Loaʻa i kāu keiki kēia mau hōʻailona ʻē? E aʻo kākou e pili ana i ka sclerosis maha (MS) o ke keiki!

Ke pilikia koke nei kāu keiki liʻiliʻi i ka hele ʻana? A i ʻole he pohihihi a palalulu paha ko lākou ʻike? I kekahi manawa he mau mea liʻiliʻi wale nō kēia e kū mai ana. Eia nō naʻe, i nā hihia kakaikahi, hiki i kēia mau hōʻailona ke lilo i mau hōʻailona mua o kahi maʻi a mākou e kamaʻilio nui ʻole ai, akā he mea nui loa ia e makaʻala. I kēia lā e kamaʻilio mākou e pili ana i kekahi ʻano maʻi, i kapa ʻia ʻo 'Multiple Sclerosis' a i ʻole 'MS', kahi e hoʻopilikia ai i nā keiki ma lalo o 18 mau makahiki. Mai hopohopo, e kamaʻilio maʻalahi mākou e pili ana i kēia, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.

He aha ka "multiple sclerosis (MS)" a kēia mau keiki e ulu nei?

I ka ʻōlelo maʻalahi, he maʻi kēia i hoʻokumu ʻia e kahi hana hewa o ka ʻōnaehana pale. Ua like ka ʻōnaehana pale o ko mākou kino me kahi pūʻali koa e pale ana i kahi ʻāina. ʻO kāna hana ka pale ʻana i ko mākou kino ma ke kaua ʻana i nā germs a me nā maʻi e hele mai ana mai waho. Eia naʻe, i loko o kahi keiki me ka `MS`, hana kēia ʻōnaehana pale i kahi hewa liʻiliʻi. Hoʻomaka ia e hoʻouka i nā cell olakino o kona kino ponoʻī.

I mea e pololei ai, kuhikuhi kēia hoʻouka kaua i ka ʻōnaehana nerve waena o ke keiki. ʻO ia hoʻi, ka lolo a me ke kaula kuamoʻo. Loaʻa i nā aʻalolo i loko o ka lolo a me ke kaula kuamoʻo kahi uhi pale a puni lākou, e like me kahi ʻūpā palakiko a puni kahi uea uila. Kāhea mākou i kēia uhi ʻo "Myelin." ʻO "Myelin" ka mea e hiki ai i nā leka ke hele wikiwiki a maʻalahi ma o nā aʻalolo.

I loko o MS, hoʻouka ka ʻōnaehana pale a hōʻino i kēia mau pūnaewele myelin. Ua like ia me ka ʻoki ʻia ʻana o ka ʻūpā o ke kaula uila ma nā wahi. ʻO kēia ke kumu o ka ālai ʻia a i ʻole ka hoʻopilikia ʻia ʻana o nā leka aʻalolo mai ka lolo a i ke koena o ke kino.

ʻO kēia hōʻino i ka myelin ke kumu o nā hōʻailona e like me ka nāwaliwali o ke kino, ka luhi, ka nalowale o ka hoʻomanaʻo, ka paʻakikī i ka hele wāwae, a me nā loli i ka ʻike.

E noʻonoʻo, he hoaaloha ko kāu keiki i kapa ʻia ʻo Nilanthi. Hoʻomaka koke ʻo Nilanthi e ʻeha i kekahi maka, a ua emi kona ʻike. I kona hōʻike ʻana i ke kauka, ua ʻike ʻo ia he hōʻailona mua paha ia o MS.

ʻAʻohe lāʻau lapaʻau no MS i kēia manawa. Eia nō naʻe, aia nā lāʻau lapaʻau kūpono e kāohi i nā hōʻailona a hōʻemi i ke kīnā lōʻihi i hoʻokumu ʻia e ka maʻi. No laila, ʻaʻohe pono e hopohopo.

He aha nā ʻano MS e kū mai ana i nā keiki?

ʻO ke ʻano maʻamau o ka MS i nā keiki ʻo ia ka "Relapsing-Remitting MS (RRMS) ." Ma kahi o 98% o nā keiki i loaʻa i kēia ʻano. I kēia hihia, hiki koke mai nā hōʻailona (flare-up/relapse), mau no kekahi manawa, a laila emi a nalo loa paha (remission). Hiki iā lākou ke hoʻi hou mai ma hope o kekahi manawa. Ma kēia ʻano, hele mai nā hōʻailona a hele i ke ola o ke keiki.

