Pehea e ʻike ai a mālama ai iā Leigh Syndrome

Anter
ʻO Leigh's Syndrome kahi maʻi maʻi laha ʻole e hiki ai i ka luku holomua o ka ʻōnaehana nīnūnē, a pēlā e hoʻopili ai i ka lolo, nā iwi kuamoo a me nā aʻa optic, no ka laʻana.
ʻO ka mea maʻamau, ʻike ʻia nā ʻōuli mua ma waena o 3 mau mahina a me 2 mau makahiki o ka makahiki a komo pū me ka nalo ʻana o ka mākau kaʻa, ka luaʻi a me ka nalo ʻana o ka makemake ʻole. Eia nō naʻe, i nā hihia kakaikahi loa, hiki i kēia maʻi ke hōʻike wale ʻia i nā mākua wale nō, ma kahi o 30 mau makahiki, e holo lohi nei i mua.
ʻAʻohe lāʻau o Leigh's Syndrome, akā hiki ke kāohi ʻia kona mau ʻōuli me ka lāʻau a me ke olakino hoʻoikaika kino e hoʻomaikaʻi ai i ke ola o ke keiki.

He aha nā hōʻailona nui
ʻO nā ʻōuli mua o kēia maʻi e hōʻike pinepine ʻia ma mua o ka makahiki 2 me ka nalo ʻana o nā hiki i loaʻa mua. No laila, kaukaʻi ʻia i ka makahiki o ke keiki, hiki i nā ʻōuli mua o ka maʻi ke komo pū me ka nalo ʻana o nā hiki e like me ka paʻa ʻana i ke poʻo, ka omo ʻana, ka hele ʻana, ke kamaʻilio ʻana, ka holo ʻana a me ka ʻai ʻana paha.
Eia kekahi, ʻo nā hōʻailona maʻamau ʻē aʻe e pili pū me:
- Ka nele o ka makemake;
- Luai pinepine;
- Hoʻonāukiuki nui loa;
- Huikau;
- Hoʻolālā hoʻomohala;
- Ka paʻakikī i ka loaʻa ʻana o ke kaumaha;
- Hoʻoemi ka ikaika i nā lima a me nā wāwae;
- Haʻalulu nā mākala a me nā spasms;
Me ka holomua o ka maʻi, he maʻa mau ia e hoʻonui a me ka waikawa lactic i loko o ke koko, a ke nui ia, hiki ke hoʻopili i ka hana o nā meaola e like me ka puʻuwai, nā māmā a me nā puʻupaʻa, e pilikia ana i ka hanu ʻana a hoʻonui paha i ka puʻuwai, laʻana.
Ke hōʻike ʻia nā ʻōuli i ke ʻano makua, aneane pili mau nā ʻōuli mua i ka hihiʻo, e like me ke ʻano o kahi papa keʻokeʻo e hōʻino i ka hihiʻo, ka nalowale holomua o ka ʻike a me ka makapō makapō (ka nalowale o ka hiki ke hoʻokaʻawale ma waena o ka ʻōmaʻomaʻo a me ka ʻulaʻula). I ka poʻe mākua, e lohi iki ka holomua o ka maʻi a, no laila, nā spasms muscle, paʻakikī i ka hoʻonohonoho ʻana i nā neʻe a me ka nalo ʻana o ka ikaika e hoʻomaka wale nō ma hope o ka makahiki 50.
Pehea e hana ai i ka lāʻau
ʻAʻohe ʻano kikoʻī o ka mālama ʻana no Leigh's Syndrome, a pono e hoʻopili ka pediatrician i ka lāʻau i kēlā me kēia keiki a me kā lākou mau ʻōuli. No laila, koi ʻia kahi hui o nā loea e mālama i kēlā me kēia hōʻailona, e like me ka mea maʻi maʻi maʻi, kahi neurologist, kahi physiotherapist a me nā loea ʻē aʻe.
Eia nō naʻe, he lāʻau lapaʻau i hoʻohana ākea ʻia a maʻamau i ʻaneʻane nā keiki āpau me ka wikamina B1, no ka mea kōkua kēia huaola i ka pale ʻana i nā membrane o nā neurons i loko o ke kikowaena waena, hoʻolohi i ka ulu ʻana o ka maʻi a hoʻomaikaʻi i kekahi mau ʻōuli.
No laila, ʻano loli ka wānana o ka maʻi, kaukaʻi ʻia i nā pilikia i loaʻa ʻia i kēlā me kēia keiki, eia nō naʻe, he haʻahaʻa ke kali ʻana o ke ola no ka mea ʻo nā pilikia nui loa e hōʻiliʻili i ke ola ma mua o ka ʻōpio.
He aha ke kumu o ka maʻi maʻi
Hoʻokumu ʻia ʻo Leigh's Syndrome e kahi maʻi genetical i hiki ke hoʻoilina ʻia mai ka makuakāne a me ka makuahine, ʻoiai inā ʻaʻohe maʻi o nā mākua akā aia kekahi mau hihia ma ka ʻohana. No laila, paipai ʻia i ka poʻe me nā hihia o kēia maʻi i loko o ka ʻohana e hana i nā ʻōlelo aʻoaʻo kūlohelohe ma mua o ka hāpai ʻana e ʻike i ka manawa kūpono o ke keiki me kēia pilikia.