I te whānautanga o tāu tamaiti, i kite koe i ētahi panonitanga iti i te āhua o tōna mata? I ētahi wā, tera pea he papatahi te āhua o tōna ihu, kāore rānei i te tika te tūnga o tōna ngutu o runga. He mea noa ki te whaea, ki te pāpā rānei te mataku ina kite rātou i tētahi mea pēnei. Kaua e manukanuka, i tēnei rā ka kōrero tātou mō tētahi āhuatanga e whakaatu ana i ngā tohu rite, engari kāore i te tino noa, e kiia nei ko te Binder Syndrome.
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He aha te Binder Syndrome? He māmā noa iho...
He mate onge , he mate whānau mai te Binder syndrome, e puta mai ana i te whānautanga. Ko tōna āhua ko ngā wheua i waenganui o te mata, inā koa te ihu me te kauae o runga, kāore e whanake tika. He rite ki te āhua o ētahi pakitara o te whare kāore i te tika te hanga. Ka rerekē pea te āhua o te mata o te pēpi i tēnei.
Whakaarohia, ko te āhua o tō tātou ihu me te ngutu o runga nā ngā wheua i raro. Nō reira, ina mutu te tipu o aua wheua, ka rerekē te āhua. Ka uaua pea ētahi tamariki ki te manawa nā tēnei mate, ā, ka raru pea rātou ki te kai, inā koa i te wā e whāngai ū ana . Engari ko te rongo pai, he rongoā kei reira mō tēnei. I te nuinga o te wā, ina pakeke ake te tamaiti, arā, ina tae rātou ki te taiohitanga (i waenganui i te 15-19 tau te pakeke), ka taea te whakatikatika i ēnei wheua, ā, ka taea te whakahoki mai i te āhua o te mata mā te pokanga kanohi me te kauae (pokanga maxillofacial) .
He ingoa kē atu anō mō te Binder Syndrome?
Ae, ka whakamahia e ngā tākuta ētahi atu ingoa mō tēnei mate. He mea pai kia mōhio koe nā te mea ka rongo pea koe i ēnei ingoa:
- Āhuatanga o te Binder - Ko tētahi atu ingoa tēnei mō te Binder syndrome.
- Momo herenga nasomaxillary dysplasia
- Te ngoikore o te ihu o runga
- Te ngoikore o te ihu o runga o te mahunga
Ahakoa te ahua uaua o ēnei ingoa, he rite tonu te tikanga.
He pēhea te noa o te ingoa o tēnei āhuatanga ko te Binder Syndrome?
He tino onge tēnei mate . E ai ki ētahi pūrongo, kotahi i roto i te 10,000 pēpi hou ka pāngia e tēnei mate. Nō reira kaua e mataku. Ahakoa he onge, he mea nui kia mōhio koe ki tēnei.
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View Clinical Details →He aha ngā tohu o te Binder Syndrome?
Ko te āhuatanga matua o tēnei mate ko te korenga o te tipu i waenganui o te mata . Nō reira, ka kitea pea ēnei huringa i te mata o te tamaiti:
- Ka papatahi te ihu, ka papatahi hoki te ngutu o runga . Tērā pea te āhua nei kua totohu te ihu ki roto.
- Ka pūwero whakamua te kauae o raro.Koinei te āhua. Ka puta tēnei āhua nā te mea ka anga te kauae o runga ki roto, ka anga te kauae o raro ki mua.
- Kāore ngā niho o runga me o raro e piri pai ana (malocclusion) . Ka raru pea te kai me te kōrero.
- Ka tapatoru, ka porowhita rānei te āhua o ngā pongaponga ihu .
Koinei ngā tohu tino kitea. Heoi anō, hei tāpiritanga atu ki tēnā, tera pea ka kitea anō hoki ēnei tohu i ētahi wā onge :
- Te waha whati .
- Ngā hapa ngākau whānau .
- Ngā ngoikoretanga o te whakarongo .
- Hauātanga hinengaro .
- Ngā hapa o te tuaiwi .
- Te matapōkere, te kanohi whiti rānei .
Kāore e pāngia ngā tamariki katoa e ēnei tohu katoa. Tērā pea ko ngā tohu taketake anake ka pāngia e ētahi tamariki.
He aha te take e puta ai te Binder Syndrome? He aha ngā take?
