Ke loaʻa koke nei kāu keiki i nā ʻōʻili? E aʻo kākou e pili ana i ka Cortical Dysplasia!

Ke loaʻa koke nei kāu keiki liʻiliʻi i kahi hopu ʻana? A i ʻole he mau hōʻailona epilepsy kekahi āu i ʻike ai? I kekahi manawa makaʻu nui mākou i ka ʻike ʻana i kēia mau mea, ʻeā? ʻO kekahi kumu no kēia he maʻi lolo paha āu i lohe ʻole ai. I kēia lā e kamaʻilio mākou e pili ana i kekahi o ia ʻano maʻi, ʻo ia hoʻi ʻo Cortical Dysplasia . ʻOiai ke kani iki nei ka inoa, e wehewehe kākou.

He aha ka dysplasia cortical?

I ka ʻōlelo maʻalahi, he ʻano laha ʻole ka cortical dysplasia e hiki ai ke hoʻoulu i nā hopu ʻana . I kekahi manawa kapa ʻia e nā kauka he focal cortical dysplasia, a i ʻole (FCD). Ua haʻi ʻia ʻo "co-ticle" a me "dys-pla-sia."

Hoʻopilikia kēia kūlana i kou cerebral cortex . ʻO ia hoʻi, ka papa waho loa o ko kākou lolo. E noʻonoʻo, ʻo kēia cerebral cortex ka mea e hoʻomalu i nā mea nui he nui e like me ka neʻe ʻana o ko kākou kino, ko kākou mau manaʻo, ka ʻōlelo, ka hoʻomanaʻo, ka naʻauao, a me ke ʻano pilikino. Ua like ia me ka 'CPU' o kā kākou kamepiula.

ʻO ka huaʻōlelo lapaʻau "dysplasia" e pili ana i ka ulu ʻana o nā pūnaewele i loko o ke kino. No laila, i loko o kekahi me ka cortical dysplasia, ʻaʻole e ulu pono nā pūnaewele i loko o ka cerebral cortex, a i ʻole nā ​​pūnaewele lolo. Hana ʻia kēia i ka wā e noho ana ke pēpē i loko o ka ʻōpū .

He aha nā ʻano nui o ka cortical dysplasia?

Ua hoʻokaʻawale nā ​​kauka i kēia ʻano, i kapa ʻia ʻo cortical dysplasia, i ʻekolu mau ʻano nui, ma muli o nā ʻāpana o ka cerebral cortex (lobes) i hoʻopilikia ʻia, a pehea paha e hana ʻia ai nā cell maʻamau ʻole i loko o ka lolo.

ʻAno 1

Ma kēia ʻano, ua hoʻokumu ʻia nā pūnaewele ʻē i loko o kou cortex, a i ʻole nā ​​​​pūnaewele lolo i hoʻonohonoho ʻole ʻia e like me kā lākou pono. Hiki i kēia ke hoʻopilikia i kekahi ʻāpana o ka lolo. Akā ʻo ka mea maʻamau ka lobe temporal , ʻo ia ka ʻāpana o ka lolo e kū pono ana i nā pepeiao, a i ʻole ka lobe frontal , ʻo ia ka ʻāpana e kū pono ana i ka lae.

ʻAno 2

Ma kēia ʻano, ʻoi aku ka nui o nā pūnaewele i loko o ka cerebral cortex ma mua o ka maʻamau, a i ʻole he ʻano ʻē aʻe ko lākou. ʻOi aku ka paʻakikī a me ke koʻikoʻi o kēia ʻano ʻelua ma mua o ke ʻano mua. Hoʻopilikia pinepine ia i nā lobes frontal a me temporal.

ʻAno 3

Hiki mai kēia ʻano ke loaʻa iā ʻoe ka cortical dysplasia type 1 a i ʻole type 2 a me nā ʻano ʻē aʻe i loko o ka lolo. No ka laʻana, hiki ke hana me nā puʻupuʻu lolo, nā kīʻaha koko ʻē, a i ʻole nā ​​​​​​ʻeha o ka lolo. ʻO ka ʻāpana o ka lolo i hoʻopilikia ʻia e pili ana i kahi o ka puʻupuʻu a i ʻole ka wahi o ka lolo i hōʻino ʻia.