ʻO kekahi ʻano ʻē aʻe ʻo ia ka 'Primary Progressive MS (PPMS)'.ʻAʻole nui kēia i nā keiki. ʻO ka mea e hana ʻia, ʻoi aku ka ʻino o nā hōʻailona i ka hala ʻana o ka manawa. ʻAʻole i emi ka hoʻomaikaʻi ʻana i nā wā ma waena.

He aha nā hōʻailona mua o MS i nā keiki?

I ka wā e ʻike ai i ka MS, nānā pono nā kauka i kēia mau hōʻailona mua:

• ʻO ka Neuritis Optic: He ʻano kēia e hōʻeha ai i kekahi a i ʻole nā ​​maka ʻelua, me ka nalowale o ka ʻike. ʻO ke kikoʻī, lilo ke aʻalolo optic i loko o ka maka i pehu. Hiki i kekahi mau keiki ke loli i ko lākou ʻike kala.
• ʻO ka Myelitis Transverse: ʻO kēia ka wā e hoʻoulu ai ka mumū ma kahi ʻāpana o ke kaula kuamoʻo i ka ʻeha, e ālai ana i nā hōʻailona aʻalolo. Hiki i kēia ke hana i nā hōʻailona e like me ka nāwaliwali o nā lālā, ka mae ʻana, a me ka hiki ʻole ke hele.

E noʻonoʻo, kāu keiki, e ʻōlelo kākou ʻo Kavindu kona inoa. I kekahi lā, i ka hoʻi ʻana mai o Kavindu mai ke kula mai, ʻōlelo ʻo ia, "E Māmā, ua mae koʻu mau wāwae." Ma hope o kekahi manawa, ua paʻakikī iā ia ke hele. Hiki paha kēia ma muli o ka Transverse Myelitis.

He aha nā hōʻailona maʻamau o MS i nā keiki?

Hiki ke ʻokoʻa nā hōʻailona o MS mai kēlā kanaka a kēia kanaka. ʻOiai i loko o ke keiki hoʻokahi, hiki ke ʻokoʻa nā hōʻailona mai kēlā lā a kēia lā. ʻAʻole e loaʻa i nā kānaka a pau kēia mau hōʻailona a pau, akā ʻo ka hapa iki wale nō e ʻike ʻia.

• ʻO ka numbness, tingling (paresthesia) : Hiki ke ʻike ʻia kēia manaʻo ma nā wahi e like me nā lima, nā wāwae, a me ka maka.
• Pōʻino
• Ka paʻakikī e hele a mālama paha i ke kaulike
• Luhi: ʻAʻole kēia he luhi maʻamau wale nō. He manaʻo ia o ka luhi me ka nānā ʻole i ka nui o kāu hiamoe.
• Nāwaliwali o nā ʻiʻo
• Nā haʻalulu/haʻalulu
• Nā pilikia me ka noʻonoʻo a i ʻole ka hoʻomanaʻo
• Nā pilikia ʻike: e like me ka ʻike maka pōwehiwehi a i ʻole ka ʻike pālua.

No ka mea wale nō he hoʻokahi a ʻelua paha o kēia mau hōʻailona kou, mai manaʻo he MS ia. Eia nō naʻe, inā hoʻomau kēia mau hōʻailona a i ʻole pilikia kāu keiki, he mea nui e ʻimi i ke aʻo lapaʻau.

He aha nā mea e hoʻomohala ai i ka MS i nā keiki?

ʻO ke kumu nui o MS ka demyelination . Ua kamaʻilio mākou ma mua e pili ana i ka ʻupena myelin. ʻO ka demyelination ka hōʻino ʻana i ka ʻupena myelin.

No kekahi kumu, kuhi hewa ka ʻōnaehana pale o kā mākou keiki i kēia ʻāpana olakino i kapa ʻia ʻo 'Myelin' he mea ʻino i ke kino. A laila hoʻomaka ia e hoʻouka iā ia. Hōʻino kēia hoʻouka i ka 'Myelin'. Hiki ke hana ʻia nā ʻōpala (i kapa ʻia hoʻi he 'lesions' a i ʻole 'plaques' e nā kauka) ma kēia mau wahi i hōʻino ʻia. Hiki ke ʻike ʻia kēia mau ʻōpala me nā scan e like me 'MRI (Magnetic Resonance Imaging)'.

