Ma ke ʻano he makuahine a makua paha, ʻo kou manaʻolana nui loa he keiki olakino. Akā i kekahi manawa, me nā mea a mākou e lohe ai a ʻike ai, ʻoiai ke lohe mākou e pili ana i nā maʻi laha ʻole e hoʻopilikia ana i nā keiki, makaʻu loa mākou. Akā ʻo ka mea nui ma mua o ka makaʻu, ʻo ia ka loaʻa ʻana o kahi ʻike pololei a maʻalahi hoʻi o kēlā mau mea. I kēia lā, e kamaʻilio mākou e pili ana i kekahi maʻi laha ʻole, akā he mea pono ke makaʻala ʻia e nā mākua . ʻO ia ʻo Lissencephaly.
I ka ʻōlelo maʻalahi, he aha ka Lissencephaly?
He maʻi laha ʻole ka Lissencephaly i ka wā hāpai , i ka wā e ulu ana kahi pēpē i loko o ka ʻōpū, i ka wā e ulu ai ka lolo o ka pēpē. ʻO ka maʻamau, i ka wā e ulu ai ka lolo o kahi pēpē olakino, ulu ia i nā ʻāpana he nui a me nā wrinkles ma kona ʻili. E noʻonoʻo e like me ka hoʻopaʻa ʻana i kahi ʻāpana pepa nui i loko o kahi pahu liʻiliʻi. ʻO kēia mau ʻāpana ka mea e hiki ai i ka lolo ke hana pono i kāna hana paʻakikī.
Akā i ke ʻano o Lissencephaly, ʻaʻole i hana pono ʻia kēia mau wrinkles ma waena o nā pule 9 a me 12 o ka hāpai ʻana. ʻO ka hopena, ua lilo pinepine ka ʻili o ka lolo i ʻano laumania . ʻO ka huaʻōlelo "Lissencephaly" ʻo ia hoʻi "lolo laumania."
ʻAʻole like ka hopena o kēia maʻi i nā keiki āpau. ʻOiai ke ulu nei kekahi mau keiki ma nā wikiwiki kokoke i ka maʻamau, ʻaʻole paha e ulu aʻe kekahi ma mua o ka pae o kahi pēpē 5 mahina. ʻOiai ʻaʻohe lāʻau lapaʻau no kēia maʻi, hiki i ka mālama kākoʻo ke kōkua i ka kaohi ʻana i nā hōʻailona a hoʻomaʻalahi i ke ola no ke keiki. ʻOiai hiki i kēia maʻi ke hoʻoweliweli i ke ola no kekahi mau keiki, ola kekahi mau keiki a hiki i ka wā makua.
Aia kekahi mau ʻano like ʻole o kēia ʻano maʻi?
ʻAe, hiki ke ʻike ʻia kēia ma nā ʻano nui ʻelua.
1. Lissencephaly i hoʻokaʻawale ʻia: Maanei, ʻo Lissencephaly wale nō ka maʻi o ke keiki. ʻAʻohe pilina me kekahi maʻi olakino ʻē aʻe.
2. Pili pū me nā maʻi ʻē aʻe: I kekahi manawa hiki ke hana ʻia kēia ma ke ʻano he ʻāpana o kahi maʻi genetic ʻē aʻe.
E nānā kākou i kekahi o nā syndromes nui ma ka papa ma lalo nei.
| Inoa o ka maʻi | Nā hiʻohiʻona maʻamau i ʻike ʻia |
|---|---|
| ʻO ka maʻi Miller-Dieker | Lae nui, ʻauwae liʻiliʻi, a me nā loli ʻē aʻe o ka helehelena. Ulu lohi a me nā pilikia hanu. |
| ʻO ka maʻi Norman-Roberts | ʻIke mamao, nā hopu ʻana, a me ka hemahema o ka noʻonoʻo. |
| ʻO ka maʻi Walker-Warburg | Ka nāwaliwali nui o nā ʻiʻo a me ka nawaliwali. |
He aha nā kumu o ka lissencephaly?
He maʻi laha ʻole kēia, e kū ana ma kahi o hoʻokahi i loko o 100,000 mau hānau ʻana.
