He ʻano ʻē anei ka lolo o kāu keiki liʻiliʻi? E aʻo kākou e pili ana i ka Porencephaly.

He mea maʻamau ke kaumaha nui ke haʻi aku nā kauka iā ʻoe e pili ana i kahi pilikia me ka ulu ʻana o ka lolo o kāu pēpē. I kekahi manawa, ʻo kēlā mau ʻōlelo, kēlā mau kūlana, he mea ʻē loa ia iā mākou. ʻĀ, aia kahi maʻi kakaikahi i kapa ʻia ʻo Porencephaly āu i lohe ʻole ai, akā he mea nui e ʻike. E kamaʻilio maʻalahi kākou e pili ana i kēia, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo, ʻae?

He aha maoli kēia mea i kapa ʻia ʻo porencephaly?

I ka ʻōlelo maʻalahi, ʻo ka porencephaly kahi maʻi kakaikahi kahi e ulu ai nā ʻeke a i ʻole nā ​​cysts i piha i ka wai, a i ʻole nā ​​cysts, i loko o nā hemispheres cerebral o ke keiki ma muli o ka hōʻino. Hoʻomaka pinepine kēia hōʻino i ka wā e noho ana ke pēpē i loko o ka ʻōpū a i ʻole ma hope koke iho o ka hānau ʻana. E noʻonoʻo e pili ana iā ia, he mea paʻakikī loa ko kākou lolo. Ke hana ʻia kahi cyst ma kekahi wahi i loko, hiki iā ia ke hoʻopilikia i ka ulu maʻamau a me ka hana o ka lolo. Hiki i kēia ke kumu i kekahi mau keiki e loaʻa ai nā pilikia ʻōlelo a i ʻole nā ​​hemahema neurological ʻē aʻe.

Pehea ka maʻamau o kēia ʻano?

ʻOiaʻiʻo, he mea laha ʻole loa kēia maʻi i kapa ʻia ʻo Porencephaly. ʻAʻohe helu kikoʻī e pili ana i ka nui o nā keiki ma ka honua i loaʻa iā ia. Akā hiki iā ia ke hoʻopilikia like i nā kaikamahine a me nā keikikāne.

Aia kekahi mau ʻano nui o ka porencephaly?

ʻAe, ʻelua mau ʻano nui o kēia.

• ʻO ka Porencephaly i loaʻa: ʻO kēia ke ʻano maʻamau. Hoʻokumu ʻia ia e ka hōʻino ʻana i ka lolo i ka wā o ka ulu ʻana o ka lolo o ke keiki.
• ʻO ka Porencephaly Genetic: He kūlana kakaikahi loa kēia. Hiki ke hana ʻia e kahi mutation genetic .

No ke aha lā kēia e hana nei i kā mākou keiki? He aha nā kumu?

Aia kekahi mau kumu no kēia. ʻOkoʻa nō hoʻi kēia mau kumu ma muli o nā ʻano ʻelua a mākou i kūkākūkā ai ma mua.

Nā kumu hoʻoilina

ʻOiai he mea kakaikahi loa, hiki ke hana ʻia kēia ʻano ma muli o nā loli, a i ʻole nā ​​hoʻololi genetic, i loko o kekahi mau genes (no ka laʻana, nā genes `COL4A1` a i ʻole `COL4A2` ). He mea nui loa kēia mau genes no ka hana ʻana i nā protein e hāʻawi ana i ka ikaika kūkulu i nā ʻiʻo like ʻole i loko o ko mākou kino. No laila, inā he kīnā i loko o kēia mau genes, hiki iā ia ke hoʻopilikia i ke kūkulu ʻana o nā ʻiʻo a hana i nā mea e like me nā cysts i ʻōlelo ʻia ma ka lolo.

Nā Kumu i Loaʻa

ʻO kēia ke ʻano maʻamau. ʻO ka mea e hana ʻia ma ʻaneʻi, ua hoʻopilikia ʻia ke kahe koko maʻamau i ka lolo o ka pēpē. Hiki ke hana ʻia kēia e kekahi mea e like me ka hahau ʻana , ka nele o ka oxygen i ka lolo, a i ʻole ke kahe ʻana o ke koko i loko o ka lolo. Hiki ke hana ʻia kēia pōʻino i ka wā e noho ana ka pēpē i loko o ka ʻōpū, i ka wā hānau, a i ʻole ma hope o ka hānau ʻana.

