Kei te āwangawanga koe mō te whanaketanga o tāu kōtiro nohinohi? I mua, he omaoma, he tākaro, he kōrero nui ia, ā, kātahi ka āhua pōturi haere? He mea noa ki te whaea, ki te pāpā rānei te mataku me te manukanuka ina kite koe i tētahi mea pēnei. I tēnei rā ka kōrero tātou mō tētahi o aua mate. Ko te Rett Syndrome tēnei. He mate tino onge tēnei e pā ana ki ngā kōtiro. Kaua e manukanuka, me kōrero tātou mō ngā mea katoa me te mārama me te ngāwari.
He aha te tino pūtake o te mate Rett?
Ki te kī ngāwari, ko te mate Rett he mate i puta mai i tētahi raruraru ira. Kei ia pūtau o tō tātou tinana tētahi mea e kiia nei ko ngā chromosomes. E rua ngā chromosomes X (XX) o te tamaiti wahine. Ko te huringa, te whakarerekētanga rānei, o tētahi ira e kiia nei ko te MECP2 i runga i tēnei chromosome X te tino take o te mate Rett.
E whakapono ana ngā kaipūtaiao he tino hira te mahi a te ira MECP2 ki te whanaketanga o te roro. Mēnā he hapa kei roto i tēnei ira, ka pā tika ki te whanaketanga o te roro o te tamaiti. Koinei te mea e pā ana ki ngā mea pēnei i te kōrero, te hikoi, me te whakamahi i ngā peka me ngā waewae.
Ko te mea nui, ahakoa he mate ira te mate Rett, kāore i te nuinga o te wā ka tukuna iho mai i te mātua ki te tamaiti. He whakarerekētanga ira e puta noa ana i roto i ngā pūtau o te tamaiti. Ko te tikanga ka taea e te tamaiti te pāngia ahakoa kāore anō kia pāngia e tētahi o tō whānau. Nō reira kaua e whakapae i a koe anō, i tō hoa rānei mō tēnei.
Ka taea te whakahaere i tētahi whakamātautau ira hei whakaū i tēnei āhuatanga. I te nuinga o te wā ka mahia tēnei mā te whakamahi i tētahi tauira toto. Mēnā e tika ana, ka tukuna koe e tō tākuta mō tēnei whakamātautau.
He aha te rerekētanga i waenga i te mate Rett me te autism?
Nā te mea he rite ētahi o ngā tohu, ka taea te whakapoauau i ēnei āhuatanga e rua. I ngā āhuatanga e rua, ka pāngia te tamaiti e ngā uauatanga ki ngā taunekeneke pāpori me te whakawhitiwhiti kōrero. Heoi, he mārama ngā rerekētanga.
| Āhuatanga | Te Mate Rett | Autism (Autism Spectrum Disorder) |
|---|---|---|
| Pānga | Ko ngā kōtiro anake te nuinga e pāngia ana. | Ka kitea nuitia i waenga i ngā tama. |
| Te tipu o te upoko | Ka pōturi te tipu o te māhunga i roto i te wā (microcephaly). | I te nuinga o te wā, kāore he pānga ki te tipu o te upoko. |
| Te whakamahi ā-ringa | Ka ngaro ngā mahi ā-ringa kua akohia. Ka whakaaturia ngā nekehanga auau pērā i te mirimiri i ngā ringa me te horoi ringa. | Kāore he ngaronga o te whakamahinga ringa. Tērā pea ētahi atu whanonga auau. |
| Ngā hononga pāpori | He nui ake tō rātou aroha ki te tangata. He pai ki a rātou te aroha me te manaaki. | Ko ētahi tamariki e pai ake ana ki ngā taonga tākaro i te tangata, ā, e pai ake ana ki te noho tawhiti atu i te hapori. |
| Ngā raruraru manawa | Tērā pea ka kitea ngā tauira taupatupatu pērā i te manawa tere me te pupuri i te manawa. | Kāore e kitea whānuitia ana ēnei momo raruraru manawa. |
He aha te pānga o tēnei āhuatanga ki ngā tama?
He tino onge tēnei. Nā te mea kotahi anake te ira X (XY) o te tamaiti tāne, ki te pakaru te ira MECP2 i runga i taua ira X kotahi, ka tino kino ngā pānga. I te nuinga o te wā, ka mate aua tamariki tāne i te whānautanga, i muri tata mai rānei.
He aha ngā tohu o te mate Rett?
Ka rerekē pea ēnei tohu i ia tamaiti, i ia tamaiti. I te nuinga o te wā ka puta mai i ngā marama tuatahi e 6-18 o te oranga o te tamaiti.Ka tīmata ēnei tohu ki te puta i te wā o te pakeketanga. Ahakoa te āhua nei kei te whanake noa te tamaiti i te tīmatanga, ka puta mārire, ka puta ohorere rānei ngā huringa.
Anei ētahi o ngā tohu matua:
- Te puhoi o te tipu: Kāore te roro o te pēpi e whanake tika, ka iti te rahi o tōna māhunga. Ka kiia tēnei e ngā tākuta he microcephaly .
- Te ngaronga o te mahi a te ringa: Ka ngaro taua pūkenga o te tamaiti i mōhio ki te pupuri taonga takaro me te mahi mea ki ōna ringaringa. Engari, ka haere tonu ia ki te mahi i ngā nekehanga o mua, pērā i te mirimiri i ōna ringa me te horoi i ōna ringa.
