Skip to main content

He "pale" anei ka lolo o kāu pēpē? E kamaʻilio kākou e pili ana iā Lissencephaly!

He "pale" anei ka lolo o kāu pēpē? E kamaʻilio kākou e pili ana iā Lissencephaly!

Ua lohe paha ʻoe i kahi pēpē i hānau ʻia me ka "lolo laumania"? Ua makaʻu iki paha ʻoe i kou lohe ʻana i kēia mau ʻōlelo. I kēia lā, e kamaʻilio maʻalahi kākou e pili ana i ke ʻano o kēia maʻi i kapa ʻia ʻo 'Lissencephaly', no ke aha e hana ai, a pehea e pili ai i ka pēpē. ʻOiai he kumuhana paʻakikī kēia, e wehewehe wau iā ia ma ke ʻano e hiki ai iā ʻoe ke hoʻomaopopo.

He aha ka Lissencephaly?

I ka ʻōlelo maʻalahi, ʻo ke ʻano o "Lissencephaly" he "lolo laumania." He maʻi lolo koʻikoʻi a laha ʻole kēia. Hoʻomaka ia i ka wā e noho ana ke pēpē i loko o ka ʻōpū.

E noʻonoʻo, ua like ko kākou lolo me ka walnut, ʻeā? He nui kona mau pelu (gyri) a me nā ʻauwaha (sulci). He mea nui loa kēia mau pelu a me nā ʻauwaha. Hoʻokaʻawale lākou i nā ʻāpana like ʻole o ka lolo, a hoʻonui lākou i ka ʻili o ka lolo, kahi e kōkua ai iā mākou e hoʻomohala i ko mākou akamai a me ka hiki ke noʻonoʻo.

I kēia manawa, i loko o kahi pēpē me ka `Lissencephaly`, ʻaʻole ulu pono kēia mau `gyri` a me `sulci` i loko o ka lolo. A laila nānā aku ka lolo i ka laumania loa. E like me ka papa laumania. ʻO ia ke kumu i kapa ʻia ai he "lolo laumania" .

Hiki ke loaʻa ʻo Lissencephaly i nā ʻano he nui. Aia ma mua o 20 mau ʻano nui. Akā ʻo ka hapa nui o kēia mau mea ua māhele ʻia i ʻelua mau māhele nui:

  • ʻO ka lissencephaly maʻamau (ʻAno 1)
  • ʻO ka lissencephaly Cobblestone (ʻAno 2 )

ʻOiai ke ʻano like o nā hōʻailona o nā hui ʻelua, ʻokoʻa paha nā hoʻololi genetic e kumu ai lākou.

I kekahi manawa, ʻike wale ʻia ka `Lissencephaly`, ʻo ia hoʻi, me ka ʻole o nā hōʻailona ʻē aʻe. Kāhea mākou i kēia ʻo `isolated lissencephaly`. I kekahi manawa, hiki ke ʻike pū ʻia me nā maʻi ʻē aʻe (`syndromes`) e like me `Miller-Dieker syndrome` a i ʻole `Walker-Warburg syndrome`.

Loaʻa pinepine i nā keiki me ka lissencephaly nā lohi nui o ka ulu ʻana a me nā kīnā noʻonoʻo . Eia nō naʻe, ʻokoʻa kēia mai kekahi keiki a i kekahi keiki, ma muli o ke koʻikoʻi o ke kūlana.

ʻO wai ka mea e loaʻa ana iā Lissencephaly? Pehea ka maʻamau?

Hoʻopilikia ka Lissencephaly i nā ʻōpū e ulu ana . Hoʻomohala pinepine ia ma waena o 12 a me 24 mau pule o ka hāpai ʻana. Hoʻokumu pinepine ʻia ia e nā hoʻololi genetic. Eia nō naʻe, hiki ke hana ʻia e nā kumu ʻaʻole genetic.

He maʻi laha ʻole kēia. Wahi a nā kānaka noiʻi, hoʻokahi wale nō i loko o 100,000 mau pēpē i hānau ʻia me Lissencephaly. No laila, mai hopohopo i kēia, akā he mea pono ke makaʻala.

He aha nā hōʻailona e hōʻike ai kahi pēpē me ka 'Lissencephaly'?

ʻOkoʻa loa nā hōʻailona o ka lissencephaly. Aia wale nō ia i ke koʻikoʻi o ke ʻano a inā pili ia me nā kūlana olakino ʻē aʻe. Hiki i kekahi mau keiki ke ulu maʻamau me nā pilikia aʻo liʻiliʻi wale nō. ʻOiai ʻo kekahi poʻe he mau hōʻailona koʻikoʻi loa. ʻOkoʻa loa nō hoʻi ke koʻikoʻi o kēia mau hōʻailona.

No laila, he mea nui loa e kamaʻilio me kāu kauka e pili ana i ka mea e manaʻo ai ma muli o ke ʻano o ka lissencephaly i loaʻa i kāu keiki.

ʻO kekahi o nā hōʻailona o ka 'Lissencephaly':

  • Nā hopu ʻana: ʻEiwa o loko o nā keiki he ʻumi me ka lissencephaly e loaʻa i ka maʻi epilepsy i loko o ka makahiki mua o ke ola. ʻO kēia ka hōʻailona maʻamau.
  • Paʻakikī i ka moni ʻana (dysphagia) a me ka ʻai ʻana: Paʻakikī paha i ka pēpē ke omo a moni i ka meaʻai.
  • Nā lohi o ka ulu ʻana: ʻAʻole paha e ulu ka pēpē e like me ka mea i manaʻo ʻia no ko lākou mau makahiki. Hiki ke lohi nā mea e like me ka minoʻaka, ke hāpai ʻana i ko lākou poʻo i luna, ka ʻōwili ʻana, a me ka noho ʻana i luna.
  • Nā kīnā noʻonoʻo a me nā ʻokoʻa aʻo ʻana: Hiki ke hoʻopilikia ʻia ka ulu ʻana o ka noʻonoʻo.
  • Nā ʻūmiʻi ʻiʻo: Hiki ke loaʻa nā ʻūmiʻi ʻiʻo a me ka ʻūmiʻi.
  • Nā pilikia me nā hana psychomotor: Aia paha nā pilikia me ka hoʻonohonoho lima-maka, ka hele wāwae, a me ka hopu ʻana i nā mea.
  • ʻAʻole e ulu pono: Lohi loa paha ka ulu ʻana o ke kino o ka pēpē. ʻAʻole paha lākou e piʻi i ke kaumaha a hiki ke noho wiwi.
  • He poʻo liʻiliʻi ma mua o ka maʻamau (microcephaly): ʻOi aku ka liʻiliʻi o ke poʻo ma mua o ka maʻamau no ka makahiki.
  • Nā ʻokoʻa o nā lālā hānau: Hiki ke hānau ʻia ʻoe me kekahi mau ʻokoʻa ma nā lima, nā manamana lima, a me nā manamana wāwae.

No ke aha e kū mai ai ʻo 'Lissencephaly'? He aha nā kumu?