Ki te pono, kāore anō kia tino kitea e ngā tohunga te take o tēnei . I te nuinga o te wā, ka pāngia ngā tamariki e tēnei mate, kāore he take e kitea ana.
Heoi, nā te mea he maha ngā tamariki o ētahi whānau e pāngia ana e tēnei mate, e whakapaetia ana kei reira pea ngā āhuatanga ira, arā, he awe ira . Heoi, kāore anō kia whakamātauhia tēnei kia tino mārama.
Hei tāpiritanga, e whakapono ana ngā kairangahau he maha ngā āhuatanga taiao ka whai wāhi pea. Ko ētahi o ēnei āhuatanga ko:
- Te whakamahinga waipiro a te whaea i te wā e hapu ana.
- Te pānga ki ētahi rongoā i te wā e hapu ana. Hei tauira, ko te phenytoin anti-epileptic (Dilantin®, Phenytek®) me te warfarin whakangawari toto (Coumadin®, Jantoven®). (Me tango ēnei rongoā i raro i te tirotiro a te taote mēnā e tika ana, engari me tino tupato i te wā e hapu ana.)
- Te korenga o te huaora K i te wā e hapu ana.
- Te whara ki te mahunga, ki te kanohi rānei i te wā e whānau ana.
Koinei ngā āhuatanga mōrearea kua tautuhia i tēnei wā.
Me pēhea te tautuhi a ngā tākuta i te Binder Syndrome?
Ka whakapae tuatahi ngā tākuta mō tēnei āhuatanga mā te titiro ki te āhua o te mata o te pēpi . Kātahi, hei whakaū, hei whakakore rānei i taua whakapae, ka whakahaerehia e rātou he whakamātautau motuhake e kitea mārama ai te hanganga wheua o te mata . Ko ēnei e kiia ana ko:
- Ngā matawai CT
- Ngā Matawai MRI (MRI)
- Ngā matawai ultrasound ('ultrasounds')
Mā roto i ēnei matawai, ka taea e tātou te kite tika i te korenga o te tipu o ngā wheua o te kanohi.
He aha ngā maimoatanga mō te Binder Syndrome?
He rerekē te maimoatanga mō tēnei i ia tamaiti, i ia tamaiti, ā, e whakawhirinaki ana hoki ki te kaha o ngā tohu.He rerekē. E rua ngā tikanga maimoatanga matua:
1. Te tiaki niho:
- Ko te tikanga o tēnei ko te whakatakoto waea ('ārai niho') ki roto i te waha hei whakarite tika i te kauae me ngā niho .
- I ētahi wā, ki te kore e tino kino ngā tohu, he rawaka pea tēnei maimoatanga niho anake.
- I ētahi atu wā, me mahi pea tēnei maimoatanga i mua atu, i muri rānei i te pokanga.
2. Pokanga:
- Koinei te tikanga maimoatanga matua. Mā te taote pokanga angaanga me te mata (he tākuta tohunga ki te angaanga me te kanohi) ēnei pokanga e mahi.
- I tēnei, ka hurihia te āhua o te ihu mā te whakamahi i te wheua, te kiriuhi, te rauemi hangai rānei i tangohia mai i te tinana o te tamaiti . Ka kiia hoki tēnei ko te rhinoplasty .
- Waihoki, ka taea te mahi i tētahi momo pokanga e kiia nei ko te Le Fort I, II rānei osteotomy hei whakahoki i te kauae o runga ki tōna tūranga tika. He pokanga uaua ēnei, engari ka taea e ngā tākuta mātau te mahi angitu.
- Ko te tikanga, ka tūtohu ngā tākuta kia tatari kia mutu rawa te tipu o ngā wheua kanohi o te tamaiti i mua i te mahi i tēnei pokanga, arā, i waenganui i te 15 me te 19 tau te pakeke. Nā te mea, ki te mahia i mua i taua wā, ka puta anō ngā raruraru i te mea ka tipu tonu ngā wheua.
He mea nui: Kāore e hiahiatia ana e ngā tamariki katoa ngā maimoatanga e rua. Tērā pea ka hiahiatia e ētahi tamariki tētahi maimoatanga anake. Ka whakatauhia tēnei e te tīma hauora i muri i te tirotiro i te tamaiti.
Ka taea te ārai i tēnei āhuatanga e kīia nei ko te Binder Syndrome?
Nā te mea kāore i te tino mōhiotia te tino pūtake o tēnei, kāore e taea te kī taurangi ka taea te ārai katoa .
