Ua kuhikuhi ʻia anei ʻoe a i ʻole kekahi āu i ʻike ai i kahi lāʻau i kapa ʻia ʻo cysteamine e ke kauka? Inā pēlā, he mea nui e aʻo iki e pili ana i kēia lāʻau. Manaʻo paha ʻoe he mea ʻē iki ka lohe ʻana i ka inoa, akā mai hopohopo. E kamaʻilio maʻalahi kākou e pili ana i ia mea, me he mea lā e kamaʻilio ana ʻoe me kahi hoaaloha.
He aha ke ʻano lāʻau lapaʻau ʻo cysteamine?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau ka cysteamine e kōkua ana i ka wāwahi ʻana i kahi mea i kapa ʻia ʻo cystine i loko o ko kākou kino. ʻO ke kikoʻī, hoʻohana ʻia ia e mālama i kahi maʻi i kapa ʻia ʻo nephropathic cystinosis . He maʻi kēia e hiki ke hoʻopilikia i nā keiki ʻōpio a me nā pākeke.
E noʻonoʻo e pili ana i ia mea, ke hana pono ʻole nā mea i loko o ko kākou kino, hiki i kekahi mau mea ke hōʻiliʻili nui. No ka laʻana, i loko o ke kanaka me ka cystinosis nephropathic, hōʻiliʻili kahi waikawa amino i kapa ʻia ʻo cystine i loko o ke kino, ʻoi aku hoʻi i loko o nā puʻupaʻa. Hiki i kēia ke hōʻino i nā puʻupaʻa. Kōkua ʻo Cysteamine i ka hōʻemi ʻana i ka nui o ka cystine.
He mea nui e hoʻomanaʻo: ʻAʻole kēia lāʻau lapaʻau he lāʻau lapaʻau piha no ka maʻi. Eia naʻe, hiki iā ia ke kōkua i ka kaohi ʻana i ka maʻi a hōʻemi i kona pōʻino. No laila, he mea nui e hoʻohana pono ia e like me ke kuhikuhi a kāu kauka.
Hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau e nā kauka no nā kūlana ʻē aʻe. Inā he mau nīnau kāu e pili ana i ia mea, e nīnau i kāu kauka a mea kūʻai lāʻau paha. Loaʻa pinepine ʻia kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo Cystagon .
He aha kaʻu e haʻi aku ai i ka hui lapaʻau ma mua o ka hoʻohana ʻana i kēia lāʻau?
Ma mua o kou hoʻomaka ʻana e hoʻohana i ka cysteamine, e haʻi pono i kāu kauka a i ʻole ka hui mālama ola e pili ana i:
- Inā loaʻa iā ʻoe kekahi o kēia mau mea:
- Nā pilikia iwi (e.g., nā iwi nāwaliwali, nā haki maʻalahi)
- Kaumaha a i ʻole nā pilikia ʻē aʻe o ka ʻōnaehana nerve
- Inā he moʻolelo kou no nā maʻi koko
- Inā ua loaʻa iā ʻoe ke kahe koko o ka ʻōpū ma mua (moʻolelo o ke kahe koko o ka ʻōpū)
- Maʻi akepaʻa - no ka mea, ua hana ʻia nā lāʻau he nui e ke akepaʻa.
- Nā hopu ʻana, e like me ka epilepsy
- Nā kūlana ʻili a i ʻole nā ʻano naʻau
- Nā pilikia o ka ʻōpū a i ʻole ka naʻau
- Inā loaʻa iā ʻoe kahi hopena alerika i kēia:
- No ka cysteamine
- ʻO ka lāʻau lapaʻau penicillamine
- ʻO nā lāʻau lapaʻau ʻē aʻe, meaʻai, kala a mea hoʻomalu paha
- Inā ʻoe e hāpai ana a i ʻole e hoʻāʻo ana e hāpai.
- Inā he makuahine hānai waiū ʻoe.
He mea nui loa e haʻi aku i kāu kauka i kēia ʻike āpau, no ka mea, a laila wale nō e hiki ai iā lākou ke hoʻoholo inā kūpono kēia lāʻau lapaʻau iā ʻoe a i ʻole pono ʻoe e mālama pono.
