eia kekahi laʻana: amitriptyline, fluoxetine, sertraline |
| Nā lāʻau anticonvulsant ʻē aʻe | Eia kekahi laʻana: carbamazepine, phenobarbital, phenytoin |
| Nā lāʻau hoʻomaʻamaʻa laulā | E haʻi i kāu mau kauka e lawe ana ʻoe i kēia lāʻau lapaʻau ma mua o ke ʻoki ʻana. |
| ʻO Rifampin, he lāʻau antibiotic | Hiki paha i kēia ke hōʻemi i ka pono o ka ganaxolone. |
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i ka ganaxolone ke hana i nā hopena ʻaoʻao. He koʻikoʻi kekahi, a he mea maʻamau kekahi. He mea nui e makaʻala i kēia mau mea.
| Ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| Ke hiamoe nei i ka wā o ka hana o ke ao | Ka hiamoe ʻana me ka manaʻo ʻole ma muli o ka hiamoe nui loa. |
| Nā loli noʻonoʻo | Ka huhū koke, ka hoʻonāukiuki, ka piʻi ʻana o ke kaumaha, a i ʻole nā manaʻo pepehi kanaka. |
| Nā mea e haʻi aku ai i kāu kauka inā hoʻomau a hoʻopilikia paha lākou | |
| Hiamoe | ʻO ka mea maʻamau kēia i nā pae mua o ka hoʻomaka ʻana o ka lāʻau lapaʻau. |
| Ke kuha ʻana i ka lawai mai ka waha mai | Hoʻonui ʻia ka hana ʻana o ka lawai. |
| kuni | Hoʻonui ʻia ka mahana o ke kino. |
| Nā hōʻailona e like me ke anu | Ihu wai a i ʻole ka ihu paʻa. |
Pehea e mālama ai a hoʻolei aku i ka lāʻau lapaʻau me ka palekana?
Ka Waihona
E mālama i kēia lāʻau lapaʻau mai ka hiki ʻana aku o nā keiki a me nā holoholona . ʻOi aku ka maikaʻi o ka mālama ʻana iā ia ma ka mahana o ka lumi (ma waena o 20-25 kekelē Celsius). E hoʻolei i ke koena o nā lāʻau lapaʻau 30 mau lā ma hope o ka wehe ʻana i ka ʻōmole a i ʻole ma hope o ka lā pau.
Wehe ʻana
Hiki i kēia lāʻau lapaʻau ke lilo i mea weliweli loa a make paha inā e ʻai ʻia e kekahi pākeke, keiki, a holoholona paha. No laila, he mea nui e hoʻolei pono i ka lāʻau lapaʻau i hoʻohana ʻole ʻia a i ʻole i pau ka lāʻau.
Inā hiki iā ʻoe, e lawe i kēia mau mea i kahi papahana lawe lāʻau lapaʻau. E nīnau i kāu hale kūʻai lāʻau lapaʻau a i ʻole nā luna kūloko e pili ana i kēia. Inā ʻaʻole, e nānā i ka lepili e ʻike inā he mea maikaʻi ke hoʻolei iā lākou i loko o ka ʻōpala. Inā hana ʻoe, e kāwili i ka lāʻau lapaʻau wai me kahi mea e like me ka ʻōpala pōpoki, ka lepo, a i ʻole nā mea i kāwili ʻia i ke kofe, e waiho i loko o kahi ʻeke a i ʻole ka pahu i hoʻopaʻa paʻa ʻia, a hoʻolei i loko o ka ʻōpala. Inā ʻaʻole ʻoe maopopo, e nīnau i kāu kauka.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Ganaxolone i hoʻohana ʻia e kāohi i nā hopu ʻana i hoʻokumu ʻia e kahi kūlana i kapa ʻia ʻo CDKL5.
- E hāʻawi mau i kēia lāʻau lapaʻau me ka meaʻai, me ka hoʻohana ʻana i ka mea ana kūikawā i hāʻawi ʻia e ke kauka.
- Mai ho'ōki koke i ka lawe ʻana i ka lāʻau me ka ʻole o ke aʻo ʻana a ke kauka.
- ʻOiai e lawe ana i kēia lāʻau lapaʻau, e makaʻala i nā loli i kou kūlana noʻonoʻo, ke kaumaha, a i ʻole nā manaʻo pepehi kanaka. Inā hana kēia, e haʻi koke i kāu kauka.
- E hoʻolei aku i nā lāʻau lapaʻau i hoʻohana ʻole ʻia a i ʻole nā lāʻau lapaʻau i pau me ka maluhia, ma kahi hiki ʻole i nā keiki a me nā holoholona ke loaʻa.
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