Hiki ke hana ʻia ʻo Lissencephaly e nā kumu genetic a me nā kumu non-genetic. Hoʻomohala pinepine ia i loko o ka ʻōpū, ma waena o 12 a me 24 mau pule o ka hāpai ʻana.

I ka ʻōlelo maʻalahi, ʻo kēia mau kumu ma muli o ka neʻe ʻana o nā neuronal o ka ʻaoʻao waho o ka lolo o ka pēpē (nā neuronal cells). E noʻonoʻo e pili ana i ia mea, ʻo ka ʻāpana o ko kākou lolo e kuleana no ka neʻe ʻana a me ka noʻonoʻo ʻana ua kapa ʻia ʻo ka cerebral cortex. Loaʻa iā ia nā pelu hohonu (gyri) a me nā grooves (sulci), ʻeā?

I ka ulu ʻana o ka lolo o ka pēpē i loko o ka ʻōpū, hoʻokumu ʻia nā ʻāpana hou, a ma hope aku e lilo i mau ʻāpana aʻalolo kūikawā a neʻe i ka ʻili o ka lolo o ka pēpē. Ua kapa ʻia kēia ʻo 'neuronal migration'. Ma kēia ʻano, hoʻokumu ʻia kekahi mau papa o nā ʻāpana. Hoʻokumu kēia mau papa i nā 'gyri' (nā pelu).

Akā i ke ʻano o ka 'Lissencephaly', ʻaʻole hele kēia mau pūnaewele i kahi e pono ai lākou e hele. A laila, ʻaʻole lawa nā papa o nā pūnaewele i ka 'cerebral cortex' o ke pēpē. Ma muli o kēia, ua nalowale a i ʻole ua ulu ʻole kēlā mau 'gyri' (nā pelu).

Nā kumu ʻole genetic

ʻOiai he mea kakaikahi, hiki i nā kumu non-genetic ke kōkua i ka lissencephaly.

  • Nā maʻi viral i ka makuahine hāpai a i ʻole ke pēpē i hānau ʻole ʻia: ʻO kekahi mau maʻi viral, ʻoi aku hoʻi i nā mahina ʻekolu mua o ka hāpai ʻana (mai ka pule mua a hiki i ka pule ʻumikūmālua), hiki ke hoʻopilikia i ka ʻōpū.
  • Hoʻemi ʻia ke koko i hoʻolako ʻia me ka oxygen i ka lolo o ka pēpē (ischemia): Hiki ke hana ʻia kēia ʻano inā emi ka nui o ka oxygen i loaʻa i ka lolo i ka wā e ulu ana ka pēpē i loko o ka ʻōpū.

Nā kumu hoʻoilina

ʻO ka Lissencephaly ka mea i hoʻokumu pinepine ʻia e nā hoʻololi genetic . ʻO ka hoʻololi genetic kahi hoʻololi i ke kaʻina o kā mākou DNA. ʻIke ʻoe, ʻo kā mākou kaʻina DNA ka mea e hāʻawi i kā mākou mau cell i ka ʻike e pono ai lākou e hana i kā lākou mau hana. No laila, inā ʻaʻole piha a hōʻino ʻia paha kekahi hapa o kēia kaʻina DNA, hiki ke loaʻa nā hōʻailona o kahi kūlana genetic.

Hiki i kahi pēpē ke hoʻoilina i kēia loli hoʻoilina mai kekahi a i ʻole nā ​​mākua ʻelua. Aia ia i ke ʻano o ka hoʻoilina ʻana i ka loli hoʻoilina. Akā i kekahi manawa hiki i kēia mau loli hoʻoilina ke hana 'ma ke ʻano ulia pōpilikia', me ka ʻole o kekahi o ka ʻohana i loaʻa i kēia maʻi ma mua.

Ua ʻike nā kānaka ʻepekema i kekahi mau genes e hiki ke hana i ka lissencephaly. ʻO kekahi o lākou:

  • ʻO ka gene `LIS1` (`PAFAH1B1`): ʻO kahi loli (`mutation`) a i ʻole ka nalowale ʻana o kahi ʻāpana (`deletion`) o kēia gene e pili ana me ka `isolated lissencephaly` a me ka `Miller-Dieker syndrome`.
  • ʻO ka gene `DCX`: He gene kēia ma ka chromosome `X`. E like me kou ʻike, hoʻokahi chromosome `X` a hoʻokahi chromosome `Y` ko nā kāne. No laila, ʻoi aku ka nui o ka loaʻa ʻana o ka `Lissencephaly` i nā pēpē kāne ma muli o kēia hoʻololi ʻana o ka genetic. ʻOiai ʻo ka maʻamau he ʻelua chromosome `X` ko nā pēpē wahine, ʻoiai inā loaʻa iā lākou kēia maʻi, ʻaʻole pinepine ka ʻino o nā hōʻailona.
  • ʻO ka gene `ARX`: Loaʻa i nā pēpē me kahi mutation i loko o kēia gene ka `Lissencephaly` me nā hōʻailona ʻē aʻe. No ka laʻana, ka nele o nā ʻāpana o ka lolo (`agenesis of the corpus callosum`), nā ʻano ʻē o nā genitals, a me ka maʻi epilepsy koʻikoʻi. Aia pū ka gene `ARX` ma ka chromosome `X`. No laila, ʻo nā pēpē kāne ka mea i hoʻopilikia pinepine ʻia.
  • ʻO ka gene 'RELN': ʻO kahi mutation i loko o kēia gene ke kumu o kahi maʻi i kapa ʻia ʻo 'Norman-Roberts syndrome', ʻo ia hoʻi ʻo 'Lissencephaly'.

Pehea e ʻike ʻia ai ka Lissencephaly?

I kekahi manawa, kānalua paha nā kauka i ka lissencephaly i ka wā hāpai inā ua loaʻa i kekahi o ka ʻohana ke ʻano ma mua, a inā paha e hopohopo ka nānā ʻana o ka ultrasound i ka wā hāpai. I kēlā hihia, hiki ke ʻike ʻia ma o nā hoʻokolohua kūikawā i ka wā hāpai, e like me ka amniocentesis, a me ka nānā ʻana o ka fetal magnetic resonance imaging (MRI) o ka lolo o ka pēpē.

A i ʻole, ʻike pinepine nā kauka i ka 'Lissencephaly' ma hope o ka hānau ʻana o ke pēpē, ma o ka hoʻokolokolo kino ʻana o ke pēpē a me nā 'hoʻāʻo kiʻi' o ke poʻo.

Me kēia mau hoʻokolohua kiʻi, nānā nā kauka e ʻike inā ʻaʻohe nā `sulci` (nā grooves) a me nā `gyri` (nā pelu) ma ka ʻili o ka lolo o ke pēpē a i ʻole ua emi iho, a inā ua mānoanoa ka `cerebral cortex` (cerebral cortex).

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka `Lissencephaly`?

