Ua ʻike anei ʻoe i kāu keiki liʻiliʻi e ʻūlū koke ana, me he mea lā ua pā ʻia e ka uila? Ua pelu koke kona mau lima a me kona mau wāwae, a i ʻole e hoʻolei ʻo ia iā ia iho i hope. ʻOiai inā he mau kekona wale nō kēia, inā hana ʻia i nā manawa he nui i ka lālani, hiki ke hopohopo loa i kekahi makua e ʻike ana. E kamaʻilio mākou e pili ana i kahi maʻi weliweli loa, akā he mea nui loa ka ʻike koke ʻana. ʻO ia ka West Syndrome.
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I ka ʻōlelo maʻalahi, he aha ka West Syndrome?
He ʻano maʻi epilepsy kakaʻikahi ka West Syndrome e hoʻopilikia ana i nā keiki ʻōpio, ʻoiai ka poʻe ma lalo o hoʻokahi makahiki . Ua kapa ʻia ia ma muli o ke kauka nāna i ʻike mua.
He nui nā inoa o kēia i waena o nā kauka. Hiki iā ʻoe ke lohe i ka inoa ʻo 'Infantile Spasms (IS)'. ʻO ia hoʻi, ʻo "baby spasms." Ua kapa ʻia hoʻi ʻo "Epileptic Spasms." ʻOiai he nui nā inoa, pili lākou a pau i ke ʻano lapaʻau hoʻokahi.
He aha nā hōʻailona o kēia maʻi?
ʻO ke ʻano nui o kēia, ʻo ia ka ʻūlū ʻana a mākou i kamaʻilio ai ma mua. Ua kapa ʻia kēia mau mea he 'spasms'. He nui nā ʻano kūikawā o kēia mau ʻūlū:
- Pehea e hiki mai ai nā ʻūmiʻi: Kūlou koke ke pēpē i mua (e like me ka wā e ʻeha ai ka ʻōpū) a i ʻole e hoʻolei i hope. ʻOʻoleʻa koke nā lima a me nā wāwae a ʻoniʻoni.
- Manawa: He mau kekona wale nō ka lōʻihi o hoʻokahi hahau ʻana.
- Nā Hui: ʻAʻole hiki mai kēia mau ʻūmiʻi i hoʻokahi manawa a pau. Hele mai lākou i kahi ʻano hoʻomau, hui pū ʻia . Hahai ʻia kekahi ʻūmiʻi e kekahi, a laila kekahi, a laila kekahi, a hiki i 150 mau ʻūmiʻi i loko o kahi hui. Aia nā pēpē i loaʻa a hiki i 60 mau ʻūmiʻi i ka lā.
- Manawa: Hiki iā ʻoe ke ʻike i kēia mau neʻe ʻana i ka wā e ala ai ke pēpē mai ka hiamoe.
Ma waho aʻe o kēia mau haʻalulu, hiki ke ʻike ʻia nā hōʻailona ʻē aʻe.
| Hōʻailona | Wehewehena |
|---|---|
| Uē mau/huhū mau (Crankiness) | Ke uē mau nei ke pēpē me ke kumu ʻole a paʻakikī ke hōʻoluʻolu. |
| Ka nalowale o ka makemake | E hōʻemi a hōʻole paha i ka inu waiū. |
| Nā loli hiamoe | Ka hiamoe iki ʻana i ka pō, ka hiamoe nui ʻana i ke ao. |
| Ka hoʻopau ʻana o ka ulu ʻana a i ʻole ka regression | He ʻano koʻikoʻi loa kēia. ʻO ke pēpē, ka mea maʻa mau i ka hana ʻana i nā mea e like me ka minoʻaka, ka pāʻani, a me ka ʻike ʻana i kona makuahine, e hoʻōki mālie ana i ka hana ʻana i kēlā mau mea. Poina iā ia nā mea āna i aʻo ai ma mua. |
No ke aha e hana ai kēia i nā pēpē?