Ke hōʻino ʻia ka myelin, ua hoʻopilikia ʻia ka hoʻoili ʻana o nā leka mai ka lolo i nā ʻāpana like ʻole o ke kino. ʻO ia ke kumu o nā hōʻailona o MS.

ʻAʻole maopopo i nā kānaka noiʻi ke kumu e hana hewa ai ka ʻōnaehana pale ma kēia ʻano.

He aha nā kumu pilikia no ka hoʻomohala ʻana o MS i nā keiki?

Ua ʻike ʻia aia kekahi mau mea e hoʻopilikia ai i ka makuahine i ka wā hāpai e hoʻonui i ka pilikia o ke keiki e hoʻomohala ana i ka MS:

• Ka ʻike ʻia ʻana i nā mea ʻawahia: No ka laʻana, ka ʻike ʻia ʻana i ka uahi lua, nā pesticides, a pēlā aku.
• Nā pae koko haʻahaʻa o ka wikamina D.
• Ka ʻike ʻia ʻana i kekahi mau maʻi viral: No ka laʻana, ʻo ka maʻi Epstein-Barr a i ʻole mononucleosis (i ʻike ʻia hoʻi ʻo ka maʻi honi).
• Ka momona.

No laila, he mea nui loa ke noho olakino i ka wā hāpai. ʻO ka hahai ʻana i nā ʻōlelo aʻoaʻo lapaʻau hiki ke hōʻemi i kēia mau pilikia.

He aha nā pilikia e hiki ke loaʻa mai ka MS i nā keiki?

Hiki i nā keiki ke loaʻa i kekahi mau pilikia ma muli o MS. ʻAʻole pinepine kēia mau mea e ʻike koke ʻia, a hiki ke hoʻopilikia wale iā lākou i ko lākou hiki ʻana i ka wā makua.

• Ka paʻakikī o ka hele wāwae me ke kōkua ʻole.
• Kaumaha a me ka Hopohopo.
• Ka paʻakikī i ka hana ʻana i nā hana kula.
• Ka hoʻonohonoho pono ʻole ʻana o nā lima.
• Ka paʻakikī i ka kaohi ʻana i ka mimi a i ʻole ka ʻōpala (incontinence).

ʻAʻole hoʻopilikia kēia mau mea a pau i kēlā me kēia keiki, akā he mea nui e makaʻala i kēia mau mea i hiki iā ʻoe ke loaʻa koke i ke kōkua inā pono.

Pehea e ʻike ai nā kauka i ka MS i nā keiki?

Hoʻomaopopo ke kauka i kahi keiki me MS ma ka hana ʻana i kahi hoʻokolohua kino, kahi hoʻokolohua neurological, a me kekahi mau hoʻokolohua kūikawā ʻē aʻe . I loko o kēia mau hoʻokolohua, e nīnau ke kauka iā ʻoe i nā nīnau e pili ana i nā hōʻailona o kāu keiki a inā paha ua loaʻa i kekahi o kou ʻohana ka maʻi.

Kōkua pū nā hoʻokolohua diagnostics i ka hoʻopau ʻana i nā kūlana ʻē aʻe i loaʻa nā hōʻailona like me MS. ʻO kēia mau hoʻokolohua:

• Nā hoʻāʻo koko a me nā hoʻāʻo mimi.
• Nā hoʻāʻo kiʻi e like me ke kiʻi MRI (Magnetic Resonance Imaging) (aia kekahi mau hoʻāʻo e nānā i nā aʻalolo o ka maka, e like me ka Optical Coherence Tomography).
• ʻO ke kui ʻana o ka lumbar:I loko o kēia, lawe ʻia kekahi o ke wai a puni ke kaula kuamoʻo a nānā ʻia.
• Hoʻāʻo Evoked Potential (EP): Ke ana kēia i ka wikiwiki o ka hele ʻana o nā leka ma o nā aʻalolo.