Ua ʻike nā kānaka noiʻi ʻo ke kumu nui o kēia he kīnā i kekahi mau genes . Akā ʻo ka mea nui e hoʻomaopopo ma ʻaneʻi, ʻo ka hapa nui o kēia mau kīnā genetic ʻaʻole i hoʻoilina ʻia mai nā mākua a i nā keiki . ʻO ke ʻano kēia, ʻaʻohe mea o ka ʻohana i loaʻa i kēia maʻi ma mua. He mau loli paha kēia e kū nei ma ke ʻano genetic o ke keiki.
I kekahi manawa, ʻaʻohe o nā genes i ʻike ʻia a hiki i kēia manawa i nā keiki me kēia maʻi. ʻO ke ʻano kēia, hiki ke kumu ʻia ke ʻano e nā kumu genetic ʻē aʻe i ʻike ʻole ʻia e nā mea noiʻi, a i ʻole e nā kumu ʻē aʻe i ʻike ʻole ʻia.
Eia kekahi, ua hōʻike kekahi mau noiʻi:
- ʻO kekahi mau maʻi e kū mai ana i ka makuahine i ka wā hāpai (nā maʻi ʻōpū).
- Ua loaʻa i kahi pēpē i loko o ka ʻōpū kahi hahau .
ʻO nā ʻano mea like paha ke kumu o kēia.
He aha nā hōʻailona o kēia maʻi?
ʻOkoʻa loa ke koʻikoʻi a me nā hōʻailona o ka lissencephaly mai ke keiki a ke keiki.
Ma muli o ka hemahema o ka ulu ʻana o ka lolo , ʻo kahi hōʻailona nui e ʻike ʻia i ka wā hānau a i ʻole ma hope koke iho he poʻo liʻiliʻi ʻē aʻe (microcephaly) .
ʻO nā hiʻohiʻona ʻē aʻe:
- Paʻakikī ke ale ʻana
- Nā ʻūmiʻi ʻiʻo
- Nā pilikia koʻikoʻi noʻonoʻo a me ke kino a me nā lohi o ka ulu ʻana.
ʻAʻole paha e hiki i kekahi mau keiki ke noho, kū, hele, a ʻōwili paha. Hiki ke nāwaliwali ko lākou mau ʻiʻo. Hiki ke loaʻa iā lākou nā lima, nā manamana lima, a i ʻole nā manamana wāwae kīnā.
Eia nō naʻe, aia kekahi ʻaoʻao o kēia. Aia kekahi mau hihia kahi e ulu maʻamau ai kekahi mau keiki a hōʻike i nā pilikia aʻo liʻiliʻi loa. No laila, ʻaʻole maikaʻi ke manaʻo he like nā keiki a pau.
Nā mea e pono ai ʻoe e ʻike e pili ana i nā seizure
Ma kahi o 8 o 10 mau keiki me kēia ʻano e loaʻa ai kahi ʻano kūikawā o ka ʻeha i kapa ʻia ʻo infantile spasms . He ʻano weliweli loa kēia.
Ke kū mai kēia ʻano kūpono , ʻaʻole ia e like me kahi kūpono nui e like me kā mākou e noʻonoʻo mau ai. Akā, hiki i ke pēpē ke neʻe wale, e ʻūlū ana me he mea lā e ʻeha ana ka ʻōpū, a i ʻole e makaʻu paha . Hiki i kekahi mau mākua ke kuhihewa i kēia no ka colic a i ʻole reflux.
ʻO ka mea nui, ʻoi aku ka koʻikoʻi o kēia mau ʻūmiʻi pēpē ma mua o ka maʻamau. Hiki iā lākou ke hōʻino i ka lolo a hoʻopaʻa hou i ka ulu ʻana o ke keiki. No laila, inā ʻike ʻoe i kēlā mau hōʻailona , he mea nui e ʻimi koke i ke kōkua lapaʻau.
Eia kekahi, ma kahi o 9 o 10 mau keiki me ka lissencephaly e loaʻa i ka maʻi epilepsy , kahi ʻano i hōʻike ʻia e nā hoʻopā lōʻihi, i loko o ka makahiki mua o ke ola.
Pehea e ʻike ai i kēia maʻi?