Heoi, ki te mea kei te hapu koe, ka taea e koe te whakaiti i tō tupono ki te whakawhanake i tēnei mate mā te whakaiti i tō pānga ki ētahi o ngā āhuatanga taiao i kōrerohia e tātou i mua ake nei. Ka taea e koe te kōrero ki tō tākuta mō tēnei:
- Te haumaru o ngā rongoā i te wā e hapū ana , inā koa ko te phenytoin me te warfarin (kaua e tango i tētahi rongoā ki te kore e tohua e te tākuta, ā, ki te tohua, kōrero ki tō tākuta mōna).
- Mō te korenga o ngā huaora, inā koa te korenga o te huaora K. He mea tino nui te whiwhi i te kai tika i te wā e hapu ana.
He aha te tirohanga mō te tamaiti e pāngia ana e te Binder Syndrome?
Koinei te rongo pai rawa atu. He tirohanga pai te nuinga mō tēnei āhuatanga .
Kāore te nuinga o ngā tamariki e hiahia ki tētahi atu maimoatanga i muri i te pokanga niho. Ka taea e rātou te manawa noa, te kai noa, ā, ka pai ake te āhua o ō rātou kanohi i muri i te pokanga.Tērā pea. Nō reira, kāore he mea hei manukanuka, engari ko te mea nui ko te rapu tohutohu hauora i te wā e taea ai.
He aha ngā pātai me pātai atu e au ki taku tākuta?
Ki te kitea e koe kei a koe, kei tāu tamaiti rānei te Binder Syndrome, ka taea e koe te pātai atu ki tō tākuta i ēnei pātai. Mā ēnei koe e āwhina ki te mārama ki te mate:
- "E te tākuta, he aha te tino take o te mate o taku pēpi? "
- " He aha ngā whakamātautau e mahia ana hei tautuhi tika i tēnei mate Binder Syndrome? "
- " He aha ngā huarahi maimoatanga mō tēnei? Ko tēhea te mea pai mō taku pēpi?"
- " He aha ngā tūponotanga ka hiahiatia anō he maimoatanga ā muri ake nei? "
- "Mēnā ka whānau mai anō taku tamaiti, he aha te tūponotanga ka pāngia anō hoki ia e tēnei mate? "
Haunga ēnei pātai, pātai atu ki tō tākuta i ngā mea katoa kei roto i tō hinengaro.
He aha atu ngā mate he rite ngā tohu ki te Binder Syndrome?
He maha atu anō ngā āhuatanga e pā ana ki te tipu o te wheua o te kanohi, ā, he rite tonu te āhua ki te mate Binder. E āwangawanga ana hoki ngā tākuta mō ēnei. Ko ētahi tauira:
- Acrodysostosis
- Te mate Apert
- Chondrodysplasia punctata, momo rhizomelic (CDPR)
- Te mate fetal warfarin (he mate i puta mai i te pānga ki te warfarin i te wā e hapu ana)
- Te mate Keutel
- Te mate Stickler
Kia tūpato ki ēnei ingoa. Mā ngā tākuta e whakatau te āhua o te mate o tāu tamaiti.
Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)
Āe, me whakarāpopoto tātou i ngā mea kua kōrerohia e tātou:
- He tino onge te Binder Syndrome, he mate whānau mai anō .
- Ka heke te tupu o te wheua i waenganui o te mata, inā koa te ihu me te kauae o runga . Ka hua ake ngā āhuatanga pēnei i te ihu papatahi me te kauae o raro e pupū ake ana.
- Kāore i te tino mōhiotia te tino take o tēnei , engari tera pea he pānga o ngā āhuatanga ira me te taiao.
- Ka taea te rongoā angitu i tēnei āhuatanga mā te maimoatanga orthodontic me/ranei te pokanga .
- He tino pai ngā hua o te nuinga o ngā tamariki i muri i te maimoatanga, ā, ka taea e rātou te noho i te oranga noa.
Mena he āwangawanga, he āwangawanga rānei āu mō te āhua o te kanohi o tāu tamaiti, tēnā tirohia he tākuta whai tohu i te wā e taea ai . Ko te mea nui kia kaua e mataku, engari kia whiwhi i ngā mōhiotanga me ngā aratohu tika. Kei reira ngā tākuta hei āwhina i a koe.
Ko tāku tumanako ka whai hua ēnei kōrero ki a koe. Kia ora koutou ko tō whānau!
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