Ma muli o ke ʻano like o nā hōʻailona o MS me nā maʻi ʻē aʻe he nui, hiki ke lōʻihi ka manawa e ʻike ai i ke kūlana pololei. Hiki i kēia ke lilo i mea hoʻoluhi iki no nā mākua, a pono paha e kipa pinepine i ke kauka. Eia nō naʻe, i ka wā e hana ʻia ai kahi hōʻailona pololei, hiki ke mālama pono i kāu keiki a kōkua iā lākou e loaʻa kahi wā kamaliʻi hauʻoli a emi ʻole ka hoʻopilikia.

Hiki i nā keiki ʻōpio ke hoʻomaopopo i ka `MS`?

ʻAʻole ʻike ʻia nā hōʻailona o MS i ka wā hānau. No laila, he mea paʻakikī loa ka ʻike ʻia ʻana o kahi pēpē me MS. ʻIke ʻia nā hōʻailona i ka wā e ulu ana ke keiki. Hoʻomaka pinepine ke ʻano i ka wā ʻōpio. ʻO ka hapa pinepine, ʻike ʻia ka maʻi ma mua o 16 mau makahiki.

Pehea e mālama ʻia ai ka MS i nā keiki?

ʻO ke ʻano nui o ka lāʻau lapaʻau no ka relapsing-remitting MS (RRMS), ka mea maʻamau i nā keiki, ʻo ia ka lāʻau lapaʻau hoʻololi maʻi (DMT). Hoʻomalu kēia mau lāʻau DMT i ka holomua o ka maʻi a hoʻemi i ke alapine o nā hōʻailona. ʻO kahi lāʻau i ʻae ʻia e ka FDA (Food and Drug Administration) he pila i kapa ʻia ʻo fingolimod . Manaʻo ʻia no nā keiki he 10 mau makahiki a ʻoi. Ke aʻo ʻia nei nā DMT ʻē aʻe no ka hoʻohana ʻana i nā keiki.

Eia kekahi, mālama pū nā kauka i nā hōʻailona kikoʻī o ke keiki. Hiki i kēia mau mea ke komo pū me:

• Hoʻōla Hana: Kōkua i nā hana o kēlā me kēia lā.
• Hoʻōla Kino: Kōkua i ka hoʻomohala ʻana i ka ikaika o ke kino a me ke kaulike.
• Lapaʻau ʻŌlelo: Inā pilikia ʻoe i ka ʻōlelo ʻana a i ʻole ke ale ʻana.
• Nā hoʻokolohua a me nā lāʻau lapaʻau Neuropsychological: Kōkua me nā mea e like me ka hoʻomanaʻo, ka nānā ʻana, a me ke aʻo ʻana.

Inā ua hoʻopilikia ka maʻi i ka hoʻomanaʻo a me ka noʻonoʻo ʻana o ke keiki (hana noʻonoʻo), pono paha ke kākoʻo hou aku ma ke kula.

Loaʻa paha iā ʻoe ka manawa kūpono e komo i nā hoʻokolohua lapaʻau e hoʻāʻo ai i nā lāʻau lapaʻau hou. E haʻi aku kāu kauka iā ʻoe i nā mea hou aʻe e pili ana i kēia.

Āhea wau e ʻike ai i ke kauka o kaʻu keiki?

Inā haʻi kāu keiki iā ʻoe e pili ana i ka mae ʻana o ka ʻike, nā loli o ka ʻike, a i ʻole kekahi mau hōʻailona ʻē aʻe, he mea nui e kamaʻilio koke me ke kauka o kāu keiki. ʻOi aku ka maikaʻi o ka ʻike mua ʻana i ka MS. Hiki i nā kauka ke nānā i kāu keiki a hoʻoholo i ke ala hana maikaʻi loa no ka hōʻoia ʻana.

Ma hope o ka ʻike ʻia ʻana o ka maʻi, pono ʻoe a i ʻole kāu keiki e hoʻomaopopo i ka hui lapaʻau inā ʻike ʻia kekahi mau hōʻailona hou a i ʻole inā e ʻoi koke aʻe ka ʻino (flare-up).

He aha ka wā e hiki mai ana no nā keiki me ka MS i nā wā kamaliʻi?