He aha nā hōʻailona? Pehea ʻoe e ʻike ai?

I loko o ka dysplasia corticalʻO ka hōʻailona nui a maʻamau ka hopu ʻana. ʻO kēia ka mea a mākou e kapa nei he convulsion. Hiki i kēia maʻi epilepsy ke hele mai i nā ʻano like ʻole:

• Nā ʻŌpū Kūlohelohe: Hoʻomaka kēia ma kekahi ʻaoʻao o ka lolo. ʻAʻole lākou e laha i kekahi ʻaoʻao. Hiki iā ʻoe ke ʻike i nā mea e like me ka ʻūlū ʻana a me ka haʻalulu i kēia manawa. Akā, ʻaʻole i loaʻa i nā kānaka a pau kēlā. Manaʻo paha ʻoe he ʻano ʻē a ʻokoʻa paha.
• Nā ʻōʻō Tonic-clonic (Grand Mal): Hoʻopilikia kēia ʻano ʻōʻō i nā ʻaoʻao ʻelua o ka lolo. ʻO kēia ka wā e ʻūlū ai ke kino a haʻalulu me ke kāohi ʻole. Hoʻopilikia ia i nā ʻaoʻao ʻelua o ke kino.
• Nā Spasms Pēpē: He ʻano kūʻē kūikawā kēia e loaʻa wale ana i nā pēpē ma lalo o hoʻokahi makahiki . I loko o kēia, hohola koke ke pēpē i ko lākou mau lima, nā wāwae, a me ka ʻāʻī, a laila huki koke hou iā lākou. Me he mea lā e loaʻa ana iā lākou kahi hopu. Hiki ke hana i kēia i nā manawa he nui i ka lā.

ʻO ka mea nui, hiki i kēia mau hopu ʻana i ka epileptic ke hoʻomaka i kēlā me kēia manawa o ke ola. Hoʻomaka kekahi poʻe e loaʻa iā lākou i ka wā kamaliʻi, i ka wā kamaliʻi. Akā hiki i kekahi poʻe ke loaʻa i kā lākou hopu ʻana i ka epileptic mua ma hope o ke ola.

Ma waho aʻe o ka maʻi epilepsy, hiki iā ʻoe ke ʻike i nā hōʻailona ʻē aʻe:

• Paʻakikī ke kau ʻana i ka manaʻo, hiki ʻole ke mālama i ka noʻonoʻo ma kahi hoʻokahi .
• Ke paʻakikī ke aʻo ʻana i nā mea hou a me nā manaʻo hou.
• Ka nāwaliwali o nā ʻiʻo ma kekahi ʻaoʻao o ke kino (hemiparesis).

Hiki i ka cortical dysplasia ke hoʻopilikia i ke ʻano kino o ka lolo. Akā hiki i ke kauka ke ʻike i kēia mau loli me kahi scan MRI wale nō, ʻo ia wale nō ke ala e ʻike pololei ai i nā loli i ka cortex (hina hina) o ka lolo.

No ke aha lā kēia kūlana? He aha ke kumu?

He maʻi hoʻoilina ka cortical dysplasia. ʻO ke ʻano kēia, ma muli o ka loli o nā genes, ʻaʻole ulu maʻamau ka lolo i ka wā embryonic, ʻo ia hoʻi, i ka wā e ulu ana ke pēpē i loko o ka ʻōpū.

Akā, ʻaʻole hiki i nā kānaka noiʻi ke ʻōlelo pololei i ke kumu o kēia loli genetic. Ke noiʻi nei lākou i nā kumu kūpono.

Manaʻo kekahi poʻe loea ua hoʻokumu ʻia ka Type 2 cortical dysplasia e kahi mutation i loko o kahi gene i kapa ʻia ʻo ke ala MTOR . Hana kēia mau genes i kahi protein e kōkua i kā mākou mau cell, ʻoiai nā cell lolo, e ulu a hoʻomohala. No laila, inā he mutation i loko o ka gene MTOR, hiki iā ia ke kumu i ke ʻano hewa o nā cell e ulu.

