Ke hopohopo nei ʻoe no ke ʻano o ka helehelena o kāu keiki liʻiliʻi? E kamaʻilio kākou e pili ana i ka Binder Syndrome!

I ka wā i hānau ʻia ai kāu keiki liʻiliʻi, ua ʻike anei ʻoe i kekahi mau loli iki i ke ʻano o ko lākou helehelena? I kekahi manawa, he pālahalaha iki paha ko lākou ihu, a ʻaʻole paha i kūpono ko lākou lehelehe luna. He mea maʻamau no ka makuahine a makua paha ke makaʻu iki i ka wā e ʻike ai lākou i kahi mea e like me kēia. Akā, mai hopohopo, i kēia lā e kamaʻilio mākou e pili ana i kahi maʻi e hōʻike ana i nā hōʻailona like, akā ʻaʻole maʻamau loa, i kapa ʻia ʻo Binder Syndrome.

He aha ka Binder Syndrome? I ka pōkole...

He maʻi laha ʻole ka maʻi Binder syndrome, he maʻi hānau hānau ia e kū mai ana i ka wā hānau. Hōʻike ʻia ia e nā iwi ma waenakonu o ka maka, ʻoiai ka ihu a me ka ʻāwae luna, ʻaʻole i ulu pono. Ua like ia me ke ʻano o ke kūkulu pono ʻole ʻia ʻana o kekahi mau paia o kahi hale. Hiki i kēia ke hoʻololi iki i ke ʻano o ka maka o ke pēpē.

E noʻonoʻo e pili ana i ia mea, ua hoʻohālikelike ʻia ko kākou ihu a me ka lehelehe luna ma muli o nā iwi ma lalo. No laila, ke pau ka ulu ʻana o kēlā mau iwi, loli ko lākou ʻano. Hiki i kekahi mau keiki ke paʻakikī i ka hanu ʻana ma muli o kēia ʻano, a hiki nō hoʻi iā lākou ke pilikia i ka ʻai ʻana, ʻoiai i ka wā e hānai waiū ai . Akā, ʻo ka nūhou maikaʻi, aia kahi lāʻau no kēia. ʻO ka maʻamau, i ka wā e ʻelemakule iki ai ke keiki, ʻo ia hoʻi, i ka wā e hiki ai lākou i ka wā ʻōpio (ma waena o nā makahiki 15-19), hiki ke hoʻoponopono hou ʻia kēia mau iwi a hiki ke hoʻihoʻi ʻia ke ʻano o ka maka ma o ke ʻoki maka a me ka ʻāwae (maxillofacial surgery) .

Aia kekahi mau inoa ʻē aʻe no ka Binder Syndrome?

ʻAe, hoʻohana nā kauka i kekahi manawa i nā inoa ʻē aʻe no kēia maʻi. He mea maikaʻi ke ʻike no ka mea e lohe paha ʻoe i kēia mau inoa:

• ʻAno Binder - ʻO kēia kekahi inoa ʻē aʻe no ka maʻi Binder.
• ʻO ka dysplasia nasomaxillary ʻano mea hoʻopaʻa
• ʻO ka dysplasia Maxillonasal
• ʻO ka hypoplasia nasomaxillary

ʻOiai paha he mea paʻakikī iki kēia mau inoa, ua like ke ʻano o lākou a pau.

Pehea ka maʻamau o kēia ʻano i kapa ʻia ʻo Binder Syndrome?

He ʻano maʻi laha ʻole kēia. Wahi a kekahi mau hōʻike, ʻike ʻia kēia ʻano ma lalo o hoʻokahi i loko o 10,000 mau pēpē hānau hou. No laila, mai hopohopo i kēia. Akā, ʻoiai he mea laha ʻole ia, he mea nui e makaʻala i ia mea.

He aha nā hōʻailona o ka Binder Syndrome?

