Nānā Phenylketonuria (PKU)

Anter

• He aha kahi hōʻike loiloi PKU?
• No ke aha ia e hoʻohana ai?
• No ke aha e pono ai i kaʻu pēpē i kahi hōʻike loiloi PKU?
• He aha ka hana ma kahi hōʻike hōʻike PKU?
• E pono paha wau e hana i kekahi mea e hoʻomākaukau ai i kaʻu pēpē no ka hoʻāʻo?
• Aia kekahi mau pilikia i ka hoʻāʻo?
• He aha ke ʻano o nā hopena?
• Aia kekahi mea ʻē aʻe e pono iaʻu e ʻike e pili ana i kahi hōʻike loiloi PKU?
• Nā kūmole

He aha kahi hōʻike loiloi PKU?

ʻO kahi hōʻike hōʻike PKU kahi hōʻike koko i hāʻawi ʻia i nā keiki hānau hou 24-72 mau hola ma hope o ka hānau ʻana. Kū ʻo PKU no phenylketonuria, kahi maʻi laha ʻole e pale i ke kino mai ka wāwahi pono ʻana i kahi mea i kapa ʻia ʻo phenylalanine (Phe). ʻO Phe kahi ʻāpana o nā protein i loaʻa i nā meaʻai he nui a i loko o kahi mea hoʻonaninani i kapa ʻia aspartame.

Inā loaʻa iā PKU a ʻai i kēia mau meaʻai, kūkulu ʻo Phe i loko o ke koko. Hiki i nā pae kiʻekiʻe o Phe ke hōʻino mau i ka ʻōnaehana hopohopo a me ka lolo, ke kumu o nā pilikia olakino. Hoʻopili kēia i ka hopu ʻana, nā pilikia psychiatric, a me ke kīnā koʻikoʻi koʻikoʻi.

Hoʻokumu ʻia ʻo PKU e ka hoʻololi kūlohelohe, kahi loli i ka hana maʻamau o kahi moʻokūʻauhau. ʻO nā Genes nā ʻāpana maʻamau o ka hoʻoilina i hoʻoili ʻia mai kou makuahine a me kou makuakāne. No ke keiki e loaʻa i kēia maʻi, pono ka makuahine a me ka makuakāne e hala i kahi genu PKU i hoʻohuli ʻia.

ʻOiai he kākaʻikahi ʻo PKU, koi ʻia nā keiki hānau hou a pau i United States e loaʻa kahi hōʻike PKU.

• Maʻalahi ka hoʻāʻo, me ka ʻaʻohe pilikia o ke olakino. Akā hiki iā ia ke hoʻopakele i kahi pēpē mai ka pōʻino o ka lolo a me / a i ʻole nā ​​pilikia olakino koʻikoʻi ʻē aʻe.
• Inā loaʻa ka PKU i ka wanaʻao, ma hope o kahi kūikawā, haʻahaʻa-protein / low-Phe ʻai hiki ke pale i nā pilikia.
• Aia kekahi hana i hana ʻia no nā pēpē me PKU.
• Pono nā poʻe me PKU e noho i ka protein / low-Phe papaʻai no ke koena o ko lākou ola.

Nā inoa ʻē aʻe: PKU kānana hānau hou, hōʻike PKU

No ke aha ia e hoʻohana ai?

Hoʻohana ʻia kahi hōʻike PKU e ʻike ai inā he kiʻekiʻe ke kiʻekiʻe o Phe i ke koko. ʻO kēia paha he PKU ka pēpē, a e kauoha ʻia nā hōʻike hou aku e hōʻoia a hōʻalo paha i kahi kuhi.

No ke aha e pono ai i kaʻu pēpē i kahi hōʻike loiloi PKU?

Koi ʻia nā keiki hānau i ʻAmelika Hui Pū ʻIa e loaʻa kahi hōʻike PKU. ʻO kahi hōʻike PKU kahi maʻa mau o nā moʻo o nā hōʻike i kapa ʻia he loiloi hānau hou. Pono paha kekahi mau keiki pēpē a me nā keiki e hoʻāʻo inā lawe ʻia lākou mai kahi ʻāina ʻē aʻe, a / a i ʻole inā he hōʻailona ko lākou o PKU, e pili pū ana me:

• Hoʻolālā hoʻolālā lohi
• Nā pilikia paʻakikī
• He ʻala musty i ka hanu, ka ʻili, a me / a i ʻole ka mimi
• ʻO ke poʻo liʻiliʻi liʻiliʻi (microcephaly)

He aha ka hana ma kahi hōʻike hōʻike PKU?

E hoʻomaʻemaʻe kahi mea mālama ola i kou kuʻekuʻe wāwae o kāu pēpē me ka waiʻona a kuʻi i ka kuʻekuʻe me kahi nila liʻiliʻi. E hōʻiliʻili ka mea hāʻawi i kahi mau kulu o ke koko a kau i kahi kaula ma ka pūnaewele.

