Kua puta he puku iti i tō tamaiti i tētahi wāhi o tōna tinana? He kiri mākūkū rānei, he mākūkū rānei e kore e ora? He mea noa ēnei i ētahi wā, engari he onge pea he tohu o tētahi mate onge e kiia nei ko te Langerhans Cell Histiocytosis (LCH). He mea noa te mataku ina rongo koe i tēnei ingoa, nā te mea ehara i te mea e taunga ana tātou ki te whakarongo. Kaua e manukanuka, me kōrero tātou mō tēnei mea i roto i ngā kupu māmā noa iho.
He aha te LCH?
Whakaarohia tō tātou tinana he whenua nui. He ope taua hei tiaki i tēnei whenua, ko tō tātou pūnaha ārai mate tēnā . Ko tētahi momo hōia motuhake i roto i tēnei ope taua ko ngā pūtau Langerhans . He momo toto mā ēnei pūtau. Ko tā rātou mahi matua he whawhai ki ngā iroriki me ngā mate e uru mai ana ki roto i tō tātou tinana, me te tiaki i a tātou mai i ngā mate. Kei roto i tō tātou tinana ēnei hōia, inā koa i roto i te kiri, i ngā pukahukahu, i ngā kōpū lymph, i te hinu wheua, i te whēkau, me te ate.
Engari mō te LCH, ka nui haere ēnei pūtau Langerhans, ā, ka kohikohi ki ngā wāhanga rerekē o te tinana. He rite ki tētahi kahui hōia e tū noa ana i te wāhi kotahi, kāore he whawhai. Ina kohikohi pēnei rātou, ka tīmata te kino i ngā kiko hauora o aua wāhi. Ka puta ngā whara i aua wāhi.
Ko te rongo pai mō tēnei mate, ka taea e te nuinga o ngā tamariki te ora katoa i te mate mā te rongoā tika. I ētahi wā, ina koa ko te kiri anake ka pā, ka memeha noa iho me te kore rongoā. Heoi, ki te pāngia e ēnei pūtau ngā whekau nui pērā i te hinu wheua, te whēkau, te ate rānei, me nui ake te rongoā.
He mate pukupuku LCH?
He pātai tēnei nā te tini o te tangata. Ina hoki, kei te noho tonu te whakahē a ngā tākuta mō tēnei. He maha ngā kairangahau e whakaaro ana ko te LCH he āhua rite ki te mate pukupuku, arā, he neoplasm . Arā, he tipu rerekē o ngā pūtau. Engari ko ētahi e whakaaro ana he mate mumura o te pūnaha ārai mate.
Heoi, ka rongoatia te LCH e ngā tākuta mate pukupuku, he tohunga ki te mate pukupuku me ngā mate toto. I ētahi wā, ka whakamahia hoki ngā maimoatanga ārai-mate pukupuku pēnei i te chemotherapy hei rongoā.
Ko wai te mea tino tūpono ka pāngia e tēnei mate?
Ko te LCH te mea tino kitea i roto i ngā pēpi hou me ngā tamariki i waenga i te 1 me te 15 tau te pakeke. He tino onge ngā pakeke, engari he mea e kore e taea.
E ai ki ngā tatauranga, kotahi, e rua rānei i roto i ia miriona pēpi hou ka whānau mai me tēnei mate i ia tau. Ko te tikanga he tino onge tēnei mate.
He aha ngā tohu o te LCH?