Ke nele ka lolo i ka oxygen a i ʻole ke kahe ʻana o ke koko, ʻoi aku ka nui o ka hana ʻana o nā lua i piha i ka wai (cysts) ma kahi o nā ʻiʻo lolo maʻamau. He ʻoiaʻiʻo kēia inā loaʻa iā ʻoe nā kumu pilikia penei:

• ʻO ka hoʻohana ʻana i ka waiʻona a i ʻole ka lāʻau lapaʻau i ka wā hāpai. He mea kēia e pono e pale ʻia.
• ʻO ka maʻi diabetes gestational. Inā loaʻa iā ʻoe kēia maʻi, pono ʻoe e hahai pololei i nā ʻōlelo a kāu kauka.
• Nā maʻi i loko o ka makuahine i ka wā hāpai.
• Nā maʻi e kū mai ana ma hope o ka hānau ʻana o ka pēpē.
• Nā trauma i ka wā hānau.
• ʻO nā kumu ʻē aʻe e hōʻino ai i ke kahe koko i ka lolo e komo pū me kekahi mau maʻi koko a me nā maʻi metabolic .

I kekahi manawa, hiki i nā kauka ke loaʻa kahi manaʻo o ke kumu kumu ma muli o kahi o nā cysts, ko lākou nui, a pehea ka laulā o lākou.

He aha nā hōʻailona o kēia maʻi? Pehea mākou e ʻike ai?

Hiki ke ʻokoʻa nā hōʻailona o ka porencephaly mai kekahi keiki a i kekahi keiki. ʻOkoʻa nō hoʻi lākou i ke koʻikoʻi o nā hōʻailona a me ka wā e hoʻomaka ai. Aia nā hemahema neurological i kahi o nā cysts i loko o ka lolo a me ko lākou nui. Ua like kēia me ka hahau ʻana.

Eia kekahi mau hōʻailona maʻamau:

• Ka lohi o ka ʻōlelo a me ka ʻōlelo. I kekahi manawa, nalowale paha ka hiki i nā kānaka ke ʻōlelo i nā huaʻōlelo i ko lākou wā ʻelemakule.
• Ka lohi o ka ulu ʻana o ke kino. Eia kekahi laʻana, ka lohi o ka hoʻomaka ʻana e hele.
• Ka lohi o ka ulu ʻana o ka noʻonoʻo.
• Ka lohi o ka ulu ʻana o ka nohona.
• Ke poʻo i hoʻonui ʻia a liʻiliʻi paha e pili ana i ka nui o ke kino.
• Ka emi ʻana o ke kani o nā ʻiʻo (Hypotonia). Hiki ke manaʻo ʻia he palupalu loa ke kino o ke pēpē.
• Ka nāwaliwali o ke kino.
• Nā pilikia i ka hoʻoponopono ʻana i ka ʻike sensory. No ka laʻana, nā loli i ke ʻano o ka pane ʻana o ka poʻe i ka hoʻopā a i ʻole ke kani.
• Nā hopu ʻana. ʻO kēia ka mea a mākou i ʻike ai he kūpono.

ʻO ka mea nui, ʻaʻole i loaʻa kēia mau ʻano āpau i kēlā me kēia keiki. Loaʻa paha i kekahi mau keiki hoʻokahi a ʻelua paha o kēia mau ʻano, aʻo kekahi poʻe he nui paha.

He aha nā pilikia ʻē aʻe e hiki ai i kēia ke hana?

I kekahi mau hihia, hoʻolilo kēia porencephaly i ke wai a puni ka lolo a me ke kaula spinal i mea ao, ʻo ia hoʻiHiki ke ālai ʻia nā kahawai e kahe ai ke kahe o ka wai cerebrospinal (CSF). ʻO kēia ke kumu o ka hōʻiliʻili ʻana o ka wai a hana i ke kaomi a puni ka lolo. Ua kapa ʻia kēia he hydrocephalus . Inā piʻi kēia kaomi, hiki ke ʻoi aku ka ʻino o nā hōʻailona e kū nei a i ʻole e ʻike ʻia nā hōʻailona hou. No ka laʻana, hiki ke loaʻa nā pilikia ʻeha poʻo, ka luaʻi ʻana, a me ka ʻike maka .