Inā kānalua kāu kauka i ka lissencephaly, ma muli o kou mōʻaukala ʻohana a i ʻole nā ​​​​hopena o kahi scan ultrasound i ka wā hāpai, hiki iā ia ke paipai i kekahi mau hoʻokolohua kūikawā i ka wā hāpai. ʻO kēia mau mea:

  • Hoʻāʻo DNA fetal ʻole-kelepona: Pili kēia i ka hoʻokaʻawale ʻana i ka DNA o ka makuahine a me ke keiki i loko o ka ʻōpū mai kahi hāpana o ke koko o ka makuahine. A laila hoʻāʻo ʻia kēia DNA ma kahi keʻena hoʻokolohua e ʻike ai inā he kiʻekiʻe aʻe ka manawa o kekahi pilikia chromosome.
  • ʻAmniocentesis: He hoʻāʻo kēia e hana pinepine ʻia i ka wā o ka trimester ʻelua a ʻekolu paha o ka hāpai ʻana. Ma kēia hoʻāʻo, hoʻohana ke kauka i kahi nila lahilahi e wehe i kahi liʻiliʻi o ka wai amniotic mai ka ʻeke amniotic e hoʻopuni ana i ka pēpē. A laila hoʻāʻo ʻia kēia hāpana wai i loko o kahi keʻena hoʻokolohua. Hiki i ka Amniocentesis ke ʻike i nā kūlana genetic a me nā mutations e hoʻoulu ai i nā kūlana e like me lissencephaly.
  • ʻO ka laʻana ʻana o ka villi Chorionic (CVS): Ma kēia hoʻāʻo, lawe ke kauka i kahi laʻana o ka ʻiʻo i kapa ʻia ʻo chorionic villi mai kou placenta. Hiki ke lawe ʻia kēia laʻana ma o ka cervix (transcervical) a i ʻole ma o ka paia ʻōpū (transabdominal). ʻO nā villi Chorionic he mau ʻōpuʻu liʻiliʻi e like me nā manamana lima ma ka placenta. Aia i loko o lākou nā mea genetic ponoʻī o ka pēpē. Hiki i kēia hoʻāʻo CVS ke ʻike inā he maʻi chromosomal ka pēpē a i ʻole kekahi maʻi genetic ʻē aʻe.

Hoʻohana nā kauka i nā hoʻokolohua kiʻi e like me kēia e ʻike ai i ka lissencephaly ma hope o ka hānau ʻana o kahi pēpē:

  • ʻO ke ultrasound poʻo: ʻO ka ultrasound kahi hoʻāʻo kiʻi non-invasive e hoʻohana ana i nā nalu kani alapine kiʻekiʻe e hana i nā kiʻi manawa maoli a i ʻole nā ​​​​wikiō o nā ʻōpū o loko, e like me ka lolo.
  • ʻO ke kiʻikuhi i helu ʻia ke poʻo (CT scan):He hoʻāʻo ka CT scan e hoʻohana ana i kahi kamepiula a me nā kukuna X e hana i nā kiʻi ʻekolu-dimensional (3D) o ka ʻāpana o ke kino e nānā ʻia ana, ma kēia hihia ke poʻo a me ka lolo o kāu keiki.
  • ʻO ke kiʻi ʻana o ka lolo me ka magnetic resonance imaging (MRI): He hoʻāʻo ʻeha ʻole ka MRI scan e hoʻopuka ana i nā kiʻi maopopo loa o nā ʻano a me nā ʻiʻo i loko o ka lolo o kāu keiki. Hoʻohana ka MRI i kahi magnet nui, nā nalu lekiō, a me kahi kamepiula e hana i kēia mau kiʻi kikoʻī. ʻAʻole ia e hoʻohana i nā kukuna X.

Hiki i kāu kauka ke kauoha i kahi hoʻāʻo EEG (Electroencephalogram) no kāu pēpē. Ana a hoʻopaʻa kahi EEG i nā hōʻailona uila i loko o ka lolo o kāu pēpē. I ka wā o kahi EEG, kau kahi loea i nā papa metala liʻiliʻi (electrodes) ma ke poʻo o kāu pēpē. Hoʻopili ʻia kēia mau electrodes i kahi mīkini e hāʻawi i ke kauka i ka ʻike e pili ana i ka hana lolo o kāu pēpē.

No ka hōʻoia ʻana i ka hōʻailona, ​​​​hoʻohana nā kauka i nā haʻawina DNA, e like me ka nānā ʻana o ka chromosomal a me ka nānā ʻana i ka hoʻololi ʻana o ka gene, e ʻike i ka loli genetic i kuleana no ka lissencephaly.

Pehea e mālama ʻia ai ʻo Lissencephaly?

ʻO ka ʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau a lāʻau lapaʻau paha no ka lissencephaly i kēia manawa . Akā, mālama nā kauka i nā hōʻailona kikoʻī o kēlā me kēia keiki me ka lissencephaly.

Pono paha kēia mau lāʻau lapaʻau i nā hana i hoʻonohonoho ʻia o kahi hui o nā loea like ʻole, e like me:

  • Nā Kauka Lapaʻau Keiki
  • Nā kauka lolo
  • Nā Gastroenterologists (nā loea i ka ʻōnaehana hoʻoheheʻe)
  • Nā mea lapaʻau meaʻai
  • Nā mea lapaʻau hanu
  • Nā mea hoʻōla hana a me nā mea hoʻōla kino

Hiki ke hoʻokomo ʻia nā kānaka e like me ia.

Nā lāʻau lapaʻau maʻamau:

  • Nā ʻano hana e maʻalahi ai i nā keiki me nā pilikia ʻai ke loaʻa nā meaola: no ka laʻana, ka hānai ʻana ma o kahi paipu i loko o ka ʻōpū (`gastrostomy tube' - G-tube') a/a i ʻole ka ʻōlelo a me ka moni ʻana (`speech and swallowing therapy').
  • Nā lāʻau lapaʻau anti-seizure: Nā lāʻau lapaʻau i hāʻawi ʻia e kāohi i nā seizure.
  • ʻO ka lāʻau lapaʻau hana a me ke kino e kōkua i ka ulu ʻana o ke kino a me ka hoʻoikaika ʻana i nā ʻiʻo: Nā mea e like me nā hoʻomaʻamaʻa e kōkua ai i ka ikaika o ke kino a me ka neʻe ʻana.
  • Ke kau ʻana i kahi ventriculoperitoneal (VP) shunt e kāohi i ka hydrocephalus: He hana ʻoki liʻiliʻi e hōʻemi i ka hōʻiliʻili ʻana o ka wai keu i loko o ka lolo.

Inā loaʻa i kāu keiki ka lissencephaly, e ʻōlelo paha kāu kauka i ke aʻo ʻana i nā genetics.Kuhikuhi i.

He aha ka wānana no kahi keiki me ka lissencephaly?

ʻOkoʻa loa ka nānā ʻana no kahi keiki me ka lissencephaly ma muli o ke koʻikoʻi o ke kūlana a inā pili ia me nā kūlana olakino ʻē aʻe . Hiki i nā keiki he nui me ka lissencephaly ke noho i ko lākou mau pae ulu mua. ʻO ke ʻano kēia, ʻaʻole hiki iā lākou ke hana i nā mea he nui ma o lākou iho.

Eia nō naʻe, hiki i kekahi mau keiki ke ulu maʻamau me nā ʻokoʻa liʻiliʻi o ke aʻo ʻana, no laila mai hoʻopau i ka manaʻolana.

