Pehea e ʻike ai iā Rett Syndrome

Anter

• Nā hiʻohiʻona o Rett Syndrome
• Pehea e hana ʻia ai ke kuhi
• Manaʻo ola
• He aha ke kumu o Rett Syndrome
• Hoʻomaʻo no Rett Syndrome

ʻO Rett's Syndrome, i kapa ʻia hoʻi ʻo cerebro-atrophic hyperammonemia, kahi maʻi maʻi laha ʻole e hoʻopili i ka ʻōnaehana a pili i nā kaikamahine wale nō.

Hoʻomaha nā keiki me Rett Syndrome i ka pāʻani ʻana, lilo i kaʻawale a nalowale i ko lākou ʻike akamai, e like me ka hele wāwae ʻana, ʻōlelo ʻana a i ʻole ke neʻe ʻana i ko lākou mau lima, e ala ana i nā neʻe lima lima ʻole i ʻano like ʻole i ka maʻi.

ʻAʻohe lāʻau hoʻōla o Rett Syndrome akā hiki ke kāohi ʻia me ka hoʻohana ʻana i nā lāʻau e hōʻemi i ka hopu ʻana o ka maʻi epileptic, spasticity a me ka hanu ʻana, no ka laʻana. Akā kōkua nui ka hoʻoikaika kino a me ka stimomotor psychomotor, a pono e hana ʻia, ʻoi aku ka maikaʻi, i kēlā me kēia lā.

Nā hiʻohiʻona o Rett Syndrome

ʻOiai nā ʻōuli e kahea nui ka manaʻo o nā mākua ma hope wale o 6 mau mahina o ke ola, he hyponia ka pēpē me Rett Syndrome, a hiki ke ʻike ʻia e nā mākua a me ka ʻohana, ma ke ʻano he pēpē 'maikaʻi' a maʻalahi hoʻi e mālama o ka.

Kūkulu kēia maʻi i nā hanana 4 a i kekahi manawa hōʻea wale ka ʻike ma kahi o 1 mau makahiki o ka makahiki, a i ʻole ma hope, e kaukaʻi ʻia i nā ʻōuli a kēlā me kēia keiki e hōʻike ai.

Mahele mua, aia ma waena o 6 a me 18 mau mahina o ke ola, a aia:

• Ke kū nei i ka ulu ʻana o ke keiki;
• ʻAʻole pili ke poʻo o ke poʻo i ka piʻo ulu ulu maʻamau;
• Hoemi i ka hoihoi i nā poʻe ʻē aʻe a i ʻole nā ​​keiki, me kahi ʻano e hoʻokaʻawale iā lākou iho.

Pae ʻelua, mai ka makahiki 3 a hiki ke hala i mau pule a i ʻole mau mahina.

• Nui ka uē o ke keiki, no ke kumu ʻole hoʻi;
• Noho mau ke keiki i ka ukiuki;
• Hōʻike i nā neʻe lima hou;
• Hōʻike nā hoʻololi hanu, me ka hanu i kū i ka lā, kahi manawa o ka hoʻonui ʻana i ka hanu hanu;
• ʻO ka hopu ʻana i ka maʻi a me nā hoʻouka ʻana o ka maʻi epilepsy a puni ka lā;
• Hiki ke maʻa mau nā maʻi hiamoe;
• ʻO ke keiki nāna i kamaʻilio, hiki iā ia ke hoʻōki i ke kamaʻilio pau ʻana.

Māhele ʻekolu, aia ma kahi o 2 a me 10 mau makahiki i hala.

• Aia paha kekahi mau hoʻomaikaʻi ʻana i nā ʻōuli i hōʻike ʻia a hiki i ke keiki ke hoʻi i ka hōʻike ʻana i ka hoihoi i kekahi poʻe ʻē aʻe;
• ʻIke ka paʻakikī i ka neʻe ʻana o ke kumu, aia ka paʻakikī i ke kū ʻana i luna;
• Aia paha ka spasticity;
• Hoʻolālā ka Scoliosis e hoʻopilikia i ka hana o ka māmā;
• He mea maʻamau ka wili ʻana i kou mau niho i ka wā hiamoe;
• Hiki ke maʻamau ka hānai ʻana a he mea maʻamau hoʻi ke kaumaha o ke keiki, me ka hoʻonui iki ʻana o ka paona;
• Lilo paha ke keiki i kona hanu, ale i ka ea a nui ka lawā.

ʻAha ʻehā, i hana ʻia ma kahi o 10 mau makahiki i hala.

• ʻO ka nalowale o ka neʻe iki a me ka ʻino o ka scoliosis;
• Lilo ka hemahema i ka noʻonoʻo;
• ʻO nā keiki i hiki ke hele wāwae ua nalo i kēia hiki a pono i kahi noho huila.

Hiki i nā keiki i hiki ke aʻo i ka hele wāwae ke loaʻa i kekahi mau pilikia i ka neʻe ʻana a me ka pae maʻamau a hoʻi i nā ʻanuʻu mua i hope. Hoʻohui ʻia, ʻaʻole hiki iā lākou ke hele i kahi a me kā lākou hele wāwae me he mea ʻole lā no ka mea ʻaʻole hele ʻo ia e launa me kekahi kanaka, a i ʻole e kiʻi i nā mea pāʻani, no ka laʻana.