He maʻi laha ʻole ka West Syndrome. Hoʻopilikia ia ma kahi o 6 o 10,000 mau pēpē. Hoʻopilikia pinepine ia i nā pēpē ma waena o 4 a me 8 mau mahina. ʻOiai ʻaʻole ʻike mau ʻia ke kumu pololei, ua ʻike ʻia kekahi mau kumu nui.
- Nā pilikia kūkulu o ka lolo: ʻO nā mea ʻino e kū mai ana i ka wā o ka ulu ʻana a i ʻole ke kūkulu ʻia ʻana o ka lolo.
- Nā loli genetic: Hiki ke hana ʻia kēia kūlana e kekahi mau loli i nā genes o ka pēpē.
- Ka pōʻino o ka lolo: Ma muli o ka nele o ka oxygen i ka lolo i ka wā hānau a i ʻole i kekahi manawa ʻē aʻe, e like me kahi ulia.
- Nā maʻi metabolic: Ma muli o kekahi mau pilikia me nā kaʻina hana kemika o ke kino.
- Nā maʻi lolo: Nā maʻi laha e hoʻopilikia ana i ka lolo.
- ʻO ka Tuberous Sclerosis Complex: He ʻano genetic kahi e ulu ai nā ʻōpū ʻaʻole cancerous i loko o ke kino a me ka lolo.
Pehea e hana ʻia ai ka hōʻailona?
Inā ʻike ʻoe i kāu pēpē e loaʻa ana i kēia ʻano hopu ʻana, pono ʻoe e ʻike i kahi pediatrician i ka hikiwawe loa .
He mea nui loa: Ma mua o kou hele ʻana e ʻike i kāu kauka, he mea kōkua nui inā hiki iā ʻoe ke hoʻopaʻa wikiō i nā ʻūlū o kāu pēpē. Hiki ke kuhihewa pinepine ʻia kēia no ka colic, no laila he mea kōkua nui ia no ke kauka ke ʻike i ke wikiō e kōkua i ka ʻike ʻana i ke kūlana.
Kuhikuhi nui ke kauka i kēia mau hoʻokolohua:
- EEG (Electroencephalogram): ʻO kēia ka hoʻāʻo koʻikoʻi loa. I ka pōkole, hoʻopaʻa ia i ka hana uila i loko o ka lolo ma ke ʻano he ʻano. E hōʻike kahi pēpē me West Syndrome i kahi ʻano maʻamau ʻole i kapa ʻia ʻo 'Hypsarrhythmia' ma ka EEG. ʻO kēia ke kumu nui i ka ʻike ʻana i kēia maʻi.
- MRI a i ʻole CT scan:Kōkua kēia mau scan e ʻike inā he mau pilikia, pōʻino, a i ʻole nā mea ʻē i ke ʻano o ka lolo.
- Nā hoʻāʻo koko, mimi, a me ka wai cerebrospinal (CSF): Kōkua kēia mau hoʻāʻo e hoʻoholo inā he pilikia genetic a metabolic paha ke kumu o ka haʻalulu.
He aha nā lāʻau lapaʻau no kēia?
He mea nui loa e hoʻomaka i ka lāʻau lapaʻau i ka wā hikiwawe ma hope o ka ʻike ʻia ʻana o ka West Syndrome, no ka mea, ʻo ka kaohi ʻana i ka hopu ʻana e kōkua i ka hōʻemi ʻana i ka hōʻino ʻia ʻana o ka lolo o ka pēpē.
Lāʻau lapaʻau
ʻO ka lāʻau lapaʻau i hoʻohana pinepine ʻia no kēia.
- ACTH: He hormone kēia. Hāʻawi ʻia ia ma ke ʻano he inikini. He mea kūpono loa ia i ka kaohi ʻana i ka puʻuwai.
- ʻO Vigabatrin (Sabril): He lāʻau lapaʻau kēia no ka maʻi epilepsy. He mea kūpono loa ia i nā pēpē i loaʻa i ka West Syndrome, kahi maʻi i hoʻokumu ʻia e Tuberous Sclerosis.
- Nā Steroid: Hoʻohana ʻia nā steroid e like me 'Prednisone'.
