Moebius Syndrome: he aha ia, nā hōʻailona a me ka lāʻau

Anter

• Nā hōʻailona nui a me nā ʻano
• Pehea e hōʻoia ai i ke kuhi
• Pehea e hana ai i ka lāʻau

ʻO ka maʻi Moebius kahi maʻi laha ʻole kahi i hānau ʻia ai ke kanaka me ka nāwaliwali a i ʻole nā ​​lōlō i kekahi aʻa cranial, keu hoʻi i nā hui VI a me VII, kahi mea paʻakikī, a i ʻole hiki ʻole, ke neʻe pololei i nā mākala o ka maka a me nā maka. paʻakikī e hana i nā hiʻohiʻona helehelena.

ʻAʻohe kumu kikoʻī o kēia ʻano maʻi a kū aʻe mai kahi hoʻololi i ka wā hāpai, a hānau ʻia ke keiki me kēia mau pilikia. Eia hou, ʻaʻole ia he maʻi holomua, ʻo ia hoʻi ʻaʻole ia e maikaʻi i ka holo ʻana o ka manawa. No laila, he mea maʻamau no ke keiki e aʻo e hana me kāna mau kīnā mai kona wā liʻiliʻi, a hiki ke alakaʻi i kahi ola maʻamau.

ʻOiai ʻaʻohe lāʻau lapaʻau no kēia maʻi, hiki ke mālama ʻia kāna mau hōʻailona a me nā pilikia me kahi hui multidisciplinary e kōkua i ke keiki e hoʻomaʻa i nā kūpikipiki, a hiki i kona ulu ʻana i kona kūʻokoʻa.

Nā hōʻailona nui a me nā ʻano

Hiki ke ʻokoʻa nā ʻōuli a me nā ʻano o Moebius maʻi mai ke keiki a ke keiki, kaukaʻi ʻia i nā ʻalalā cranial. Eia nō naʻe, i nā manawa he nui, maʻamau no:

• Ka paʻakikī e minoʻaka ana, e ʻūlū ana a i ʻole e hāpai ana i nā kuʻemaka;
• Nā neʻe maka maʻamau ʻole;
• Pilikia i ka ale ʻana, ka nau ʻana, ka omo ʻana a i ʻole ke kani ʻana o nā leo;
• Ka hiki ʻole ke hoʻopuka hou i nā hiʻohiʻona o ke alo;
• Malformations o ka waha, e like me ka lehelehe lepe a i ʻole ka pā hāle.

Hoʻohui ʻia, ʻo nā keiki i hānau ʻia me kēia maʻi maʻi, loaʻa iā lākou kekahi mau hiʻohiʻona hiʻohiʻona e like me ka liʻiliʻi o ka auwae maʻamau, ka waha liʻiliʻi, ke alelo pokole a me nā niho hewa.

I kekahi mau hihia, i ka hoʻohui i ka maka, hiki i ka maʻi Moebius ke hoʻopili i nāʻiʻo o ka umauma a i ʻole nā ​​lima.

Pehea e hōʻoia ai i ke kuhi

ʻAʻohe hōʻike a hōʻike paha i hiki ke hōʻoia i ka maʻi Moebius, akā naʻe, hiki i ka pediatrician ke hōʻea i kēia ʻike ma o nā ʻano a me nā hōʻailona i hōʻike ʻia e ke keiki.

Eia nō naʻe, hiki ke hana ʻia i nā hoʻokolohua ʻē aʻe, akā e pale wale no nā maʻi ʻē aʻe i loaʻa nā ʻano like, e like me ka maʻi lōlō o ka maka.

Pehea e hana ai i ka lāʻau

Pono e hoʻoponopono mau ʻia ka lāʻau no Moebius Syndrome i nā ʻano kikoʻī a me nā loli o kēlā me kēia keiki, no laila, he mea maʻamau ia e hana pū me kahi hui multidisciplinary e hui pū me nā loea e like me nā neuropediatricians, nā mea haʻi ʻōlelo, nā kauka lāʻau, nā psychologists, nā limahana limahana. a hiki i nā nutristist, hiki ke pane i nā pono a ke keiki.

ʻO kahi laʻana, inā nui ka paʻakikī e hoʻoneʻe i nā mākala o ka maka, e koi ʻia paha e ʻoki ʻia e hana i kahi nerve mai kahi ʻē aʻe o ke kino, e koi ana i kahi kaukō. I mea e kōkua ai i ke keiki e lanakila i kāna mau kīnā, he mea nui ka mea hoʻoponopono hana.