Pehea e ʻike ai nā kauka i kēia? (Diagnosis)

Hoʻoponopono ke kauka i ka cortical dysplasia ma o nā hoʻokolohua kiʻi kikoʻī .

Pono ʻoe e haʻi i kāu kauka e pili ana i kāu mau hōʻailona a me ka wā i ʻike mua ai ʻoe iā lākou. Inā hiki, he mea nui e hāʻawi i nā kikoʻī e pili ana i kāu mau hanana hopu (e like me ke ʻano o ka hoʻomaka ʻana, pehea ka lōʻihi o ko lākou mau manawa, nā mea e hana nei i ia manawa, a pēlā aku) no ka mea hiki i kēia mau kikoʻī ke kōkua iā ʻoe e hana i kahi hōʻailona.Hiki i ke kauka ke ʻike i ke ʻano o kēia.

A laila e lawe ke kauka i nā kiʻi o kou lolo e ʻike inā he mau pūnaewele i kūlike ʻole ke ʻano a i ʻole i kūlike ʻole i loko o ka cerebral cortex. ʻO nā hoʻokolohua hiki iā lākou ke hoʻohana no kēia:

• MRI (Magnetic Resonance Imaging): Hiki i kēia ke kiʻi i nā kiʻi maopopo loa o ka lolo.
• EEG (Electroencephalogram): Ke ana kēia i ka hana uila o ka lolo. Kōkua kēia i ka loaʻa ʻana o ke kumu o ka maʻi epilepsy.
• MEG (Magnetoencephalography): He hoʻāʻo kēia e nānā ana i ka hana o ka lolo, e like me EEG.
• ʻO ka nānā ʻana o PET (Positron Emission Tomography scan)
• ʻO ke scan SPECT (Single Photon Emission Computed Tomography scan)

ʻO ka hana a kēia mau hoʻokolohua a pau, ʻo ia ke nānā i nā mea e hana nei i loko o ka lolo.

He aha nā lāʻau lapaʻau i loaʻa?

E ʻōlelo aku kāu kauka i nā lāʻau lapaʻau e kāohi i kāu mau hōʻailona a hoʻemi i ke alapine (frequency) o nā hopu ʻana o ka epileptic.

E hoʻomaka pinepine lākou me nā lāʻau anti-seizure . Akā eia ka mea. Hiki i ka cortical dysplasia ke hana i ka epilepsy kū'ē i ka lāʻau. ʻO ia hoʻi, hiki ke paʻakikī iki ka hoʻomalu ʻana me ka lāʻau lapaʻau ma mua o ka epilepsy maʻamau. ʻOiai hiki i ka lāʻau lapaʻau ke hana i ka wā mua, hiki ke lilo i mea liʻiliʻi ka maikaʻi i ka hala ʻana o ka manawa.

ʻO ka hahai ʻana i ka ʻai ketogenic (a i ʻole ka ʻai keto) e kōkua paha i ka hōʻemi ʻana i ke alapine o nā hopu ʻana o ka epileptic. Pili kēia i ka ʻai ʻana i kahi ʻai momona kiʻekiʻe a haʻahaʻa i nā kalapona. Hoʻololi kēia i ke ala e loaʻa ai ka ikehu i ka lolo. Hiki iā ʻoe ke ʻimi i ke kōkua o kahi meaʻai meaʻai e kōkua iā ʻoe e hoʻololi i kēia ʻano ʻai.

Inā ʻaʻole hiki i nā lāʻau lapaʻau ʻē aʻe ke hoʻomalu pono i kāu maʻi epilepsy, pono paha ʻoe e hana i ke ʻoki ʻana i ka maʻi epilepsy . E wehewehe kāu kauka ʻoki i ke ʻano o ke ʻoki ʻana āu e hana ai a me nā mea e manaʻo ai.

Hiki ke hoʻopau loa ʻia kēia maʻi me ke ʻoki kino?