Pehea e hana ʻia ai ke kuhi

?????? Hana ʻia ke kuhi e ka neuropediatrician nāna e kālailai i kēlā me kēia keiki i ke kikoʻī, e like me nā hōʻailona i hōʻike ʻia. No ka hōʻoia ʻana, pono e nānā ʻia kēia mau ʻano:

• Kūkulu maʻamau a hiki i 5 mau mahina o ke ola;
• Ka nui o ke poʻo maʻamau i ka wā hānau, akā ʻaʻole ia e ukali i ke ana kūpono ma hope o 5 mau mahina o ke ola;
• Ka nalowale o ka hiki ke hoʻoneʻe i nā lima ma kahi o ka makahiki 24 a 30 mau mahina, e hāpai ana i nā neʻe ʻole e kaohi ʻia e like me ka wili ʻana a i ʻole ka lawe ʻana i kou mau lima i kou waha.
• Hoʻoki ke keiki i ka launa ʻana me nā poʻe ʻē aʻe i ka hoʻomaka o kēia mau ʻōuli;
• Ka nele o ka hoʻonohonoho ʻana o nā neʻe o ke kumu a me ka hele wāwae ʻole ʻana.
• ʻAʻole kamaʻilio ke keiki, ʻaʻole hiki ke hōʻike iā ia iho ke makemake ʻo ia i kekahi mea a maopopo ʻole ke kamaʻilio aku mākou iā ia;
• Hoʻoikaika lohi i ka hoʻomohala ʻana, me ka noho ʻana, kolo ana, kamaʻilio ʻana a me ka hele wāwae ʻana ma hope o ka mea i manaʻo ʻia.

ʻO kekahi ala hou aʻe pono e ʻike inā pili maoli kēia maʻi i kahi hoʻokolohua kūlohelohe no ka mea ma kahi o 80% o nā keiki me ka Rett Syndrome maʻamau i hoʻololi i ka ʻohana MECP2. ʻAʻole hiki ke hana i kēia hoʻokolokolo e SUS, akā ʻaʻole hiki ke hōʻole ʻia e nā hoʻolālā olakino pilikino, a inā kū kēia, pono ʻoe e faila i kahi hoʻopiʻi.

Manaʻo ola

Hiki i nā keiki i hōʻoia ʻia me Rett Syndrome ke ola i kahi manawa lōʻihi, i hala i ka 35 o nā makahiki, akā hiki ke ʻeha i ka make koke i ka hiamoe ʻana, ʻoiai he pēpē lākou. ʻO kekahi mau hanana i makemake i nā pilikia koʻikoʻi i hiki ke make me ka loaʻa ʻana o nā maʻi, nā maʻi hanu e ulu ana ma muli o ka scoliosis a me ka hoʻonui maikaʻi ʻana o ka paru.

Hiki i ke keiki ke hele i ke kula a hiki ke aʻo i kekahi mau mea, akā kūpono, pono e hoʻohui ʻia i loko o ka ʻike kūikawā, kahi e huki ʻole ai ka nānā ʻana i kahi mea, kahi e hōʻino ai i kāna pilina me nā poʻe ʻē aʻe.

He aha ke kumu o Rett Syndrome

ʻO Rett Syndrome kahi maʻi maʻi a ʻo nā keiki maʻamau ka mea hoʻokahi wale nō i ka ʻohana, ke ʻole he kaikaina māhoe ko lāua, ʻo ia nō paha ka maʻi like. ʻAʻole pili kēia maʻi i kekahi hana i hana ʻia e nā mākua, a no laila, ʻaʻole pono lākou e lawehala.

Hoʻomaʻo no Rett Syndrome

Pono e mālama ʻia ka lāʻau lapaʻau e ke kauka maʻi a hiki i ka piha ʻana o ke keiki i 18 mau makahiki, a pono e ukali ʻia e kahi loio a i ʻole neurologist ma hope o kēlā.

Pono e kūkākūkā i kēlā me kēia 6 mahina a me nā hōʻailona koʻikoʻi, ke kiʻekiʻe, ke kaumaha, ka pololei o ka lāʻau, ka nānā ʻana i ka ulu ʻana o ke keiki, nā loli i ka ʻili e like me ke kū ʻana o nā ʻeha decubitus, ʻo ia nā bedores hiki ke lilo i maʻi, hiki ke ʻike ʻia i loko o lākou. ka makaʻu o ka make. ʻO nā ʻaoʻao ʻē aʻe he mea nui paha ka loiloi i ka hoʻomohala ʻana a me ka ʻōnaehana hanu a me ka ʻōnaehana.

Pono e hana i ka physiotherapy i loko o ke ola o ke kanaka me Rett Syndrome a pono no ka hoʻomaikaʻi ʻana i ke kani, ke kūlana, ka hanu ʻana a me nā ʻenehana e like me Bobath hiki ke hoʻohana ʻia e kōkua i ka ulu ʻana o ke keiki.

Hiki ke mālama ʻia nā kau hoʻouluulu psychomotor ma kahi o 3 mau manawa o ka pule a hiki ke kōkua i ka hoʻomohala ʻana o ka kaʻa, hoʻemi i ke koʻikoʻi o scoliosis, ka hoʻomalu drool a me ka launa pū ʻana, e laʻa me. E hiki i ka mea hoʻoponopono ke hōʻike i kekahi mau hana i hiki ke hana ʻia ma ka home e nā mākua i mea e hana ai ka neurological a me ka stimulus motor i kēlā me kēia lā.

ʻO ka loaʻa ʻana o kahi kanaka me Rett Syndrome ma ka home kahi hana luhi a paʻakikī hoʻi. Hiki i nā mākua ke lilo i ke kaumaha nui a no kēia kumu e aʻo ʻia paha lākou e ukali ʻia e nā psychologists i hiki ke kōkua i ka hana me ko lākou naʻau.