Kāore te LCH e pā ki ngā tamariki katoa i te huarahi kotahi. Ahakoa kotahi noa te wāhi o te tinana o ētahi tamariki e pāngia ana, ko ētahi atu he maha atu ngā wāhi o te tinana e pāngia ana. Nō reira, he rerekē ngā tohu i runga i te wāhanga o te tinana e pāngia ana. Me titiro tātou he aha ēnei tohu.
| Wāhanga tinana e pāngia ana | Ngā tohu ka kitea |
|---|---|
| Ngā wheua | E pāngia ana ngā wheua e te LCH i te 80% o ngā tūroro. Tērā pea ka puta he puku, he pupuhi rānei i ngā wāhi pērā i te angaanga, ngā wheua huri noa i ngā kanohi, i muri i ngā taringa, i te kauae, i ngā peka, i te tuaiwi, me ngā hope. Tērā pea ka mamae, kāore rānei. Hei tāpiri, ka kitea pea te ānini o te upoko, te mamae o te kaki/tuara, te uaua ki te hikoi, me te ngoikore. |
| Kiri | Ko te ponana kiri te mea tino kitea. He mate kore e ora te Cradle Cap, ka puta ki te māhunga o te pēpi. Ka puta pea ngā wāhi whero, unahi ki te hope, ki ngā kēkē, ki te puku, ki te uma, me te tuara. Ka turuturu pea ēnei, ka mākūkū, ka mamae rānei. Ka rerekē te tae o ngā maikuku, ka taka rānei. |
| Waha | Ngā niho marere, ngā niho e hoki whakamuri ana, ngā kapia pupuhi, ngā mate i ngā ngutu, i te arero, i roto i ngā paparinga, i te tuanui rānei o te waha. |
| Ate, Wāhanga rānei | Ka pupuhi pea te puku, ka kōwhai ngā kanohi me te kiri (jaundice), ka mākūkū, ka ngenge rawa, ka ngawari hoki te marō, te toto rānei i te ate, i te whēkau rānei kua nui haere. |
| Huero Wheua | Te kore toto nui, te kiri mā, te ngenge, me te kore hiahia kai nā te hekenga o ngā toto whero. Ngā mate pāwera me te kirika nā te hekenga o ngā toto mā. Ngāwari te marō nā te hekenga o ngā pereti toto. |
| Pūnaha Endocrine (Pūnaha Endocrine - Ngā Homoni) | Mena ka pāngia te repe pituitary: te matewai nui me te mimi pinepine (diabetes insipidus), te tipu puhoi, te pakeketanga wawe, te roa rānei o te pakeketanga, te pikinga o te taumaha. Mena ka pāngia te repe thyroid: te pupuhi o te repe, te uaua ki te manawa. |
| Taringa | Ngā mate taringa maha, te rere o te wai i te taringa, te whero o te taringa, te mākūkū o te taringa, te mamae o te taringa, me te ngaronga o te rongo. |
| Ngā kanohi | He kanohi pupuhi, he pupuhi i runga ake i ngā kanohi, he ngoikore te tirohanga. |
| Ngā Pūnaha Lymph | Te pupuhi me te mamae o ngā puku (ngā puku) i te kaki, i ngā kēkē, i te uma rānei. |
| Pūnaha Io Matua | Te ānini o te upoko, te whanoke, te ruaki, te uaua ki te hikoi, te ngaro o te taurite (ataxia), te uaua ki te kōrero, ki te kite rānei, ngā haurangi, ngā huringa whanonga me te mahara. |
| Ngā pūkahukahu | He mea noa tēnei i waenga i ngā pakeke, inā koa ko ngā kaipaipa. Mamae te uma, maremare maroke, uaua ki te manawa, hinga te pukahukahu (pneumothorax). |
| Te Ara Puku | Mamae te puku, te ruaki, te korere, te toto i roto i te tūtae, me te tipu ngoikore nā te korenga o ngā kai totika. |
Ko te mea nui, ka kitea anō hoki ēnei tohu i roto i ngā mate maha atu. Nō reira, kaua e wehi i te LCH nā te mea kei a koe tētahi, e rua rānei o ēnei tohu. Engari, ki te mau tonu ēnei tohu, he mea nui kia kite i te tākuta me te whiwhi i te tātaritanga tika.
He aha te tino take o te LCH?