Eia kekahi, no ka mea hiki i ka porencephaly ke hoʻoulu i nā hopu ʻana, ʻoi aku ka nui o ka loaʻa ʻana o kēia mau keiki i ka maʻi epilepsy . Hiki i kekahi mau keiki ke loaʻa i ka spasticity muscle , ʻo ia ke ʻano e lilo ai nā ʻiʻo i ʻoʻoleʻa a paʻakikī.

Pehea e ʻike ai nā kauka i kēia?

I ka manawa pinepine, hōʻike nā keiki me ka porencephaly i nā hōʻailona o ke ʻano ma hope koke o ka hānau ʻana. Ua ʻike ʻia ka nui o nā keiki me ke ʻano ma mua o ko lākou makahiki hoʻokahi. I kekahi manawa, hiki ke ʻike ʻia kēia mau cysts ma kahi ultrasound prenatal ʻoiai ke pēpē i loko o ka ʻōpū. I kēia hihia, hiki i ke kauka ke ʻike i ke ʻano ma mua o ka hānau ʻana o ka pēpē.

I mea e hōʻoia ai i ka hōʻailona, ​​pono ke kauka e ʻike i nā kiʻi kikoʻī o ka lolo o kāu keiki. No ka hana ʻana i kēia, pono paha ʻoe a i ʻole kāu keiki e hana i nā hoʻokolohua e like me kēia:

• Ke nānā ʻana i ka ultrasound.
• Kiʻi CT.
• Nānā MRI.

Aia kekahi lāʻau lapaʻau no kēia? Pehea e mālama ʻia ai?

ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau kūpono no ka porencephaly. Eia nō naʻe, aia kekahi mau ala e hoʻokele ai i kona hopena. ʻO ke kumu nui o ka mālama ʻana, ʻo ia ka hōʻemi ʻana i nā pilikia neurological e kū mai ana.

Eia kekahi laʻana, inā loaʻa iā ʻoe ke ʻano a mākou i kamaʻilio ai, ʻo hydrocephalus, hiki ke hoʻoneʻe ʻia ke kahe keu i hōʻiliʻili a puni ka lolo.

Eia kekahi mau lāʻau lapaʻau e hiki ke kōkua i ke keiki:

• Lāʻau hoʻōki i ka hopu ʻana. Kāohi i ka hoʻomaka ʻana o ka maʻi.
• Lāʻau lapaʻau e hoʻomaikaʻi ai i ka paʻa ʻana o nā ʻiʻo.
• Lāʻau lapaʻau e hōʻemi ai i ka ʻeha.
• Hoʻōla kino: Hoʻoikaika i nā ʻiʻo o ke kino a hoʻomaʻalahi i nā neʻe ʻana.
• Hoʻōla ʻōlelo. E lanakila i nā pilikia ʻōlelo.
• Hoʻōla hana: E hoʻomaʻamaʻa iā ʻoe iho i nā hana o kēlā me kēia lā.
• I kekahi manawa hiki ke hana ʻia ke ʻoki ʻana e wehe i kahi cyst.
• Hiki ke hana ʻia ke ʻoki ʻana e hoʻokahe i ka wai cerebral keu e wehe i ke kahe cerebrospinal keu.

ʻO ka mea nui, ʻaʻole pono kēia mau lāʻau āpau no kēlā me kēia keiki. E hoʻoholo nā kauka i ka lāʻau maikaʻi loa ma muli o ke kūlana o ke keiki.

Pehea lā ka wā e hiki mai ana no ke keiki me kēia maʻi? (Wānana)

He mea paʻakikī iki kēia e ʻōlelo. No ka mea, loaʻa i kekahi mau keiki me ka porencephaly kekahi mau pilikia neurological. Akā hiki i kekahi mau keiki ke ola maʻamau me ka ʻole o nā pilikia. ʻOkoʻa loa ke koʻikoʻi o nā hōʻailona mai kekahi kanaka a i kekahi.

ʻO ka wā e hiki mai ana o ke keiki e pili ana i ka nui o nā cysts i loko o ka lolo, ko lākou wahi, ka helu o nā cysts, a pehea lākou e hoʻopilikia ai i kēlā me kēia keiki. Eia nō naʻe, me ka ʻike mua ʻana a me ka mālama kūpono a me nā therapies, hiki i nā keiki he nui ke alakaʻi i nā ola holomua a huahua.