Hiki i kēia mau lāʻau lapaʻau ke loaʻa nā hopena ʻaoʻao e like me ka emi ʻana o ka pale ʻana, ka piʻi ʻana o ke koko, a me nā pilikia ʻike. No laila, nānā mau ke kauka i ka pēpē a mālama iā ia ma muli o nā pono a me nā pilikia.
ʻAi Ketogenic
No kekahi mau pēpē, inā ʻaʻole lawa ka lāʻau lapaʻau e kāohi i ko lākou maʻi kahe, hiki i ke kauka ke kuhikuhi i kēia ʻai kūikawā. He ʻai momona kiʻekiʻe kēia, haʻahaʻa loa i ka kalapona .
ʻŌlelo Aʻo: Mai ho'āʻo e hana i kēia ma ka home wale nō. Hoʻomaka pinepine ʻia kēia ma ka haukapila, me ke kōkua o ke kauka a me kahi meaʻai meaʻai/meaʻai.
ʻoki kino
Inā hōʻike maopopo ka MRI scan ua hana ʻia ka hahau e kahi ʻeha kikoʻī i loko o ka lolo, hiki i ke kauka ke kuhikuhi i ka wehe ʻoki ʻana i kēlā wahi. ʻAʻole hiki i nā kānaka āpau ke hana i kēia. Hoʻoholo ʻia e kahi hui lapaʻau.
He aha kāu e ʻōlelo ai e pili ana i ka wā e hiki mai ana? (Outlook)
ʻOiai he nīnau paʻakikī kēia e nīnau, he mea nui e ʻike i ka ʻoiaʻiʻo. E hoʻoholo ʻia ka wā e hiki mai ana o West Syndrome e kekahi mau kumu koʻikoʻi.
- Kumu: He aha ke kumu o ka hopu ʻana? Inā ua hana ʻia e kahi ʻeha nui o ka lolo, hiki ke maikaʻi ʻole nā hopena. Inā ua hana ʻia me ke kumu ʻole (idiopathic), maikaʻi loa nā hopena.
- Ka manawa e hoʻomaka ai i ka lāʻau lapaʻau: Inā hiki ke hoʻomaka ʻia ka lāʻau lapaʻau i loko o hoʻokahi mahina o ka hōʻoia ʻana, ʻoi aku ka nui o ka hiki ke hoʻi hou ka ulu ʻana o ka pēpē i ka maʻamau.
- Pane i ka lāʻau lapaʻau: Pehea ka wikiwiki e hiki ai ke kaohi i ka hopu ʻana.
ʻO ka maʻamau, pau kēia kamaʻilio ʻana ma kahi o 4 makahiki. Eia naʻe,Hiki i nā keiki he nui ke loaʻa i nā ʻano maʻi epilepsy ʻē aʻe ma hope.
He nui nā keiki i loaʻa i kekahi pae o ke kīnā aʻo a i ʻole nā pilikia ulu noʻonoʻo. Eia nō naʻe, me ka mālama maikaʻi loa i loaʻa i ka wā mua, hiki i kahi 20%-25% o nā pēpē ke ola i kahi ola maʻamau me ka naʻauao maʻamau. No laila, he mea nui ka hana mua.
Leka Lawe-Home
- Inā ʻike ʻoe i kahi ʻūlū koke a hui pū ʻia i loko o kāu keiki liʻiliʻi (ʻoi aku hoʻi ma waena o 3-12 mau mahina), mai hoʻowahāwahā iā ia.
- Inā hiki, e hoʻopaʻa wikiō i nā ʻūmiʻi. He mea kōkua nui ia i ke kauka.
- E ʻike koke i ke kauka keiki. ʻO ka hoʻonele ʻana i ka manawa hiki ke hoʻonui i ka pōʻino i ka lolo o ka pēpē.
- He maʻi hiki ke mālama ʻia ʻo West Syndrome. Hiki i ka mālama mua ke kaohi i ke ʻano a hāʻawi i ka pēpē i ka manawa kūpono loa no ka ulu ʻana i ka wā e hiki mai ana.
- He paʻakikī kēia huakaʻi, akā, ʻaʻole ʻoe hoʻokahi. E kamaʻilio pinepine me kāu kauka a e loaʻa ke kākoʻo āu e pono ai.
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