- Te ngaronga o te kōrero: Ko te tamaiti i kōrero i waenga i te 1 me te 4 tau te pakeke ka mutu whakarere tana kōrero.
- Ngā raruraru hikoi me te nekehanga: Ka taea e ngā raruraru uaua me te taurite te whakararu i te hikoi rerekē. Tērā pea ka kore e taea e koe te hikoi.
- Ngā raruraru manawa: Tērā pea ka kitea te manawa tere tonu ( te manawa nui rawa ) me te pupuri i te manawa.
- Ngā mate hopuhopu: He maha ngā tamariki e pāngia ana e te mate Rett ka pāngia e ngā mate hopuhopu i tētahi wā o ō rātou oranga.
- Ētahi atu tohu: Tērā pea ka kitea anō hoki ngā huringa whanonga pēnei i te scoliosis , ngā nekehanga kanohi rerekē, ngā raruraru moe , te kuru niho, me te riri, te tangi pinepine rānei.
Ngā wāhanga e whā o te mate Rett
E whā ngā wāhanga e whanake haere ai tēnei mate, engari kāore e ōrite te pānga ki ia tamaiti.
| Atamira | Wā | Ngā mea hei tiro |
|---|---|---|
| Wāhanga I: Wāhanga tōmua | 6 - 18 marama | He tino ngawari ngā tohu. He iti te titiro kanohi, he iti te hiahia ki ngā taonga takaro, he puhoi te ngokingoki me te noho. |
| Wāhanga II: Te hekenga tere | 1 - 4 tau | Ka tere te ngaro o ngā pūkenga ako a te tamaiti (te kōrero, te whakamahi i ngā ringaringa). Ka puhoi te tipu o te mahunga, ā, ka tīmata ngā nekehanga ringaringa rerekē. |
| Wāhanga III: Papa Rakau | Mai i te 2 - 10 tau ki te pakeketanga | Ka mutu te hokinga whakamuri. Ahakoa he raruraru nekehanga, ka pai ake te whanonga (te tangi, te riri). Tērā pea ka pai ake te whakawhitiwhiti kōrero me te whakamahi ringa. Tērā pea ka puta te mate haurangi. |
| Wāhanga IV: Te ngaronga atu o te nekenekehanga | I muri i ngā tau 10 | Ka iti haere te nekehanga. Ka piki haere te ngoikore o te uaua me te scoliosis. Engari ka pai ake pea te mate haurangi me te whakawhitiwhiti kōrero. |
He aha ngā maimoatanga mō tēnei?
Engari, kāore he rongoā mō te mate Rett. Heoi, he maha ngā maimoatanga hei āwhina i te whakahaere i ngā tohu me te hoatu ki tāu tamaiti te kounga pai rawa atu o te oranga. He mahi tahi tēnei. Kei te whai wāhi katoa tō tākuta, ngā kaiwhakaora tinana, me ngā kaiwhakaora kōrero.
- Ngā Rongoā: Ka hoatu ngā rongoā hei whakahaere i ngā mea pēnei i te mate haurangi, te mamae o te uaua, me ngā raruraru moe. Kua whakaaetia tata nei tētahi rongoā hou e kīia nei ko te trofinetide (Daybue) , ā, ka taea e ia te whakahaere i ētahi o ngā tohu. Kōrero ki tō tākuta mō tēnei.
- Whakaora Tinana: Ka āwhina tēnei ki te whakapai ake i te nekehanga, te taurite, me te āheinga hikoi o te tamaiti. He mea nui anō hoki mō te whakatikatika i te tuaiwi.
- Whakaora Mahi: Ka āwhina tēnei i te whakawhanake i te kaha o ngā ringa o te tamaiti ki te mahi i ngā mahi o ia rā, pērā i te whakakakahu me te kai.
- Whakaora Kōrero: Ahakoa kāore e taea e te tamaiti te kōrero, ka akona rātou ki te whakapuaki i a rātou anō mā roto i ētahi atu huarahi, pērā i te whakamahi i ō rātou kanohi me ngā pikitia.
- Kai pai: He mea nui te kai taurite mō te tipu o te tamaiti. Mena he uaua ki tāu tamaiti te horomi, me kōrero koe ki tō tākuta mō tēnei.
He wero te tiaki i tētahi tamaiti e pāngia ana e te mate Rett. Engari kia maumahara, ehara i te mea ko koe anake. He whakahaere me ngā rōpū tautoko mātua kei reira hei tautoko i tāu tamaiti. He puna kaha nui te hono atu ki a rātou.
Karere Tangohia ki te Kāinga
- He mate ira onge te mate Rett Syndrome, ā, ko ngā kōtiro te nuinga e pāngia ana.
- Ehara tēnei i te mea i tukuna iho i ngā mātua, engari he panonitanga matapōkere i roto i ngā ira o te tamaiti.
- Ko te āhuatanga matua ko te ngaronga o ngā pūkenga ako a te tamaiti (te kōrero, te hikoi, te whakamahi i ō rātou ringaringa) i roto i te wā (te hoki whakamuri).
- Ahakoa kāore e taea te whakaora katoa i tēnei mate, ka taea e ngā rongoā me ngā tikanga whakaora te whakahaere i ngā tohu, ā, ka pai te oranga o te tamaiti.
- Mena he āwangawanga āu mō te whanaketanga o tāu tamaiti, kōrero tonu atu ki tō tākuta. He mea nui kia whakatau whai whakaaro koe, kaua e mataku.
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