Hiki paha i kāu kauka lapaʻau ke wehe i kēia maʻi. E hilinaʻi kēia i kekahi mau kumu:

• He aha ke ʻano o ka cortical dysplasia āu e loaʻa nei?
• Ma hea i loko o ka lolo e hoʻomaka ai ka maʻi epilepsy?
• ʻO ke koʻikoʻi o ke ʻano o ka dysplasia.

Inā hiki i ke kauka lapaʻau ke wehe i kēlā mau pūnaewele ʻano ʻē me ka ʻole o ka hōʻeha ʻana i ka hana o kou lolo, he mea maikaʻi kēlā. ʻO ka wehe ʻana i kēia mau pūnaewele hiki ke hōʻemi i ke alapine o nā hopu ʻana a hōʻemi i ka nui o ka lāʻau lapaʻau āu e pono ai e lawe. Eia nō naʻe, i kekahi manawa ke pono ʻoe e wehe i kēlā mau pūnaewele ʻano ʻē a pau, pono paha ʻoe e wehe i kekahi mau ʻiʻo lolo maikaʻi.Inā hana ʻia kēia, hiki ke hoʻopilikia ʻia kou hiki ke neʻe, ʻike, a hoʻopā i nā ʻano ʻē aʻe. E wehewehe kāu kauka ʻoki i nā pono a me nā pōʻino o kēia ʻoki kino iā ʻoe a kōkua iā ʻoe e hoʻoholo inā kūpono ia iā ʻoe.

ʻO kekahi ala ʻē aʻe, ʻo ia ke hoʻokaʻawale i kēia mau pūnaewele ʻē mai nā wahi ʻē aʻe o ka lolo. Hoʻōki kēia i ka laha ʻana o ka maʻi epilepsy mai kēlā mau pūnaewele. I kekahi manawa, hiki i ke kauka lapaʻau ke luku i kēia mau pūnaewele ʻē me ka "lāʻau laser", ʻoi aku ka liʻiliʻi o ka pilikia a me ka liʻiliʻi o ka invasive ma mua o ke ʻoki lolo kuʻuna.

Pehea ke koʻikoʻi o ka cortical dysplasia?

Hiki i kekahi kūlana e hoʻopilikia ai i ka lolo ke koʻikoʻi. ʻO ka dysplasia cortical kekahi o ia ʻano. Akā , mai hopohopo . E ʻimi kāu kauka i nā ala e hoʻokele ai i kāu epilepsy a me nā hōʻailona ʻē aʻe. Ma ka mālie, e hiki iā ʻoe ke hōʻemi i ka hopena o kēia kūlana i kou ola o kēlā me kēia lā.

Hiki ke ho'ōla loa ʻia kēia?

He hiki nō paha, ʻoiai ma hope o ke ʻoki kino, ʻaʻole loa ʻoe e loaʻa hou i ka hopu ʻana. He mea nui kēlā!

Eia nō naʻe, ʻaʻole he "lāʻau lapaʻau" ka cortical dysplasia e like me ka lawe ʻana i ka lāʻau lapaʻau no ke anu. ʻOi aku ka nānā ʻana o ka lāʻau lapaʻau i ka hoʻokele ʻana i nā hōʻailona a me ka maʻi epilepsy ma mua o ka loaʻa ʻana o kahi lāʻau lapaʻau .

Pehea lā ke ʻano o ke ola me kēia maʻi?

ʻO ka maʻamau, ʻaʻole ia e hoʻoulu i nā pilikia make a i ʻole e hoʻopilikia i kou ola. He nūhou maikaʻi kēlā. Eia nō naʻe, inā loaʻa pinepine iā ʻoe nā hopu koʻikoʻi (ʻoi aku hoʻi nā hopu tonic-clonic), hiki iā ia ke hoʻonui i kou pilikia o ka make ʻana ma mua iki . Inā ʻoe e hopohopo nei pehea e hoʻopilikia ai kēia i kou olakino lōʻihi, e kamaʻilio me kāu kauka. Hiki iā ia ke kōkua iā ʻoe e noho palekana a olakino.

Āhea mākou e ʻike ai i ke kauka?