Hiki i nā keiki i loaʻa i ka MS ke loaʻa kahi hiʻohiʻona maikaʻi no ka wā e hiki mai ana. Aia nā lāʻau lapaʻau e hōʻemi i ka pinepine a me ke koʻikoʻi o nā hōʻailona. I mea e pale ai i ke kīnā lōʻihi, pono e mālama ʻia ka maʻi i ke ola holoʻokoʻa. Pono kāu keiki e hālāwai me kā lākou hui lapaʻau MS i nā manawa a pau o ko lākou ola.

Hiki i kekahi mau keiki me ka relapsing-remitting MS (RRMS) ke loaʻa i kahi maʻi i kapa ʻia ʻo secondary progressive MS (SPMS) i ka wā makua. ʻO kēia ka wā e ʻoi mālie ai nā hōʻailona. Eia nō naʻe, ua hōʻike ʻia e ka noiʻi he lohi ka holomua o ka maʻi o ka poʻe i ʻike ʻia me MS i ka wā kamaliʻi ma mua o ka poʻe i loaʻa iā SPMS i ka wā makua.

E hoʻopilikia anei ʻo MS i ke ola kula o kaʻu keiki?

Ma muli o ka hiki i ka MS ke hoʻopilikia i ka hoʻomanaʻo a me nā mākau noʻonoʻo o ke keiki (hana noʻonoʻo), hiki i ke keiki ke kū i nā pilikia i ka hana kula. No laila, he manaʻo maikaʻi ke loaʻa i hoʻokahi hoʻokolohua neuropsychological. Ma hope o kēlā, he mea nui e kamaʻilio pinepine me nā kumu a ke keiki. Hiki iā ʻoe ke loaʻa ke kākoʻo e kōkua i ke keiki e neʻe i mua i ko lākou wikiwiki ponoʻī a i kā lākou mau pahuhopu hoʻonaʻauao.

He nui nā keiki me MS e launa maikaʻi me nā keiki ʻē aʻe o ko lākou mau makahiki. Hiki iā lākou ke pāʻani a komo i nā hana e like me nā keiki ʻē aʻe.

Inā he mau nīnau kāu, e aʻo aku ke kauka iā ʻoe inā palekana kekahi mau hana no ka pēpē.

Ma ke ʻano he makua, hopohopo nui paha ʻoe ke ʻike ʻoe ua loaʻa i kāu keiki ka MS. He mea maʻamau kēlā. Akā e hoʻomanaʻo, ʻo ka hapa nui o nā hihia o ka MS e hoʻopilikia ana i nā keiki he relapsing-remitting (RRMS). ʻO ke ʻano kēia e hele mai a hele aku nā hōʻailona. Hiki i ke kauka ke hana i kahi hoʻolālā lapaʻau e hōʻemi i ka alapine a me ke koʻikoʻi o nā hōʻailona. ʻOiai he maʻi ola ʻole ka MS me ka ʻole o ka lāʻau lapaʻau, inā mālama pono ʻia, hiki iā ʻoe ke kōkua i kāu keiki e pāʻani a aʻo me ka liʻiliʻi o nā hoʻopilikia.

Leka Lawe-Home

• ʻO ka MS i nā wā kamaliʻi kahi kūlana i hoʻouka ai ka ʻōnaehana pale i ka myelin i loko o ka ʻōnaehana nerve.
• ʻOkoʻa nā hōʻailona, ​​​​a hiki ke komo pū me nā pilikia ʻike, ka maneʻo, ka paʻakikī i ka hele wāwae, a me ka luhi.
• Hiki ke kāohi ʻia ka maʻi me ka ʻike mua ʻana a me ka mālama ʻana e like me ke ʻano `DMT`.
• Pono paha ke keiki i ke kākoʻo hou aku ma ke kula a ma ke ola o kēlā me kēia lā, akā hiki i ka hapa nui o nā keiki ke ola i kahi ola maʻamau.
• Inā loaʻa i kāu keiki kekahi mau hōʻailona ʻē, e ʻimi koke i ke kōkua lapaʻau. Mai hopohopo, me ka ʻike kūpono a me ke kākoʻo, hiki iā ʻoe ke hoʻoponopono i kēia kūlana.

`MS no ke kamaliʻi, Multiple Sclerosis, ʻōnaehana nerve, Myelin, ʻōnaehana pale maʻi, nā hōʻailona, ​​​​​​lāʻau lapaʻau