Hiki ke pale ʻia ka Porencephaly?

ʻAʻole hiki ke pale ʻia kēia maʻi i nā manawa a pau. No ka mea, he paʻakikī iā mākou ke kāohi i nā mea i hoʻokumu ʻia e nā kumu hoʻoilina. Eia nō naʻe, ʻo ka loaʻa ʻana o kahi hāpai olakino hiki ke hōʻemi i ka pilikia o kāu pēpē e loaʻa i kēia maʻi i kekahi ʻano.

He mea nui loa ka pale ʻana i ka hoʻohana ʻana i ka waiʻona a i ʻole ka lāʻau lapaʻau i ka wā hāpai. Inā loaʻa iā ʻoe ka maʻi diabetes gestational, e hahai pono i nā ʻōlelo a kāu kauka. Pono ʻoe e hoʻāʻo e pale iā ʻoe iho mai nā maʻi.

ʻO ka Genetic Porencephaly kahi maʻi i hiki ke hoʻoili ʻia i kahi keiki inā loaʻa i kekahi o nā mākua ka gene mutated . Hiki i ka hoʻāʻo genetic ke kōkua i ka hoʻoholo ʻana inā loaʻa iā ʻoe a i ʻole kāu hoa ka gene. Hiki i ke kamaʻilio ʻana me kahi kākāʻōlelo genetic ke kōkua iā ʻoe e hoʻomaopopo i kou pilikia o ka hoʻoili ʻana i ka gene i kāu keiki.

He aha nā manawa ʻē aʻe e pono ai ʻoe e ʻike i ke kauka?

Inā ua ʻike ʻia kāu keiki me ka porencephaly a i ʻole ua manaʻo ʻia he porencephaly, pono ʻoe e ʻike koke i ke kauka inā e ulu a ʻoi aku paha ka ʻino o kekahi o kēia mau hōʻailona:

• Nā ʻeha poʻo
• Ka luaʻi ʻana
• Nā pilikia me ke kaulike a i ʻole ka hoʻonohonoho ʻana
• Nā hopu/hoʻopilikia
• Ka lolo o kekahi ʻāpana o ko lākou kino
• Nā loli o ka ʻike

He aha nā nīnau koʻikoʻi e nīnau aku ai i ke kauka?

Hiki iā ʻoe ke nīnau i ke kauka i nā nīnau e like me kēia:

• Inā loaʻa iā kāua kekahi keiki ʻē aʻe, he aha nā manawa kūpono e loaʻa pū ai i kēlā keiki ka porencephaly?
• He manaʻo maikaʻi anei no ko mākou ʻohana ke hana i ka hoʻāʻo hoʻoilina?
• E pono anei i kaʻu keiki ke ʻoki ʻana e wehe i nā cysts a i ʻole ke kahe nui mai kona lolo?
• He aha nā lāʻau lapaʻau maikaʻi loa e kōkua ai i kaʻu keiki e hoʻoponopono i nā lohi o ka ulu ʻana?

ʻO ka mea hope loa, eia ka ʻōlelo a nā mākua... (Leka Lawe-Home)

He maʻi laha ʻole ka Porencephaly. Hiki i nā keiki me kēia maʻi ke loaʻa nā kīnā kino a me ka noʻonoʻo, i kekahi manawa he ʻoluʻolu, i kekahi manawa he koʻikoʻi. Akā e hoʻomanaʻo, me ka ʻike mua ʻana a me ka mālama ʻana a me ka hoʻōla pono ʻana, hiki i nā keiki he nui ke ola maikaʻi loa, hauʻoli, a holomua. ʻAʻole ʻoe hoʻokahi, aia nā kauka, nā mea hoʻōla, a me nā mea ʻē aʻe he nui e kōkua iā ʻoe a me kāu keiki. ʻO ka mea nui loa, ʻaʻole e haʻalele i ka manaʻolana a hāʻawi i kāu keiki i ke aloha, ka mālama, a me ke kākoʻo e pono ai lākou.

Porencephaly , nā maʻi lolo, nā maʻi kamaliʻi, nā maʻi genetic, nā maʻi neurological, nā lohi o ka ulu ʻana