Kua kite koe i tētahi wā he roa ake tētahi o ngā waewae o tāu tamaiti i tētahi atu? He ahua nui ake rānei tētahi taha o tōna mata i tētahi atu? I ētahi wā he mea noa ēnei. Heoi anō, tera pea ētahi tamariki he mate onge kei reira he wāhanga o tōna tinana he nui rawa. I tēnei rā ka kōrero tātou mō ngā PAINGA o tēnei mate. Kaua e wehi ki te kite i tēnei, ko te mea nui ko te mārama ki tēnei.
Hei whakarāpopototanga, he aha ēnei PAINGA?
Tērā pea he ahua uaua te ahua o te PROS. Ko tōna ingoa katoa ko te
PIK3CA-Related Overgrowth Spectrum . Ki te whakarāpopototanga, ehara te PROS i te mate kotahi. He rōpū o ngā āhuatanga onge, e pā ana ki ngā āhuatanga e meinga ai ngā wāhanga o te tinana kia nui rawa, kia rerekē rānei te tipu. Pērā i te maha o ngā tae i roto i te āniwaniwa, he maha ngā āhuatanga rerekē kei raro i te maru o te PROS. Ko te mea kotahi e rite ana i waenga i ēnei āhuatanga katoa ko te mea i puta mai i te whakarerekētanga o tētahi ira e kiia nei ko te 'PIK3CA' i roto i te tinana.
Ehara tēnei i te he o tētahi . He huringa ira matapōkere tēnei e puta ana i muri i te haputanga o te pēpi i roto i te kōpū.
Ko te mea nui, he rerekē te katoa o te tangata whai PROS . Kāore pea ngā tohumate o tētahi tamaiti e rite ki tētahi atu. Nō reira, he ahurei te āhua o tāu tamaiti.
He maha ngā āhuatanga noa e kitea whānuitia ana i roto i ngā āhuatanga PROS. Me titiro tātou ki ērā āhuatanga.
| Tohu | He whakamārama māmā |
|---|
| Te whakanui ake i ngā wāhanga o te tinana | Te whakanui rerekē o tētahi wāhanga tinana, neke atu rānei, pērā i te ringa, te waewae, te maihao rānei. |
| Ngā huringa o te roro | He nui te roro o ētahi tamariki, he haurua rānei o te roro. |
| Ngā puku momona | Te hanganga o ngā pukupuku ngako i ngā wāhanga rerekē o te tinana, inā koa i ngā wāhi pērā i te puku. |
| Ngā huringa o ngā wheua | Ngā āhuatanga pēnei i te kopikopiko o te wheua me te scoliosis. |
| Ngā panonitanga o ngā maihao | He roa rawa, he nui, he honohono rānei ngā maihao, ngā maihao rānei, he rerekē te āhua. |
| Ngā ira kiri | He ira pango kei te kiri, he taratara rānei kei ētahi wāhi. |
| Ngā raruraru o ngā oko toto | Te tipu rerekē o ngā uaua toto (ngā āhua koretake o te toto), ka piki ake ai te mōrearea o te toto totoka. |
| Ētahi atu āhuatanga | Te ngoikore o te uaua, ngā haurangi, me ngā whakaroa i te ako, i te whanaketanga hinengaro rānei. |
Ngā momo PROS me ō rātou āhuatanga
Ka whakarōpūhia e ngā tākuta ngā āhuatanga PROS i runga i ngā tohu e whakaatuhia ana e te tamaiti. Me titiro tātou ki ētahi o ngā momo matua me ō rātou āhuatanga.
Te mate CLOVES
Tērā pea ka puta ngā huringa ki roto i ngā uaua toto o ngā tamariki e pāngia ana e tēnei mate, arā, he ira pango i runga i te kiri me ngā maihao rerekē i te whānautanga.