Pehea e pono ai iaʻu ke hoʻohana i kēia lāʻau lapaʻau?
Loaʻa kēia lāʻau lapaʻau ma ke ʻano he capsule āu e lawe ai ma ka waha. E lawe me ke aniani wai. E hahai i nā kuhikuhi ma ka lepili kauoha e like me ke kauoha a kāu kauka.
- I kekahi manawa hiki iā ʻoe ke wehe i ke capsule a kāwili i ka lāʻau lapaʻau i loko o kahi meaʻai pauka. Akā e nīnau i kāu kauka a mea kūʻai lāʻau paha ma mua o ka hana ʻana pēlā.
- E lawe i ka lāʻau lapaʻau i ka manawa kūpono, ma ka nui kūpono . Mai lawe ʻoi aku a ʻoi aku paha ma mua o ka mea a kāu kauka e ʻōlelo ai.
Inā hāʻawi ʻoe i kēia lāʻau lapaʻau i nā keiki:
Ua kuhikuhi ʻia kēia lāʻau lapaʻau no nā keiki i kekahi mau hihia. Eia nō naʻe, e kamaʻilio pono me kāu kauka pediatric a hahai i kāna mau kuhikuhi. Aia paha he mau hana palekana kūikawā e pono e hana ʻia i ka hāʻawi ʻana i ka lāʻau lapaʻau i nā keiki.
He aha kāu e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau? (Overdosage):
Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, e kāhea koke i kahi kikowaena kaohi lāʻau make a i ʻole ke keʻena pilikia kokoke loa. Mai hoʻonele i ka manawa.
Mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me nā poʻe ʻē aʻe, ʻoiai inā loaʻa iā lākou nā hōʻailona like me ʻoe.
He aha kāu e hana ai inā e poina ʻoe i 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 ʻoi aku ka liʻiliʻi ma mua o 2 mau hola a hiki i kāu lāʻau aʻe, e kāpae i ka lāʻau i hala ʻole a lawe i kāu lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i kahi lāʻau pālua a i ʻole kahi lāʻau keu.
He aha nā mea ʻē aʻe e hiki ke launa pū me kēia lāʻau lapaʻau?
ʻAʻole i manaʻo ʻia kēia lāʻau lapaʻau e hana i nā pilina nui. Eia nō naʻe, ʻaʻole paha e loaʻa i kēia papa inoa nā pilina āpau.
No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei (i kauoha ʻia a i ʻole ma luna o ke kūʻai aku), nā mea kanu, a me nā mea hoʻohui meaʻai. Eia kekahi, e haʻi i kāu kauka inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai. Hiki i kekahi mau mea ke launa pū me kāu lāʻau lapaʻau.
He aha nā mea e makaʻala ai i ka wā e hoʻohana ai i kēia lāʻau lapaʻau?
- E ʻike i kāu kauka no nā nānā maʻamau. Pono ʻoe e loaʻa i nā hoʻāʻo koko maʻamau e nānā i kāu helu koko i ka wā e lawe ana i kēia lāʻau.
- Ua hiamoe ʻoe a ua poniuniu paha.Hiki paha iā ʻoe ke ʻike i ka poniuniu. E pale i ka hoʻokele ʻana, ka hoʻohana ʻana i nā mīkini, a i ʻole ka hana ʻana i kekahi mea e pono ai ka makaʻala a hiki i kou ʻike pono ʻana i ke ʻano o ka hopena o kēia lāʻau lapaʻau iā ʻoe.
- Mai kū koke a noho paha i lalo, ʻoiai inā he ʻelemakule ʻoe. Hiki i kēia ke hōʻemi i ka pilikia o ka poniuniu a me ka hāʻule ʻana.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i ka cysteamine ke hana i kekahi mau hopena ʻaoʻao. He koʻikoʻi kekahi, aʻo kekahi ʻaʻole maʻamau.
Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka a i ʻole ke kauka lapaʻau:
- Nā hopena maʻi: ka ʻili ʻulaʻula, ka maneʻo a i ʻole ka hives, ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo.
- ʻEha a haki paha ka iwi.
- Nā pilikia hanu.
- Nā loli i ka ʻike.