E haʻi aku kāu kauka iā ʻoe i ka pinepine o kou hoʻi ʻana mai ('nā kipa hahai') a me nā hoʻokolohua āu e pono ai. I ka hoʻomaka ʻana, ʻoiai ma hope o ka hoʻomaka ʻana o ka lāʻau lapaʻau a ma mua a ma hope o ke ʻoki ʻana, pono ʻoe e ʻike pinepine i kāu kauka.

He mea nui: Inā loaʻa iā ʻoe nā hopu hou aku, a inā ʻike ʻia he ʻoi aku ka koʻikoʻi ma mua o ka wā ma mua, e hōʻoia e haʻi i kāu kauka . He hōʻailona paha ia e pono e hoʻololi i kāu lāʻau lapaʻau, a i ʻole e loaʻa ana paha iā ʻoe ka maʻi epilepsy kūʻē i ka lāʻau.

He aha ka mea e hana ai i ka wā pilikia?

Inā loaʻa iā ʻoe kahi hopu ʻana i ʻoi aku ma mua o ʻelima mau minuke, a inā he mau hopu ʻana i ka lālani, e kāhea koke i ka 911 (a i ʻole kāu helu ulia pōpilikia kūloko). He ulia pōpilikia kēia.

Nā nīnau koʻikoʻi e nīnau aku i kāu kauka

Ke ʻike ʻoe i kāu kauka, mai kānalua e nīnau i nā nīnau e like me kēia:

• He aha ke ʻano o ka cortical dysplasia i loaʻa iaʻu?
• E hana anei ka lāʻau lapaʻau epilepsy iaʻu?
• Āhea wau e noʻonoʻo ai i ke ʻoki kino?
• He aha ke ʻano o ke ʻoki kino i kūpono loa iaʻu?

He mea paʻakikī ke noʻonoʻo pehea e hiki ai i kekahi mau hunaola liʻiliʻi i loko o ka lolo ke loaʻa ka hopena nui i ko kākou olakino. Akā, e nīnau i kāu kauka a kauka ʻoki paha i nā nīnau a hopohopo paha āu . E wehewehe lākou i nā mea āpau e pono ai ʻoe e ʻike e pili ana i nā mea e hana nei i loko o kou lolo a me kou kino, a me nā mea hiki iā lākou ke hana e kōkua iā ʻoe e ʻoluʻolu.

Eia kahi hōʻuluʻulu manaʻo o nā mea a mākou i kūkākūkā ai (Leka Lawe-Home):

ʻAe, i kēia manawa ua ʻoi aku kou maopopo i ka Cortical Dysplasia a mākou i kamaʻilio ai i kēia lā. E hoʻomanaʻo:

• He kūlana kēia e kū mai ana i ka wā e ulu pono ʻole ai nā hunaola o ka lolo a hiki ke alakaʻi i ka maʻi epilepsy .
• Hiki paha kēia ma muli o nā kumu genetic .
• ʻO ka hōʻailona nui nā ʻano like ʻole o ka hopu ʻana o ka epileptic .
• ʻIke ʻia kēia ma o nā hoʻokolohua kūikawā e like me ka MRI.
• ʻO nā koho lapaʻau e pili ana i ka lāʻau lapaʻau, ka ʻai ketogenic, a inā pono, ke ʻoki kino .
• Ma mua o ke kamaʻilio ʻana e pili ana i kahi "ho'ōla" piha, he mea nui e kaohi i nā hōʻailona .
• Hiki ke ola i kahi ola maʻamau me kēia maʻi, akā pono ʻoe e makaʻala e pili ana i nā hopu ʻana o ka epileptic koʻikoʻi.
• He mea nui loa e noho mau i ka launa pū ʻana me kāu kauka a hahai i kāna mau kuhikuhi.

Inā loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai kēia mau hōʻailona, ​​mai kānalua e ʻike i ke kauka no ka ʻōlelo aʻo. Hiki i ka ʻike mua a me ka mālama ʻana ke hana i kahi ʻokoʻa nui.

ʻO ka Dysplasia Cortical, Epilepsy, Nā Huʻihuʻi, Nā Maʻi Lolo, Focal Cortical Dysplasia, Huʻihuʻi, Epilepsy, Epilepsy Kamaliʻi, Nā Maʻi Hoʻoilina