ʻO ke ʻano nui o kēia maʻi, ʻo ia ka nele o ka ulu ʻana ma waenakonu o ka maka . ʻO ka hopena, hiki i ka maka o ke keiki ke hōʻike i nā loli penei:

• Lilo ka ihu i pālahalaha, a lilo ka lehelehe luna i pālahalaha . Hiki ke nānā aku me he mea lā ua piholo ka ihu i loko.
• Ke puka aku nei ka ʻāwae lalo i mua.Penei ke ʻano. Hiki mai kēia ʻano no ka mea e hele ana ka ʻāwae luna i loko a hele mai ka ʻāwae lalo i mua.
• ʻAʻole kūpono nā niho o luna a me lalo i kekahi i kekahi (ʻo ia hoʻi, malocclusion) . Hiki i kēia ke hoʻopilikia i ka wā e ʻai ana a e kamaʻilio ana.
• He ʻano huinakolu a he mahina paha nā puka ihu .

ʻO kēia nā hōʻailona maʻamau. Eia nō naʻe, eia kekahi, hiki iā ʻoe ke ʻike i kēia mau hōʻailona ma nā hihia kakaikahi :

• Lepe māwae .
• Nā kīnā puʻuwai hānau .
• Ka hemahema o ka lohe .
• Ke kīnā noʻonoʻo .
• Nā ʻano kīnā o ka iwi kuamoʻo .
• Strabismus a i ʻole nā ​​​​maka keʻa .

ʻAʻole nā ​​keiki a pau e loaʻa kēia mau hōʻailona a pau. Loaʻa paha i kekahi mau keiki nā hōʻailona maʻamau wale nō.

No ke aha e kū mai ai ka Binder Syndrome? He aha nā kumu?

ʻO kaʻoiaʻiʻo, ʻaʻole i ʻike pono nā loea i ke kumu o kēia . ʻO ka hapa nui o ka manawa, loaʻa i nā keiki kēia maʻi me ke kumu ʻole.

Eia nō naʻe, ʻoiai he nui nā keiki i kekahi mau ʻohana i loaʻa i kēia maʻi, ua manaʻo ʻia he mau kumu hoʻoilina paha, ʻo ia hoʻi, kahi mana hoʻoilina . Eia naʻe, ʻaʻole i hōʻoia paʻa ʻia kēia.

Eia kekahi, manaʻoʻiʻo nā kānaka noiʻi he nui nā kumu kaiapuni e pāʻani pū kekahi i kekahi. ʻO ia mau mea:

• Ka hoʻohana ʻana o nā makuahine i ka waiʻona i ka wā hāpai.
• ʻO ka ʻike ʻia ʻana i kekahi mau lāʻau lapaʻau i ka wā hāpai. ʻO nā laʻana e komo pū me ka phenytoin anti-epileptic (Dilantin®, Phenytek®) a me ka warfarin hoʻokahe koko (Coumadin®, Jantoven®). (Pono e lawe ʻia kēia mau lāʻau lapaʻau ma lalo o ka nānā ʻana o ke kauka inā pono, akā pono e mālama pono ʻia i ka wā hāpai.)
• Ka nele o ka wikamina K i ka wā hāpai.
• ʻEha i ke poʻo a i ʻole ka maka i ka wā hānau.

ʻO kēia nā kumu pilikia i ʻike ʻia i kēia manawa.

Pehea e ʻike ai nā kauka i ka Binder Syndrome?

Hoʻohālua mua nā kauka i kēia kūlana ma ka nānā ʻana i ke ʻano o ka maka o ke pēpē . A laila, no ka hōʻoia a kāpae paha i kēlā kānalua, hana lākou i nā hoʻokolohua kūikawā e hiki ke ʻike maopopo i ke ʻano o ka iwi o ka maka . Ua kapa ʻia kēia mau mea:

• Nā scan CT
• Nā Kiʻi MRI (MRI)
• Nā scan ultrasound (ultrasounds)

Ma o kēia mau scan, hiki iā mākou ke ʻike pololei i nā hemahema o ka ulu ʻana o nā iwi maka.

He aha nā lāʻau lapaʻau no ka Binder Syndrome?