Hiki i nā lāʻau lapaʻau mua a hoʻomau ke kōkua nui i kekahi mau keiki. ʻO kēia mau lāʻau lapaʻau:

  • Hoʻōla kino
  • Hoʻōla hana
  • Hoʻōla ʻōlelo
  • Hoʻōla ʻike maka

Hiki ke hoʻokomo ʻia nā mea e like me kēia.

Pono nā keiki he nui me ka lissencephaly e lawe i nā lāʻau lapaʻau i kēlā me kēia lā e pale aku i ka maʻi epilepsy a mālama i nā pilikia ʻē aʻe.

He aha ke kūlana o ke ola o kahi keiki me ka lissencephaly?

He pōkole ke ola maʻamau o kahi keiki me ka lissencephaly. Make ka hapa nui o nā keiki ma mua o 10 mau makahiki. ʻO nā kumu nui o ka make i waena o ka poʻe me ka lissencephaly ʻo ka hanu ʻana a me nā maʻi hanu .

He aha kaʻu e manaʻo ai inā loaʻa i kaʻu keiki ʻo 'Lissencephaly'? / Pehea e mālama ai i kaʻu pēpē?

ʻO ka mea nui e hoʻomanaʻo ai, ʻaʻohe keiki ʻelua me ka lissencephaly e hoʻopilikia like ʻia. ʻAʻohe mea hiki ke wānana pololei pehea e hoʻopilikia ʻia ai kāu keiki. ʻO ka mea maikaʻi loa āu e hana ai e hoʻomākaukau ai no ka wā e hiki mai ana, ʻo ia ke kamaʻilio me nā kauka loea i ka noiʻi ʻana a me ka mālama ʻana i ka lissencephaly.

No ke kōkua ʻana i ka mālama ʻana i kāu keiki me ka lissencephaly, e hahai pono i nā ʻōlelo a ke kauka:

  • E hāʻawi i nā lāʻau lapaʻau a pau e like me ke kauoha.
  • E hana pololei i nā loiloi hoʻomohala a me nā therapies.
  • E hōʻoia e hele i nā kipa lapaʻau a pau.

Hiki i ka Lissencephaly ke hoʻoulu i nā pilikia noʻonoʻo, neurologic, a/a i ʻole psychomotor. He nui nā keiki me ka lissencephaly e lohi ana i ka ulu ʻana a pono paha ke kōkua me nā hana o kēlā me kēia lā i ko lākou ola.

Hiki i ke kime lapaʻau o kāu keiki ke pane i kāu mau nīnau a hāʻawi iā ʻoe i ke kākoʻo. Hiki paha iā lākou ke haʻi iā ʻoe e pili ana i kahi hui kākoʻo i loaʻa ma kou wahi a i ʻole ma ka pūnaewele.

Hiki ke pale ʻia ka Lissencephaly?

ʻO ka mea pōʻino, ʻaʻole hiki ke pale ʻia ka hapa nui o nā hihia o ka lissencephaly. Inā ʻoe e hoʻolālā ana e loaʻa kahi keiki,E kamaʻilio me kāu kauka e pili ana i ka hoʻāʻo ʻana i ka genetic. E kōkua kēia iā ʻoe e hoʻomaopopo i ka pilikia o kāu keiki e loaʻa i kahi maʻi genetic e like me ka lissencephaly a i ʻole kahi maʻi i hiki ke hana ʻia e kahi hoʻololi genetic i hoʻoilina ʻia.

Āhea wau e ʻike ai i ke kauka e pili ana i ka `Lissencephaly`?

Inā ua ʻike ʻia kāu keiki me ka lissencephaly, pono lākou e hālāwai pinepine me kā lākou hui lapaʻau e ʻike inā e hana pono ana kā lākou lāʻau lapaʻau a pehea hoʻi e holomua nei ko lākou ulu ʻana.

Hiki ke paʻakikī ka hoʻomaopopo ʻana i ka maʻi Lissencephaly o kāu keiki. E hāʻawi kāu hui lapaʻau iā ʻoe i kahi hoʻolālā lapaʻau paʻa e pili pono ana i nā hōʻailona o kāu keiki. ʻO ka mea nui loa, ʻo ia ka hōʻoia ʻana e loaʻa ana i kāu keiki ke aloha a me ke kākoʻo e pono ai lākou i ko lākou ola a pau, a e makaʻala i nā hōʻailona hou e kū mai ana.

He aha ka leka a mākou e makemake ai e lawe i ka home mai kēia moʻolelo?

He kūlana kakaikahi a paʻakikī hoʻi ʻo Lissencephaly e kū mai ana i ka wā o ka ulu ʻana o ka lolo o kahi pēpē. Ma kēia kūlana, ʻaʻole i hana pono ʻia nā pelu a me nā ʻauwaha maʻamau (gyri a me sulci) i loko o ka lolo, e hopena ana i kahi ʻano "laumania".

  • Hiki ke kumu ʻia kēia e nā kumu genetic, a me, i kakaikahi, nā kumu ʻaʻole genetic .
  • Hiki ke ʻokoʻa loa nā hōʻailona mai kekahi keiki a i kekahi. He mea maʻamau ka maʻi ʻepilepsy, ka lohi o ka ulu ʻana, a me nā pilikia hānai.
  • ʻOiai ʻaʻohe lāʻau lapaʻau piha no kēia, aia nā ʻano lāʻau like ʻole e kāohi ai i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki .
  • ʻO ka mea nui loa, ʻo ia ka ʻike ʻana i ka wā mua loa, e hana e like me ka ʻōlelo aʻo a nā kauka, a hāʻawi i ke keiki i ke aloha a me ke kākoʻo e pono ai lākou .
  • Inā he mau nīnau hou aku kāu e pili ana i kēia, mai makaʻu e kamaʻilio me kāu kauka. Hiki nō hoʻi ke lilo i mea kōkua nui ke hui pū me nā mākua ʻē aʻe o nā keiki e like me kēia a kaʻana like i nā ʻike.

E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Aia nā kauka, nā mea hoʻōla, a me nā mea ʻē aʻe he nui e hiki ke kōkua iā ʻoe ma kēia huakaʻi.


ʻO Lissencephaly, lolo palupalu, nā ʻano hewa o ka lolo, ka ulu ʻana o ka fetal, nā hoʻololi genetic, ka lohi o ka ulu ʻana, ka maʻi epilepsy

Frequently Asked Questions (FAQ)

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka `Lissencephaly`?

Inā kānalua kāu kauka i ka lissencephaly, ma muli o kou mōʻaukala ʻohana a i ʻole nā ​​​​hopena o kahi scan ultrasound i ka wā hāpai, hiki iā ia ke paipai i kekahi mau hoʻokolohua kūikawā i ka wā hāpai. ʻO kēia mau mea:

⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

💬 Comments (0)

ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.

Hoʻohui i kāu manaʻo

E ʻoluʻolu e helu: 5 + 1 =
He "pale" anei ka lolo o kāu pēpē? E kamaʻilio kākou e pili ana iā Lissencephaly!