Pono e hana ma ka hōʻike ma mua o 24 mau hola ma hope o ka hānau ʻana, e hōʻoia i ka lawe ʻana o ka pēpē i kekahi protein, mai ka waiū umauma a i ʻole haʻilula. E kōkua kēia e hōʻoia i ka hopena o nā hopena. Akā e hana ʻia ka hoʻāʻo ma waena o 24-72 mau hola ma hope o ka hānau ʻana e pale ai i nā pilikia PKU hiki. Inā ʻaʻole i hānau ʻia kāu pēpē i ka haukapila a i ʻole ʻoe i haʻalele mua i ka haukapila, e pono e kamaʻilio pū me ka mea mālama ola o kāu keiki e hoʻonohonoho i kahi hōʻike PKU i ka wā hiki loa.

E pono paha wau e hana i kekahi mea e hoʻomākaukau ai i kaʻu pēpē no ka hoʻāʻo?

ʻAʻohe hoʻomākaukau kūikawā e pono ai no kahi hōʻike PKU.

Aia kekahi mau pilikia i ka hoʻāʻo?

ʻAʻohe liʻiliʻi loa i kāu pēpē me ka hoʻāʻo o ka lāʻau kui. ʻIke paha kāu pēpē i kahi ʻuʻuku ke kuʻi ʻia ka kuʻekuʻe wāwae, a kū paha kahi ʻeha liʻiliʻi ma ka pūnaewele. E hele wikiwiki kēia.

He aha ke ʻano o nā hopena?

Inā ʻaʻole maʻamau nā hualoaʻa o kāu pēpē, e kauoha ana kāu mea mālama mālama ola i nā hoʻokolohua hou aku e hōʻoia a hōʻole paha iā PKU. Pili paha kēia mau hoʻāʻo i nā hoʻokolohua koko a me / a i ʻole nā ​​hoʻāʻo mimi. Hiki paha iā ʻoe a me kāu pēpē ke loaʻa nā hoʻokolohua kūlohelohe, ʻoiai he ʻano hoʻoilina ka PKU.

Inā maʻamau nā hopena, akā ua hana ka hōʻike ma mua o 24 mau hola ma hope o ka hānau ʻana, pono paha e hoʻāʻo hou kāu pēpē ma 1 a 2 mau pule o kou makahiki.

E aʻo hou aʻe e pili ana i nā hoʻokolohua hoʻokolohua, nā pae kuhikuhi, a me ka hoʻomaopopo ʻana i nā hopena.

Aia kekahi mea ʻē aʻe e pono iaʻu e ʻike e pili ana i kahi hōʻike loiloi PKU?

Inā ua kuhi ʻia kāu pēpē me PKU, hiki iā ia ke inu i ka lāʻau i loaʻa ʻole iā Phe. Inā makemake ʻoe e hānai, e kamaʻilio i kāu mea mālama ola. Loaʻa iā Phe ka waiū umauma, akā hiki i kāu pēpē ke loaʻa i kahi palena palena, i kākoʻo ʻia e ka hana manuahi Phe. Nānā ʻole, pono kāu keiki e noho ma ka papaʻai protein haʻahaʻa haʻahaʻa kūikawā no ke ola. ʻO ka papa PKU ke ʻano maʻamau o ka hōʻalo ʻana i nā meaʻai protein kiʻekiʻe e like me ka ʻiʻo, ka iʻa, nā hua manu, ka waiū, nā nati, a me nā pī. Ma kahi o ka papaʻai, e hoʻopili ʻia nā cereala, nā starches, nā huaʻai, kahi pani waiū, a me nā mea ʻē aʻe me Phe haʻahaʻa a ʻaʻole paha.

E paipai paha ka mea mālama ola i kāu keiki i hoʻokahi a ʻoi paha loea a me nā kumuwaiwai ʻē aʻe e kōkua iā ʻoe e hoʻokele i ka papaʻai a kāu pēpē a mālama i ke olakino maikaʻi o kāu keiki. Aia kekahi mau ʻano waiwai like ʻole i loaʻa i nā ʻōpio a me nā mākua me PKU. Inā loaʻa iā PKU, e kamaʻilio me kāu mea mālama ola e pili ana i nā ala maikaʻi loa e mālama ai i kāu papaʻai a me nā pono olakino.

Nā kūmole

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ʻAʻole pono e hoʻohana i ka ʻike ma kēia pūnaewele i pani no ka mālama olakino ʻoihana a ʻōlelo aʻoaʻo paha. Kāhea aku i ka mea mālama ola inā he nīnau kāu e pili ana i kou olakino.