ʻOkoʻa ka lāʻau no kēia mai kekahi keiki a i kekahi keiki, a hilinaʻi nō hoʻi i ke koʻikoʻi o nā hōʻailona.He ʻokoʻa ia. ʻElua mau ʻano lapaʻau nui:

1. Mālama Orthodontic:

• ʻO kēia ke kau ʻana i nā uea ('braces') i loko o ka waha e hoʻoponopono pono i ka ʻāwae a me nā niho .
• I kekahi manawa, inā ʻaʻole koʻikoʻi loa nā hōʻailona, ​​​​ua lawa paha kēia mālama niho wale nō.
• I nā hihia ʻē aʻe, pono e hana ʻia kēia lāʻau ma mua a ma hope paha o ke ʻoki ʻana.

2. ʻOki kino:

• ʻO kēia ke ʻano lapaʻau nui. Hana ʻia kēia mau ʻoki e kahi kauka lapaʻau craniofacial (he kauka loea i ka iwi poʻo a me ka maka) .
• Ma kēia, hoʻololi hou ʻia ke ʻano o ka ihu me ka hoʻohana ʻana i ka iwi, ke cartilage, a i ʻole nā ​​mea synthetic i lawe ʻia mai ke kino ponoʻī o ke keiki . Ua kapa ʻia hoʻi kēia he rhinoplasty .
• Eia kekahi, hiki ke hana ʻia kekahi ʻano hana ʻoki i kapa ʻia ʻo Le Fort I a i ʻole II osteotomy e lawe mai i ka ʻāwae luna i ke kūlana kūpono. He mau ʻoki paʻakikī iki kēia, akā hiki i nā kauka akamai ke hana pono iā lākou.
• ʻO ka maʻamau, ʻōlelo nā kauka e kali a hiki i ka pau ʻana o ka ulu ʻana o nā iwi maka o ke keiki ma mua o ka hana ʻana i kēia ʻoki kino, ʻo ia hoʻi ma waena o 15 a me 19 mau makahiki. ʻO kēia no ka mea inā hana ʻia ma mua o kēlā manawa, hiki ke hoʻi hou mai nā pilikia i ka wā e hoʻomau ai ka ulu ʻana o nā iwi.

He mea nui: ʻAʻole pono nā keiki a pau i nā lāʻau lapaʻau ʻelua. Pono paha kekahi mau keiki i hoʻokahi wale nō lāʻau lapaʻau. E hoʻoholo ʻia kēia e ka hui lapaʻau ma hope o ka nānā ʻana i ke keiki.

Hiki ke pale ʻia kēia maʻi i kapa ʻia ʻo Binder Syndrome?

ʻOiai ʻaʻole ʻike ʻia ke kumu maoli o kēia, ʻaʻole hiki ke hōʻoiaʻiʻo e hiki ke pale piha ʻia .

Eia nō naʻe, inā hāpai ʻoe, hiki iā ʻoe ke hōʻemi i kou pilikia o ka loaʻa ʻana o kēia maʻi i kekahi ʻano ma ka hōʻemi ʻana i kou ʻike ʻana i kekahi o nā mea pili i ke kaiapuni a mākou i kūkākūkā ai ma mua. Hiki iā ʻoe ke kamaʻilio me kāu kauka e pili ana i kēia:

• ʻO ka palekana o nā lāʻau lapaʻau i ka wā hāpai , ʻoiai ʻo phenytoin a me warfarin (mai lawe i kekahi lāʻau lapaʻau ke ʻole i kauoha ʻia e ke kauka, a inā i kauoha ʻia, e kamaʻilio me kāu kauka e pili ana i ia mea).
• E pili ana i nā hemahema o nā wikamina, ʻoi aku ka hemahema o ka wikamina K. He mea nui loa ka loaʻa ʻana o ka meaʻai kūpono i ka wā hāpai.

He aha ka manaʻolana no kahi keiki me ka Binder Syndrome?

ʻO kēia ka nūhou maikaʻi loa. Aia kahi hiʻohiʻona maikaʻi ma ke ʻano laulā no kēia kūlana .