He "pale" anei ka lolo o kāu pēpē? E kamaʻilio kākou e pili ana iā Lissencephaly!

Ua lohe paha ʻoe i kahi pēpē i hānau ʻia me ka "lolo laumania"? Ua makaʻu iki paha ʻoe i kou lohe ʻana i kēia mau ʻōlelo. I kēia lā, e kamaʻilio maʻalahi kākou e pili ana i ke ʻano o kēia maʻi i kapa ʻia ʻo 'Lissencephaly', no ke aha e hana ai, a pehea e pili ai i ka pēpē. ʻOiai he kumuhana paʻakikī kēia, e wehewehe wau iā ia ma ke ʻano e hiki ai iā ʻoe ke hoʻomaopopo.

He aha ka Lissencephaly?

I ka ʻōlelo maʻalahi, ʻo ke ʻano o "Lissencephaly" he "lolo laumania." He maʻi lolo koʻikoʻi a laha ʻole kēia. Hoʻomaka ia i ka wā e noho ana ke pēpē i loko o ka ʻōpū.

E noʻonoʻo, ua like ko kākou lolo me ka walnut, ʻeā? He nui kona mau pelu (gyri) a me nā ʻauwaha (sulci). He mea nui loa kēia mau pelu a me nā ʻauwaha. Hoʻokaʻawale lākou i nā ʻāpana like ʻole o ka lolo, a hoʻonui lākou i ka ʻili o ka lolo, kahi e kōkua ai iā mākou e hoʻomohala i ko mākou akamai a me ka hiki ke noʻonoʻo.

I kēia manawa, i loko o kahi pēpē me ka `Lissencephaly`, ʻaʻole ulu pono kēia mau `gyri` a me `sulci` i loko o ka lolo. A laila nānā aku ka lolo i ka laumania loa. E like me ka papa laumania. ʻO ia ke kumu i kapa ʻia ai he "lolo laumania" .

Hiki ke loaʻa ʻo Lissencephaly i nā ʻano he nui. Aia ma mua o 20 mau ʻano nui. Akā ʻo ka hapa nui o kēia mau mea ua māhele ʻia i ʻelua mau māhele nui:

  • ʻO ka lissencephaly maʻamau (ʻAno 1)
  • ʻO ka lissencephaly Cobblestone (ʻAno 2 )

ʻOiai ke ʻano like o nā hōʻailona o nā hui ʻelua, ʻokoʻa paha nā hoʻololi genetic e kumu ai lākou.

I kekahi manawa, ʻike wale ʻia ka `Lissencephaly`, ʻo ia hoʻi, me ka ʻole o nā hōʻailona ʻē aʻe. Kāhea mākou i kēia ʻo `isolated lissencephaly`. I kekahi manawa, hiki ke ʻike pū ʻia me nā maʻi ʻē aʻe (`syndromes`) e like me `Miller-Dieker syndrome` a i ʻole `Walker-Warburg syndrome`.

Loaʻa pinepine i nā keiki me ka lissencephaly nā lohi nui o ka ulu ʻana a me nā kīnā noʻonoʻo . Eia nō naʻe, ʻokoʻa kēia mai kekahi keiki a i kekahi keiki, ma muli o ke koʻikoʻi o ke kūlana.

ʻO wai ka mea e loaʻa ana iā Lissencephaly? Pehea ka maʻamau?

Hoʻopilikia ka Lissencephaly i nā ʻōpū e ulu ana . Hoʻomohala pinepine ia ma waena o 12 a me 24 mau pule o ka hāpai ʻana. Hoʻokumu pinepine ʻia ia e nā hoʻololi genetic. Eia nō naʻe, hiki ke hana ʻia e nā kumu ʻaʻole genetic.

He maʻi laha ʻole kēia. Wahi a nā kānaka noiʻi, hoʻokahi wale nō i loko o 100,000 mau pēpē i hānau ʻia me Lissencephaly. No laila, mai hopohopo i kēia, akā he mea pono ke makaʻala.

He aha nā hōʻailona e hōʻike ai kahi pēpē me ka 'Lissencephaly'?

ʻOkoʻa loa nā hōʻailona o ka lissencephaly. Aia wale nō ia i ke koʻikoʻi o ke ʻano a inā pili ia me nā kūlana olakino ʻē aʻe. Hiki i kekahi mau keiki ke ulu maʻamau me nā pilikia aʻo liʻiliʻi wale nō. ʻOiai ʻo kekahi poʻe he mau hōʻailona koʻikoʻi loa. ʻOkoʻa loa nō hoʻi ke koʻikoʻi o kēia mau hōʻailona.

No laila, he mea nui loa e kamaʻilio me kāu kauka e pili ana i ka mea e manaʻo ai ma muli o ke ʻano o ka lissencephaly i loaʻa i kāu keiki.

ʻO kekahi o nā hōʻailona o ka 'Lissencephaly':

  • Nā hopu ʻana: ʻEiwa o loko o nā keiki he ʻumi me ka lissencephaly e loaʻa i ka maʻi epilepsy i loko o ka makahiki mua o ke ola. ʻO kēia ka hōʻailona maʻamau.
  • Paʻakikī i ka moni ʻana (dysphagia) a me ka ʻai ʻana: Paʻakikī paha i ka pēpē ke omo a moni i ka meaʻai.
  • Nā lohi o ka ulu ʻana: ʻAʻole paha e ulu ka pēpē e like me ka mea i manaʻo ʻia no ko lākou mau makahiki. Hiki ke lohi nā mea e like me ka minoʻaka, ke hāpai ʻana i ko lākou poʻo i luna, ka ʻōwili ʻana, a me ka noho ʻana i luna.
  • Nā kīnā noʻonoʻo a me nā ʻokoʻa aʻo ʻana: Hiki ke hoʻopilikia ʻia ka ulu ʻana o ka noʻonoʻo.
  • Nā ʻūmiʻi ʻiʻo: Hiki ke loaʻa nā ʻūmiʻi ʻiʻo a me ka ʻūmiʻi.
  • Nā pilikia me nā hana psychomotor: Aia paha nā pilikia me ka hoʻonohonoho lima-maka, ka hele wāwae, a me ka hopu ʻana i nā mea.
  • ʻAʻole e ulu pono: Lohi loa paha ka ulu ʻana o ke kino o ka pēpē. ʻAʻole paha lākou e piʻi i ke kaumaha a hiki ke noho wiwi.
  • He poʻo liʻiliʻi ma mua o ka maʻamau (microcephaly): ʻOi aku ka liʻiliʻi o ke poʻo ma mua o ka maʻamau no ka makahiki.
  • Nā ʻokoʻa o nā lālā hānau: Hiki ke hānau ʻia ʻoe me kekahi mau ʻokoʻa ma nā lima, nā manamana lima, a me nā manamana wāwae.

No ke aha e kū mai ai ʻo 'Lissencephaly'? He aha nā kumu?

Hiki ke hana ʻia ʻo Lissencephaly e nā kumu genetic a me nā kumu non-genetic. Hoʻomohala pinepine ia i loko o ka ʻōpū, ma waena o 12 a me 24 mau pule o ka hāpai ʻana.