He whakarāpopototanga noa iho, he ira kei roto i ō tātou pūtau e kī ana kia "wehewehea inaianei, kati inaianei." Tata ki te haurua o ngā tamariki whai LCH he iti noa te huringa, he whakarerekētanga rānei, kei roto i ō rātou ira e kiia nei ko te `BRAF .' Ka hangaia e tēnei ira he pūmua e whakahaere ana i te tipu o ngā pūtau. Nā tēnei whakarerekētanga, kāore taua pūmua e whiwhi i te whakahau kia "kati te wehewehe." He rite ki te mea kua mau te pātene 'whakakā'. Nō reira, ka wehewehe tonu, ka hanumi tonu ngā pūtau Langerhans.
Ehara tēnei i te mea tuku iho mai i ngā mātua ki ngā tamariki. Ka puta noa tēnei whakarerekētanga ira i muri i te haputanga o te tamaiti i roto i te kōpū o te whaea.
Haunga te ira `BRAF`, kua kitea e ngā kairangahau ka puta pea tēnei mate i ngā whakarerekētanga ira i roto i ētahi atu ira pēnei i te `MAP2K1`, `RAS`, me te `ARAF`.
Me pēhea e kitea ai tēnei e koe, e Tākuta?
Ina haria e koe tāu tamaiti ki te tākuta, ka pātai tuatahi ia ki a koe mō ngā tohumate o tāu tamaiti. Kātahi ka tirotirohia e rātou tāu tamaiti. Nā te mea ka pā te LCH ki ngā wāhanga rerekē o te tinana, tera pea e hiahiatia he maha ngā whakamātautau hei whakaū i te mate.
| Momo whakamātautau | Hei whakarāpopototanga... |
|---|---|
| Ngā Whakamātautau Toto | Mā te tatau toto katoa (CBC) ka ine i te maha o ngā toto whero, ngā toto mā, me ngā pereti toto i roto i te toto. Ka mahia hoki ngā whakamātautau toto hei tirotiro i ngā mea pēnei i te mahi a te ate. |
| Te koiora | Koinei te huarahi tino whaimana hei whakaū i te LCH.Ka tangohia he wahi iti o te kiko mai i tētahi puku, i tētahi whara rānei i raro i te rongoā whakamoe, ā, ka tirohia i raro i te karuārai hei whakaū mēnā kei reira ngā pūtau LCH. Mēnā kei te whakapaetia he pānga o te hinu wheua, ka taea hoki te mahi i tētahi koiora hinu wheua. |
| Whakamātautau Ira | Ka whakamahia te tauira kiko i tangohia mai i te koiora hei whakamātautau mō tētahi whakarerekētanga ira i roto i te ira 'BRAF'. |
| Ngā Whakamātautau Whakaahua | Mā ngā whakamātautau pēnei i te hihi-X, te matawai CT, te matawai MRI, me te matawai PET ka taea te whakatau i te whānuitanga o ngā pānga o te LCH ki ngā whekau o roto pēnei i te wheua, te roro, me ngā pukahukahu. |
I runga i ngā hua o ēnei whakamātautau, ka tukuna e tō tākuta tō tamaiti ki tētahi tākuta toto/oncologist tamariki.
He aha ngā maimoatanga mō te LCH?
Kāore e hiahiatia ana te momo maimoatanga ōrite mō ngā tamariki katoa e pāngia ana e te LCH. Ko te maimoatanga e whakawhirinaki ana ki te wāhi me te kaha o te mate.
E rua ngā momo matua o te LCH e whakarōpūtia ana e ngā tākuta:
1. LCH pūnaha-kotahi: Kotahi anake te pūnaha okana o te tinana ka pā ki te mate (hei tauira, ko ngā wheua anake, ko te kiri anake rānei).
2. LCH maha-pūnaha: Ka pāngia e te mate ngā pūnaha okana e rua, neke atu rānei o te tinana (hei tauira, te kiri me te ate).
Waihoki, ko ngā whekau pēnei i te ate, te whēkau, me te hinu wheua e kiia ana he whekau "morearea nui", ko ngā whekau ia pēnei i te kiri, ngā wheua, me ngā pukahukahu e kiia ana he "morearea iti." Mā tēnei whakarōpūtanga ka whakatau te mahere maimoatanga.