ʻAʻole pono ka hapa nui o nā keiki i kekahi lāʻau lapaʻau hou ma hope o ka rhinoplasty. Hiki iā lākou ke hanu maʻamau, ʻai maʻamau, a hoʻomaikaʻi ko lākou helehelena ma hope o ke ʻoki ʻana.Hiki nō. No laila, ʻaʻohe mea e hopohopo ai, akā ʻo ka mea nui loa, ʻo ia ke ʻimi koke i ke kōkua lapaʻau.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

Inā ʻike ʻoe ua loaʻa iā ʻoe a i ʻole kāu keiki ka Binder Syndrome, hiki iā ʻoe ke nīnau i kāu kauka i nā nīnau e like me kēia. E kōkua kēia iā ʻoe e hoʻomaopopo i ke kūlana:

• "E ke kauka, he aha paha ke kumu kūpono loa o ke kūlana o kaʻu pēpē? "
• " He aha nā hoʻokolohua e hana ʻia e ʻike pololei ai i kēia maʻi Binder Syndrome? "
• " He aha nā koho lapaʻau no kēia? He aha ka mea maikaʻi loa no kaʻu pēpē?"
• " He aha nā manawa kūpono e pono ai ka lāʻau lapaʻau hou ma hope aku o ke ola? "
• "Inā loaʻa iaʻu kekahi keiki ʻē aʻe, he aha nā manawa kūpono e loaʻa ai iā ia kēia maʻi? "

Ma waho aʻe o kēia mau nīnau, e nīnau i kāu kauka i kekahi mea āu e noʻonoʻo nei.

He aha nā kūlana ʻē aʻe i loaʻa nā hōʻailona like me Binder Syndrome?

Aia kekahi mau kūlana ʻē aʻe e hoʻopilikia ai i ka ulu ʻana o ka iwi maka a like ke ʻano me ka maʻi Binder. Hopohopo pū nā kauka no kēia mau mea. Eia kekahi mau laʻana:

• ʻAcrodysostosis
• ʻO ka maʻi Apert
• Chondrodysplasia punctata, ʻano rhizomelic (CDPR)
• ʻO ka maʻi fetal warfarin (kahi kūlana i hoʻokumu ʻia e ka ʻike ʻana i ka warfarin i ka wā hāpai)
• ʻO ka maʻi Keutel
• ʻO ka maʻi Stickler

E makaʻala wale i kēia mau inoa. Na nā kauka e hoʻoholo pono i ke ʻano o kāu keiki.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i nā mea a mākou i kamaʻilio ai:

• He maʻi laha ʻole ka Binder Syndrome, he maʻi hānau hou ia .
• ʻO kēia ke kumu o ka emi ʻana o ka ulu ʻana o ka iwi ma waenakonu o ka maka, ʻoiai ka ihu a me ka ʻāwae luna . ʻO ka hopena kēia i nā hiʻohiʻona e like me ka ihu pālahalaha a me ka ʻāwae lalo e puka ana.
• ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia , akā hiki i nā kumu genetic a me ke kaiapuni ke kuleana.
• Hiki ke mālama pono ʻia kēia kūlana me ka mālama orthodontic a me/a i ʻole ke ʻoki ʻana .
• He nui nā keiki i loaʻa nā hopena maikaʻi loa ma hope o ka mālama ʻana a hiki iā lākou ke ola i ke ola maʻamau.

Inā he mau hopohopo a hopohopo paha kāu e pili ana i ke ʻano o ka helehelena o kāu keiki, e ʻoluʻolu e ʻike koke i ke kauka kūpono . ʻO ka mea nui, ʻaʻole e hopohopo, akā, e loaʻa ka ʻike kūpono a me ke alakaʻi. Aia nā kauka ma laila e kōkua iā ʻoe.

Manaʻolana wau he mea pono kēia ʻike iā ʻoe. Makemake wau iā ʻoe a me kou ʻohana i ke olakino maikaʻi!

ʻO Binder Syndrome, Binder Syndrome, nā kīnā o ke alo, nā maʻi hānau mua, ke olakino o nā keiki, ke ʻoki kino maxillofacial, ke ʻoki kino craniofacial