I ka ʻōlelo maʻalahi, ʻo kēia mau kumu ma muli o ka neʻe ʻana o nā neuronal o ka ʻaoʻao waho o ka lolo o ka pēpē (nā neuronal cells). E noʻonoʻo e pili ana i ia mea, ʻo ka ʻāpana o ko kākou lolo e kuleana no ka neʻe ʻana a me ka noʻonoʻo ʻana ua kapa ʻia ʻo ka cerebral cortex. Loaʻa iā ia nā pelu hohonu (gyri) a me nā grooves (sulci), ʻeā?

I ka ulu ʻana o ka lolo o ka pēpē i loko o ka ʻōpū, hoʻokumu ʻia nā ʻāpana hou, a ma hope aku e lilo i mau ʻāpana aʻalolo kūikawā a neʻe i ka ʻili o ka lolo o ka pēpē. Ua kapa ʻia kēia ʻo 'neuronal migration'. Ma kēia ʻano, hoʻokumu ʻia kekahi mau papa o nā ʻāpana. Hoʻokumu kēia mau papa i nā 'gyri' (nā pelu).

Akā i ke ʻano o ka 'Lissencephaly', ʻaʻole hele kēia mau pūnaewele i kahi e pono ai lākou e hele. A laila, ʻaʻole lawa nā papa o nā pūnaewele i ka 'cerebral cortex' o ke pēpē. Ma muli o kēia, ua nalowale a i ʻole ua ulu ʻole kēlā mau 'gyri' (nā pelu).

Nā kumu ʻole genetic

ʻOiai he mea kakaikahi, hiki i nā kumu non-genetic ke kōkua i ka lissencephaly.

  • Nā maʻi viral i ka makuahine hāpai a i ʻole ke pēpē i hānau ʻole ʻia: ʻO kekahi mau maʻi viral, ʻoi aku hoʻi i nā mahina ʻekolu mua o ka hāpai ʻana (mai ka pule mua a hiki i ka pule ʻumikūmālua), hiki ke hoʻopilikia i ka ʻōpū.
  • Hoʻemi ʻia ke koko i hoʻolako ʻia me ka oxygen i ka lolo o ka pēpē (ischemia): Hiki ke hana ʻia kēia ʻano inā emi ka nui o ka oxygen i loaʻa i ka lolo i ka wā e ulu ana ka pēpē i loko o ka ʻōpū.

Nā kumu hoʻoilina

ʻO ka Lissencephaly ka mea i hoʻokumu pinepine ʻia e nā hoʻololi genetic . ʻO ka hoʻololi genetic kahi hoʻololi i ke kaʻina o kā mākou DNA. ʻIke ʻoe, ʻo kā mākou kaʻina DNA ka mea e hāʻawi i kā mākou mau cell i ka ʻike e pono ai lākou e hana i kā lākou mau hana. No laila, inā ʻaʻole piha a hōʻino ʻia paha kekahi hapa o kēia kaʻina DNA, hiki ke loaʻa nā hōʻailona o kahi kūlana genetic.

Hiki i kahi pēpē ke hoʻoilina i kēia loli hoʻoilina mai kekahi a i ʻole nā ​​mākua ʻelua. Aia ia i ke ʻano o ka hoʻoilina ʻana i ka loli hoʻoilina. Akā i kekahi manawa hiki i kēia mau loli hoʻoilina ke hana 'ma ke ʻano ulia pōpilikia', me ka ʻole o kekahi o ka ʻohana i loaʻa i kēia maʻi ma mua.

Ua ʻike nā kānaka ʻepekema i kekahi mau genes e hiki ke hana i ka lissencephaly. ʻO kekahi o lākou:

  • ʻO ka gene `LIS1` (`PAFAH1B1`): ʻO kahi loli (`mutation`) a i ʻole ka nalowale ʻana o kahi ʻāpana (`deletion`) o kēia gene e pili ana me ka `isolated lissencephaly` a me ka `Miller-Dieker syndrome`.
  • ʻO ka gene `DCX`: He gene kēia ma ka chromosome `X`. E like me kou ʻike, hoʻokahi chromosome `X` a hoʻokahi chromosome `Y` ko nā kāne. No laila, ʻoi aku ka nui o ka loaʻa ʻana o ka `Lissencephaly` i nā pēpē kāne ma muli o kēia hoʻololi ʻana o ka genetic. ʻOiai ʻo ka maʻamau he ʻelua chromosome `X` ko nā pēpē wahine, ʻoiai inā loaʻa iā lākou kēia maʻi, ʻaʻole pinepine ka ʻino o nā hōʻailona.
  • ʻO ka gene `ARX`: Loaʻa i nā pēpē me kahi mutation i loko o kēia gene ka `Lissencephaly` me nā hōʻailona ʻē aʻe. No ka laʻana, ka nele o nā ʻāpana o ka lolo (`agenesis of the corpus callosum`), nā ʻano ʻē o nā genitals, a me ka maʻi epilepsy koʻikoʻi. Aia pū ka gene `ARX` ma ka chromosome `X`. No laila, ʻo nā pēpē kāne ka mea i hoʻopilikia pinepine ʻia.
  • ʻO ka gene 'RELN': ʻO kahi mutation i loko o kēia gene ke kumu o kahi maʻi i kapa ʻia ʻo 'Norman-Roberts syndrome', ʻo ia hoʻi ʻo 'Lissencephaly'.

Pehea e ʻike ʻia ai ka Lissencephaly?

I kekahi manawa, kānalua paha nā kauka i ka lissencephaly i ka wā hāpai inā ua loaʻa i kekahi o ka ʻohana ke ʻano ma mua, a inā paha e hopohopo ka nānā ʻana o ka ultrasound i ka wā hāpai. I kēlā hihia, hiki ke ʻike ʻia ma o nā hoʻokolohua kūikawā i ka wā hāpai, e like me ka amniocentesis, a me ka nānā ʻana o ka fetal magnetic resonance imaging (MRI) o ka lolo o ka pēpē.

A i ʻole, ʻike pinepine nā kauka i ka 'Lissencephaly' ma hope o ka hānau ʻana o ke pēpē, ma o ka hoʻokolokolo kino ʻana o ke pēpē a me nā 'hoʻāʻo kiʻi' o ke poʻo.

Me kēia mau hoʻokolohua kiʻi, nānā nā kauka e ʻike inā ʻaʻohe nā `sulci` (nā grooves) a me nā `gyri` (nā pelu) ma ka ʻili o ka lolo o ke pēpē a i ʻole ua emi iho, a inā ua mānoanoa ka `cerebral cortex` (cerebral cortex).

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka `Lissencephaly`?