- Ka huikau, ke kaumaha, a i ʻole nā loli ʻē aʻe o ka naʻau.
- Mimi ʻeleʻele.
- ʻEha maka.
- Ke manaʻo nei i ka nāwaliwali a i ʻole ke poʻo māmā, hāʻule.
- Nā hōʻailona e like me ke kuni a i ʻole ke anu, ʻeha ka puʻu.
- Ka maʻi laulā a i ʻole nā hōʻailona e like me ka maʻi palū.
- Ka luaʻi, ka luaʻi.
- Nā ʻeha ʻili poni.
- Ke kani nei i nā pepeiao.
- Nā ʻōʻili.
- Ka pilikia me ke kahe ʻana o ka mimi a i ʻole ka loli ʻana o ka nui o ka mimi.
- Ke kahe koko ʻana a i ʻole ka palapū maʻamau ʻole.
- Manaʻo nāwaliwali a luhi paha.
- Melemele o nā maka a i ʻole ka ʻili - He pilikia paha kēia i ke akepaʻa.
Inā ʻike ʻoe i kekahi mea e like me kēia, e ʻimi koke i ke kōkua lapaʻau.
Nā hopena ʻaoʻao ʻaʻole pono ka mālama lapaʻau (akā pono e hōʻike i ke kauka inā hoʻomau a hoʻopilikia paha):
- Ka paʻa ʻana o ka ʻōpū a i ʻole ka maʻi kahe.
- Hiamoe.
- ʻEha poʻo .
- Ka nalowale o ka makemake.
- ʻŌpū ʻeha.
- Hanu ʻoluʻolu ʻole.
ʻAʻole paha e komo pū kēia papa inoa me nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē, e haʻi i kāu kauka. Inā makemake ʻoe, hiki iā ʻoe ke hōʻike i nā hopena ʻaoʻao i ka FDA (Food and Drug Administration) ma 1-800-FDA-1088.
Pehea e mālama ai i kaʻu lāʻau lapaʻau?
- E mālama iā ia mai ka hiki ʻana aku o nā keiki. He mea nui loa kēia.
- E mālama ma ka mahana o ka lumi (ma waena o 20 a me 25 kekelē Celsius, a i ʻole 68 a me 77 kekelē Fahrenheit).
- E mālama i kahi maloʻo, mai ka mālamalama pololei .
- E hoʻolei i ka lāʻau lapaʻau i pau me ka hoʻohana ʻole ʻana.
ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)
ʻAe, ua kamaʻilio nui mākou e pili ana i ka cysteamine. E hoʻomanaʻo, he lāʻau koʻikoʻi kēia e kōkua ai i ka mālama ʻana i kahi maʻi i kapa ʻia ʻo nephropathic cystinosis.
ʻO ka mea nui loa, ʻo ia ka lawe ʻana i kēia lāʻau lapaʻau e like me ka ʻōlelo a kāu kauka iā ʻoe, ma ke ana kūpono, i ka manawa kūpono. Mai hoʻololi i ka ana a i ʻole e hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau ma kāu iho.
- Inā he mau nīnau a hopohopo paha kāu, mai kānalua e nīnau i kāu kauka, kauka lāʻau lapaʻau, a i ʻole ka mea mālama ola kino.
- E makaʻala i nā hopena ʻaoʻao, ʻoiai inā ʻike ʻoe i kekahi o nā hopena ʻaoʻao koʻikoʻi a mākou i kamaʻilio ai, a e ʻimi koke i ke kōkua lapaʻau.
- E hele no nā hoʻokolohua lapaʻau maʻamau.
He hōʻuluʻulu manaʻo wale nō kēia pepa ʻike. ʻAʻole paha e uhi i nā kikoʻī āpau. ʻO kāu kauka ke kanaka maikaʻi loa e hāʻawi iā ʻoe i ka ʻōlelo aʻoaʻo kūpono loa no kou kūlana. No laila, e kamaʻilio me ia e pili ana i nā mea āpau a hoʻoponopono iā ia. Ke makemake nei iā ʻoe e ho'ōla koke!
ʻO Cysteamine, cystinosis nephropathic, cystine, Cystagon, nā lāʻau lapaʻau, maʻi puʻupaʻa
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