He maha ngā tikanga maimoatanga matua:
- Te rongoā steroid: Ina koa ko te kiri anake e pāngia ana, ka whakamahia ngā rongoā steroid pēnei i te prednisone hei pire, hei hinu rānei.
- Pokanga: Ka mahia te pokanga pēnei i te curettage hei tango i te pukupuku LCH i roto i te wheua.
- Te rongoā matū: He momo rongoā tēnei e hoatu ana hei patu i ngā pūtau matepukupuku. Nā te tere o te wehewehe o ngā pūtau LCH, ka aukatihia e ēnei rongoā tō rātou tipu. Ka taea te hoatu i ēnei rongoā hei pire, hei werohanga, hei kirīmi rānei e pania ana ki te kiri.
- Whakaora irahiko: Ka whakamahia ngā hihi kaha-nui hei whakangaro i ngā pūtau LCH. Kāore i te tino onge te whakamahinga o tēnei i ēnei rā.
- Te rongoā arotahi:Mō ngā tamariki he whakarerekētanga ira `BRAF`, kei reira ngā rongoā (ngā aukati BRAF) e aro ana ki taua whakarerekētanga. He iti noa iho te kino o ēnei ki ngā pūtau hauora.
- Ārai Mate: Te whakaoho i te pūnaha ārai mate o te tamaiti kia whawhai ki ngā pūtau LCH.
- Te whakatō pūtau take: He kōwhiringa maimoatanga e whakaarohia ana i roto i ngā take tino kino kāore e taea e ētahi atu maimoatanga.
Kei te pēhea te āhua i muri i te maimoatanga?
Ko te matapae mō te LCH e whakawhirinaki ana ki ētahi āhuatanga, tae atu ki ngā wāhanga o te tinana kua pāngia e te mate, te whānui o tōna horapa, me te pai o tōna urupare ki te maimoatanga.
- Ko te auau whakaora mō ngā tamariki he iti noa te mōrearea o te pānga o ngā okana (ngā pūnaha kotahi me ngā pūnaha maha) e tata ana ki te 100% . Ko te tikanga o tēnei kāore he mōrearea o te mate. Heoi, kei reira te mōrearea o te hokinga mai, o ētahi atu raruraru roa rānei.
- Tērā pea ka kino ake te āhua o ngā tamariki e pāngia ana ō rātou whekau "morearea" pērā i te ate, te whēkau, me te hinu wheua.
Nō reira, he mea tino nui te tirotiro i tō tākuta mō ngā tau maha, ahakoa kua oti te maimoatanga. Me tirotirohia tonutia koe mō te hokinga mai o te mate.
Karere Tangohia ki te Kāinga
- He mate onge te Langerhans Cell Histiocytosis (LCH) e puta mai ana i te tipu kore mana o tētahi momo pūtau ārai mate. Ko te nuinga o te wā ka kitea i roto i ngā tamariki.
- Ahakoa kāore tēnei i te whakarōpūtia hei mate pukupuku, ka rongoāhia e ngā tākuta pukupuku mā te whakamahi i ngā rongoā ārai-mate pukupuku.
- He rerekē rawa ngā tohu (ngā whara kiri, ngā pona wheua, ngā mate urutā auau) i runga i te wāhanga o te tinana e pāngia ana e te mate.
- He mea nui te koiora hei tautuhi tuturu i te mate.
- Mō te tini o ngā tamariki, inā koa ko te hunga kei roto i te wāhanga "iti te mōrearea", ka taea e te maimoatanga te whakaora katoa i te mate.
- Ahakoa kua oti te maimoatanga, he mea tino nui kia tirotirohia e te rata mō ngā tau maha kia kite ai mēnā ka hoki mai anō te mate.
- Kōrerotia ō pātai, ō āwangawanga rānei mō te āhua o tāu tamaiti ki tō tākuta.
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