Inā kānalua kāu kauka i ka lissencephaly, ma muli o kou mōʻaukala ʻohana a i ʻole nā ​​​​hopena o kahi scan ultrasound i ka wā hāpai, hiki iā ia ke paipai i kekahi mau hoʻokolohua kūikawā i ka wā hāpai. ʻO kēia mau mea:

  • Hoʻāʻo DNA fetal ʻole-kelepona: Pili kēia i ka hoʻokaʻawale ʻana i ka DNA o ka makuahine a me ke keiki i loko o ka ʻōpū mai kahi hāpana o ke koko o ka makuahine. A laila hoʻāʻo ʻia kēia DNA ma kahi keʻena hoʻokolohua e ʻike ai inā he kiʻekiʻe aʻe ka manawa o kekahi pilikia chromosome.
  • ʻAmniocentesis: He hoʻāʻo kēia e hana pinepine ʻia i ka wā o ka trimester ʻelua a ʻekolu paha o ka hāpai ʻana. Ma kēia hoʻāʻo, hoʻohana ke kauka i kahi nila lahilahi e wehe i kahi liʻiliʻi o ka wai amniotic mai ka ʻeke amniotic e hoʻopuni ana i ka pēpē. A laila hoʻāʻo ʻia kēia hāpana wai i loko o kahi keʻena hoʻokolohua. Hiki i ka Amniocentesis ke ʻike i nā kūlana genetic a me nā mutations e hoʻoulu ai i nā kūlana e like me lissencephaly.
  • ʻO ka laʻana ʻana o ka villi Chorionic (CVS): Ma kēia hoʻāʻo, lawe ke kauka i kahi laʻana o ka ʻiʻo i kapa ʻia ʻo chorionic villi mai kou placenta. Hiki ke lawe ʻia kēia laʻana ma o ka cervix (transcervical) a i ʻole ma o ka paia ʻōpū (transabdominal). ʻO nā villi Chorionic he mau ʻōpuʻu liʻiliʻi e like me nā manamana lima ma ka placenta. Aia i loko o lākou nā mea genetic ponoʻī o ka pēpē. Hiki i kēia hoʻāʻo CVS ke ʻike inā he maʻi chromosomal ka pēpē a i ʻole kekahi maʻi genetic ʻē aʻe.

Hoʻohana nā kauka i nā hoʻokolohua kiʻi e like me kēia e ʻike ai i ka lissencephaly ma hope o ka hānau ʻana o kahi pēpē:

  • ʻO ke ultrasound poʻo: ʻO ka ultrasound kahi hoʻāʻo kiʻi non-invasive e hoʻohana ana i nā nalu kani alapine kiʻekiʻe e hana i nā kiʻi manawa maoli a i ʻole nā ​​​​wikiō o nā ʻōpū o loko, e like me ka lolo.
  • ʻO ke kiʻikuhi i helu ʻia ke poʻo (CT scan):He hoʻāʻo ka CT scan e hoʻohana ana i kahi kamepiula a me nā kukuna X e hana i nā kiʻi ʻekolu-dimensional (3D) o ka ʻāpana o ke kino e nānā ʻia ana, ma kēia hihia ke poʻo a me ka lolo o kāu keiki.
  • ʻO ke kiʻi ʻana o ka lolo me ka magnetic resonance imaging (MRI): He hoʻāʻo ʻeha ʻole ka MRI scan e hoʻopuka ana i nā kiʻi maopopo loa o nā ʻano a me nā ʻiʻo i loko o ka lolo o kāu keiki. Hoʻohana ka MRI i kahi magnet nui, nā nalu lekiō, a me kahi kamepiula e hana i kēia mau kiʻi kikoʻī. ʻAʻole ia e hoʻohana i nā kukuna X.

Hiki i kāu kauka ke kauoha i kahi hoʻāʻo EEG (Electroencephalogram) no kāu pēpē. Ana a hoʻopaʻa kahi EEG i nā hōʻailona uila i loko o ka lolo o kāu pēpē. I ka wā o kahi EEG, kau kahi loea i nā papa metala liʻiliʻi (electrodes) ma ke poʻo o kāu pēpē. Hoʻopili ʻia kēia mau electrodes i kahi mīkini e hāʻawi i ke kauka i ka ʻike e pili ana i ka hana lolo o kāu pēpē.

No ka hōʻoia ʻana i ka hōʻailona, ​​​​hoʻohana nā kauka i nā haʻawina DNA, e like me ka nānā ʻana o ka chromosomal a me ka nānā ʻana i ka hoʻololi ʻana o ka gene, e ʻike i ka loli genetic i kuleana no ka lissencephaly.

Pehea e mālama ʻia ai ʻo Lissencephaly?

ʻO ka ʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau a lāʻau lapaʻau paha no ka lissencephaly i kēia manawa . Akā, mālama nā kauka i nā hōʻailona kikoʻī o kēlā me kēia keiki me ka lissencephaly.

Pono paha kēia mau lāʻau lapaʻau i nā hana i hoʻonohonoho ʻia o kahi hui o nā loea like ʻole, e like me:

  • Nā Kauka Lapaʻau Keiki
  • Nā kauka lolo
  • Nā Gastroenterologists (nā loea i ka ʻōnaehana hoʻoheheʻe)
  • Nā mea lapaʻau meaʻai
  • Nā mea lapaʻau hanu
  • Nā mea hoʻōla hana a me nā mea hoʻōla kino

Hiki ke hoʻokomo ʻia nā kānaka e like me ia.

Nā lāʻau lapaʻau maʻamau:

  • Nā ʻano hana e maʻalahi ai i nā keiki me nā pilikia ʻai ke loaʻa nā meaola: no ka laʻana, ka hānai ʻana ma o kahi paipu i loko o ka ʻōpū (`gastrostomy tube' - G-tube') a/a i ʻole ka ʻōlelo a me ka moni ʻana (`speech and swallowing therapy').
  • Nā lāʻau lapaʻau anti-seizure: Nā lāʻau lapaʻau i hāʻawi ʻia e kāohi i nā seizure.
  • ʻO ka lāʻau lapaʻau hana a me ke kino e kōkua i ka ulu ʻana o ke kino a me ka hoʻoikaika ʻana i nā ʻiʻo: Nā mea e like me nā hoʻomaʻamaʻa e kōkua ai i ka ikaika o ke kino a me ka neʻe ʻana.
  • Ke kau ʻana i kahi ventriculoperitoneal (VP) shunt e kāohi i ka hydrocephalus: He hana ʻoki liʻiliʻi e hōʻemi i ka hōʻiliʻili ʻana o ka wai keu i loko o ka lolo.

Inā loaʻa i kāu keiki ka lissencephaly, e ʻōlelo paha kāu kauka i ke aʻo ʻana i nā genetics.Kuhikuhi i.

He aha ka wānana no kahi keiki me ka lissencephaly?

ʻOkoʻa loa ka nānā ʻana no kahi keiki me ka lissencephaly ma muli o ke koʻikoʻi o ke kūlana a inā pili ia me nā kūlana olakino ʻē aʻe . Hiki i nā keiki he nui me ka lissencephaly ke noho i ko lākou mau pae ulu mua. ʻO ke ʻano kēia, ʻaʻole hiki iā lākou ke hana i nā mea he nui ma o lākou iho.

Eia nō naʻe, hiki i kekahi mau keiki ke ulu maʻamau me nā ʻokoʻa liʻiliʻi o ke aʻo ʻana, no laila mai hoʻopau i ka manaʻolana.