Hoʻohana nui nā kauka i nā scan lolo e ʻike ai i kēia maʻi.
- Nānā CT
- Nānā MRI
Hōʻike maopopo kēia mau scan i ke ʻano laumania o ka ʻili o ka lolo.
Ke hōʻoia ʻia ka hōʻailona, hana ʻia kekahi manawa ka hoʻāʻo genetic e hoʻāʻo e ʻike i ke ʻano o ke kīnā genetic i hoʻokumu ai.
Pehea ke ʻano o ka mālama ʻana a me ka hoʻokele ʻana?
E like me kā mākou i ʻōlelo ai ma mua, ʻaʻohe lāʻau lapaʻau no kēia maʻi. Akā hiki iā ʻoe ke kāohi i nā hōʻailona o kāu keiki, e maʻalahi i ke ola o kēlā me kēia lā, a hāʻawi i kāu keiki i kahi ola maikaʻi. Hana pū nā kauka a me nā mākua e kālele i kēia mau mea.
- Hoʻōla kino, hoʻōla hana, a me ka hoʻōla ʻōlelo: Kōkua kēia i ka hoʻoikaika ʻana i nā ʻiʻo o ke keiki, hoʻomaʻamaʻa iā lākou e hana i nā hana o kēlā me kēia lā, a hoʻomohala i nā mākau kamaʻilio.
- Nā lāʻau lapaʻau e kāohi ai i ke kūpono:Inā loaʻa i ke keiki ka ʻōhū, he mea nui e hoʻomau i ka hāʻawi ʻana i ka lāʻau lapaʻau i kauoha ʻia e ke kauka e kaohi ai.
- Nā mea kōkua: Hiki i ke keiki ke hoʻohana i nā noho huila a i ʻole nā noho kūikawā e hiki ai iā lākou ke noho pololei.
- Ka Hānai ʻana: ʻO nā keiki i pilikia i ka moni ʻana, pono paha e hoʻokomo ʻia kahi ʻōmole hānai ma ka ihu a i ʻole ka ʻōpū e hāʻawi pololei i ka meaʻai i ka ʻōpū.
ʻO ka pilikia i ka hanu ʻana a me ke ale ʻana, a me nā kūlou hiki ʻole ke kaohi ʻia, ʻo ia nā pilikia nui e hoʻoweliweli ana i ke ola i nā keiki me kēia maʻi.
Akā ma ke ʻano he makua, ʻo ka mea nui e pono ai ʻoe e hoʻomanaʻo, he ʻokoʻa kēlā me kēia keiki . ʻOiai ʻaʻole ola kekahi mau keiki a hiki i ka 10 mau makahiki, ulu maikaʻi kekahi a lilo i mau mākua. No laila, he mea nui loa ke ʻike ʻana i kahi loea e aʻo hou e pili ana i ke kūlana o kāu keiki a me nā lawelawe kākoʻo i loaʻa.
Leka Lawe-Home
- He maʻi laha ʻole ka Lissencephaly i ka wā e hana pono ʻole ai ka lolo o ke pēpē i ka wā hāpai.
- ʻOkoʻa loa nā hōʻailona mai kekahi keiki a i kekahi keiki. ʻOiai paha he mau hopena iki kekahi, hiki i kekahi ke loaʻa nā pilikia kino a me ka noʻonoʻo koʻikoʻi.
- E makaʻala loa i nā ʻūmiʻi pēpē , kahi ʻano kūpono kahi e ʻoni wale ai ka pēpē a makaʻu. Inā ʻike ʻoe i kēia, e ʻike koke i ke kauka.
- ʻOiai ʻaʻohe lāʻau lapaʻau kūikawā no kēia, hiki i ka hoʻōla kino, ka lāʻau lapaʻau, a me nā mālama kākoʻo ʻē aʻe ke kōkua i ke keiki e ola i kahi ola maikaʻi aʻe.
- He ʻokoʻa ka huakaʻi a kēlā me kēia keiki, no laila he mea nui e ʻimi i ke alakaʻi a ke kauka pediatric no ka ʻōlelo aʻo pololei loa no kāu keiki, ma mua o ka hoʻohālikelike ʻana iā lākou me nā poʻe ʻē aʻe.
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