Ētahi atu tohu o te mate CLOVES
| Ngā nati momona | Te hanganga o ngā pukupuku i hangaia mai i te ngako i roto i te tinana. |
| Ngā huringa kiri | Ngā ira kiri, ngā tupu kiri rānei. |
| Ngā huringa wheua | Ngā āhuatanga pēnei i te scoliosis. |
| Ngā huringa o ngā peka | Ngā maihao kua rahi, te tipu koretake o ngā peka. |
| Ngā raruraru whatukuhu | Kotahi te whatukuhu e ngaro ana, e iti ana rānei. |
Te mate pukupuku Megalencephaly-capillary (MCAP)
Ka pāngia te roro me te maha atu o ngā wāhanga o te tinana e tēnei āhuatanga. He maha ngā tamariki whai MCAP ka whānau mai me te upoko nui rawa atu. Ka taea e te upoko te tipu tere i te tau tuatahi o te oranga.
Ngā tohu o te mate MCAP
| Te whakanui i te roro | Te whakanui ake i te roro katoa, i te haurua rānei o te roro. |
| Ngā huringa kanohi | Ngā paparinga me ngā ngutu kī tonu. |
| Te rerekētanga o te kiri | Ngā panonitanga o te āhua o te kiri (ina koa te mata) nā ngā panonitanga o ngā oko toto iti (ngā capillary). |
| ngoikore o te uaua | Te hekenga o te pakari o ngā uaua o te tinana. |
| Ētahi atu āhuatanga | Ngā mate haurangi, ngā hauātanga hinengaro, te whakaroa kōrero, te patupatu, te whai maihao tāpiri rānei, te piko nui o ngā hononga, me ngā huringa o te ngākau. |
Hemimegalencephaly
Ko te taha kotahi o te roro te nuinga o te wā ka pā ki tēnei āhuatanga. Ka taea te puta takitahi, me ētahi atu mate rānei.
Ngā tohu matua: ngā panonitanga ki te taha kotahi o te roro, te upoko nui, kāore i te ōrite, ngā haurangi , te pararutiki wāhanga i te taha kotahi o te tinana, me ngā whakaroa whanaketanga.
Lipomatosis Urutā Kanohi
Ko te āhuatanga matua o tēnei ko te nui ake o tetahi taha o te mata i tetahi atu.
Ētahi atu tohu: ngā pukupuku ehara i te matepukupuku e puta ana i roto i te kiko io (ina koa i te arero, i ngā ngutu rānei), te arero nui, ngā wheua kanohi nui, me te putanga wawe o ngā niho tuturu.
Me pēhea te whakahaere i tēnei āhuatanga?
Ka kino haere ngā PAINGA i roto i te wā. I runga i ngā wāhanga o te tinana e pāngia ana, tera pea ka uaua ki tāu tamaiti te hikoi me te mahi i ngā mahi o ia rā. Engari
ko te rongo pai he maimoatanga hei āwhina i te whakahaere i te mate me te whakangawari ake i te oranga o tāu tamaiti. Ehara tēnei i te mea me mahi ko koe anake. He mea nui kia mahi tahi koe me
te tākuta o tāu tamaiti me ētahi atu tohunga (hei tauira, he tohunga wheua, he tohunga roro) ki te matapaki me te mārama ki ngā kōwhiringa maimoatanga pai rawa atu mō tāu tamaiti. I ētahi wā, ka taea te whakahaere i ngā tohu mā roto i ngā mea pēnei i te pokanga, te rongoā, te whakaora tinana rānei.
Karere Tangohia ki te Kāinga
- Ehara te PROS i te mate kotahi, engari he kohinga o ngā āhuatanga onge maha e tipu rerekē ai ngā wāhanga o te tinana.
- Ka puta tēnei āhuatanga nā tētahi huringa ira, ehara i te he o ngā mātua.
- He rerekē ia tamaiti whai PROS. Ka rerekē rawa ngā tohu i waenga i tētahi tamaiti me tētahi atu.
- Ki te kite koe i tētahi āhua kore taurite, i tētahi tipu rerekē, i ētahi atu āhuatanga whakapae rānei i tētahi wāhanga o te tinana o tāu tamaiti, me kōrero tonu atu ki tō tākuta .
- Ahakoa kāore e taea te whakaora katoa i tēnei mate, kei reira ngā maimoatanga hei āwhina i te whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga o te tamaiti.
NGĀ PAINGA, PIK3CA, mate tipu nui, mate CLOVES, MCAP, tamariki, mate ira
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