Hiki i nā lāʻau lapaʻau mua a hoʻomau ke kōkua nui i kekahi mau keiki. ʻO kēia mau lāʻau lapaʻau:

  • Hoʻōla kino
  • Hoʻōla hana
  • Hoʻōla ʻōlelo
  • Hoʻōla ʻike maka

Hiki ke hoʻokomo ʻia nā mea e like me kēia.

Pono nā keiki he nui me ka lissencephaly e lawe i nā lāʻau lapaʻau i kēlā me kēia lā e pale aku i ka maʻi epilepsy a mālama i nā pilikia ʻē aʻe.

He aha ke kūlana o ke ola o kahi keiki me ka lissencephaly?

He pōkole ke ola maʻamau o kahi keiki me ka lissencephaly. Make ka hapa nui o nā keiki ma mua o 10 mau makahiki. ʻO nā kumu nui o ka make i waena o ka poʻe me ka lissencephaly ʻo ka hanu ʻana a me nā maʻi hanu .

He aha kaʻu e manaʻo ai inā loaʻa i kaʻu keiki ʻo 'Lissencephaly'? / Pehea e mālama ai i kaʻu pēpē?

ʻO ka mea nui e hoʻomanaʻo ai, ʻaʻohe keiki ʻelua me ka lissencephaly e hoʻopilikia like ʻia. ʻAʻohe mea hiki ke wānana pololei pehea e hoʻopilikia ʻia ai kāu keiki. ʻO ka mea maikaʻi loa āu e hana ai e hoʻomākaukau ai no ka wā e hiki mai ana, ʻo ia ke kamaʻilio me nā kauka loea i ka noiʻi ʻana a me ka mālama ʻana i ka lissencephaly.

No ke kōkua ʻana i ka mālama ʻana i kāu keiki me ka lissencephaly, e hahai pono i nā ʻōlelo a ke kauka:

  • E hāʻawi i nā lāʻau lapaʻau a pau e like me ke kauoha.
  • E hana pololei i nā loiloi hoʻomohala a me nā therapies.
  • E hōʻoia e hele i nā kipa lapaʻau a pau.

Hiki i ka Lissencephaly ke hoʻoulu i nā pilikia noʻonoʻo, neurologic, a/a i ʻole psychomotor. He nui nā keiki me ka lissencephaly e lohi ana i ka ulu ʻana a pono paha ke kōkua me nā hana o kēlā me kēia lā i ko lākou ola.

Hiki i ke kime lapaʻau o kāu keiki ke pane i kāu mau nīnau a hāʻawi iā ʻoe i ke kākoʻo. Hiki paha iā lākou ke haʻi iā ʻoe e pili ana i kahi hui kākoʻo i loaʻa ma kou wahi a i ʻole ma ka pūnaewele.

Hiki ke pale ʻia ka Lissencephaly?

ʻO ka mea pōʻino, ʻaʻole hiki ke pale ʻia ka hapa nui o nā hihia o ka lissencephaly. Inā ʻoe e hoʻolālā ana e loaʻa kahi keiki,E kamaʻilio me kāu kauka e pili ana i ka hoʻāʻo ʻana i ka genetic. E kōkua kēia iā ʻoe e hoʻomaopopo i ka pilikia o kāu keiki e loaʻa i kahi maʻi genetic e like me ka lissencephaly a i ʻole kahi maʻi i hiki ke hana ʻia e kahi hoʻololi genetic i hoʻoilina ʻia.

Āhea wau e ʻike ai i ke kauka e pili ana i ka `Lissencephaly`?

Inā ua ʻike ʻia kāu keiki me ka lissencephaly, pono lākou e hālāwai pinepine me kā lākou hui lapaʻau e ʻike inā e hana pono ana kā lākou lāʻau lapaʻau a pehea hoʻi e holomua nei ko lākou ulu ʻana.

Hiki ke paʻakikī ka hoʻomaopopo ʻana i ka maʻi Lissencephaly o kāu keiki. E hāʻawi kāu hui lapaʻau iā ʻoe i kahi hoʻolālā lapaʻau paʻa e pili pono ana i nā hōʻailona o kāu keiki. ʻO ka mea nui loa, ʻo ia ka hōʻoia ʻana e loaʻa ana i kāu keiki ke aloha a me ke kākoʻo e pono ai lākou i ko lākou ola a pau, a e makaʻala i nā hōʻailona hou e kū mai ana.

He aha ka leka a mākou e makemake ai e lawe i ka home mai kēia moʻolelo?

He kūlana kakaikahi a paʻakikī hoʻi ʻo Lissencephaly e kū mai ana i ka wā o ka ulu ʻana o ka lolo o kahi pēpē. Ma kēia kūlana, ʻaʻole i hana pono ʻia nā pelu a me nā ʻauwaha maʻamau (gyri a me sulci) i loko o ka lolo, e hopena ana i kahi ʻano "laumania".

  • Hiki ke kumu ʻia kēia e nā kumu genetic, a me, i kakaikahi, nā kumu ʻaʻole genetic .
  • Hiki ke ʻokoʻa loa nā hōʻailona mai kekahi keiki a i kekahi. He mea maʻamau ka maʻi ʻepilepsy, ka lohi o ka ulu ʻana, a me nā pilikia hānai.
  • ʻOiai ʻaʻohe lāʻau lapaʻau piha no kēia, aia nā ʻano lāʻau like ʻole e kāohi ai i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki .
  • ʻO ka mea nui loa, ʻo ia ka ʻike ʻana i ka wā mua loa, e hana e like me ka ʻōlelo aʻo a nā kauka, a hāʻawi i ke keiki i ke aloha a me ke kākoʻo e pono ai lākou .
  • Inā he mau nīnau hou aku kāu e pili ana i kēia, mai makaʻu e kamaʻilio me kāu kauka. Hiki nō hoʻi ke lilo i mea kōkua nui ke hui pū me nā mākua ʻē aʻe o nā keiki e like me kēia a kaʻana like i nā ʻike.

E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Aia nā kauka, nā mea hoʻōla, a me nā mea ʻē aʻe he nui e hiki ke kōkua iā ʻoe ma kēia huakaʻi.


ʻO Lissencephaly, lolo palupalu, nā ʻano hewa o ka lolo, ka ulu ʻana o ka fetal, nā hoʻololi genetic, ka lohi o ka ulu ʻana, ka maʻi epilepsy

Frequently Asked Questions (FAQ)

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka `Lissencephaly`?

Inā kānalua kāu kauka i ka lissencephaly, ma muli o kou mōʻaukala ʻohana a i ʻole nā ​​​​hopena o kahi scan ultrasound i ka wā hāpai, hiki iā ia ke paipai i kekahi mau hoʻokolohua kūikawā i ka wā hāpai. ʻO kēia mau mea:

⚠️ Important: The medical articles and information on Nirogi Lanka are for general awareness only, and are by no means a substitute for professional medical advice, diagnosis, or treatment. For any medical problem you have, consult a qualified physician immediately.

💬 Comments (0)

ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.

Hoʻohui i kāu manaʻo

E ʻoluʻolu e helu: 5 + 1 =