Kei te pāngia tāu tamaiti e te Short Bowel Syndrome (SBS)? Me kōrero māmā noa iho tēnei!

He maha ngā wā ka pāngia tāu tamaiti e ngā mate puku pērā i te mate korere? Ahakoa te nui o te kai e hoatu ana e koe ki a ia, te āhua nei kāore ia e kai nui ana, ā, kāore ia e taumaha? Kua puta mai rānei ēnei tohu i muri i ētahi pokanga puku? Hei whaea, hei pāpā rānei, he mea noa kia tino mataku koe, kia āwangawanga hoki ina kite koe i ēnei mea. I tēnei rā ka kōrero tātou mō te Short Bowel Syndrome (SBS), he mate ka puta ai ēnei tohu, engari kāore i te tino kōrerohia.

He aha te Short Bowel Syndrome (SBS)?

Ko te Short Bowel Syndrome (SBS) he āhuatanga e kore ai e taea e te tinana o tāu tamaiti te mimiti i ngā matūkai me ngā wai e ranea ana. Nā te mea kua ngaro tetahi wāhanga o te whekau iti o te tamaiti, kāore rānei e mahi tika.

Ka taea tēnei mate te noho mai i te whānautanga mai. Waihoki, i ētahi wā ka puta te SBS i muri i te tangohanga o te nuinga o te whekau iti mā te pokanga nā tētahi atu mate hauora. Ka kiia hoki tēnei ko te "Short gut syndrome".

Nā, he aha te mahi a tēnei whekau iti?

Hei mārama ake i tēnei, me ako tātou i te tuatahi mō te whekau iti, te toa o tā tātou pūnaha nakunaku. Whakaarohia te whekau iti hei whitiki kawe roa i roto i te wheketere. Ka huri te kai e kainga ana e tātou hei wai i roto i te puku, kātahi ka haere i tēnei whitiki. I a tātou e haere ana, ko ngā pakitara o te whekau, e mahi ana pērā i ngā kaimahi wheketere, ka wehea ngā mea pai katoa o taua kai — arā, ngā matūkai nui pērā i ngā pūmua, ngā warowaihā, ngā ngako, ngā huaora, te rino, te konupūmā, me ngā wai — ka tāpirihia ki te toto. Ko te toenga, kāore e whai hua ki te tinana, ka haere ki te whekau nui ka tukuna hei paru.

E toru ngā wāhanga matua o te whekau iti:

• Duodenum: Koinei te wāhanga poto rawa i muri i te puku.
• Jejunum: Koinei te wāhanga o waenganui.
• Ileum: Koinei te wāhanga roa rawa atu. Ka mutu ki te whekau nui.

He pēhea te pānga o te SBS ki te whekau iti?

Whakaarohia, he aha te mea ka tupu mēnā ka tangohia e tātou tētahi wahi nui mai i te whitiki kawe i taua wheketere i kōrerotia e tātou? Ka tere rawa te paunga o ngā taonga (arā, te kai) i te whitiki kawe. Kāore e ranea te wā o ngā kaimahi (ngā pakitara o ngā whekau) ki te wehewehe i ngā mea pai (kai) mai i ngā taonga. Ko te mea anō tēnei ka tupu i roto i te SBS.

I te nuinga o te wā, ka whānau mai he pēpi me te whekau roa ake i te mea noa. He rite ki tētahi wāhanga tāpiri. Ahakoa ka tangohia tētahi wāhanga iti o te duodenum me te jejunum i te wā pokanga, ka taea e te ileum te tango i te mahi a ngā wāhanga e rua me te whakataurite i te mimiti o ngā matūkai.

Heoi, he nui ake te wāhanga o te jejunum, o te ileum rāneiKi te tangohia mā te pokanga, ka tino uaua ki te tinana te whiwhi i te nui o ngā matūkai. Nā te poto o te tawhiti e haerea ana e te kai, ka tino poto te wā e tika ana kia nakunakuhia, kia mimitihia hoki e te tinana.

Ki te kore tēnei āhuatanga e rongoatia, ka pāngia te tamaiti e ngā āhuatanga kino pērā i te kore kai pai, ā, ka mōrearea pea te ora.

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Me pēhea te mōhio mēnā he SBS tō te tamaiti? He aha ngā tohu?

Ki te whakapae koe kei te pāngia tō tamaiti e tēnei mate, kia tūpato ki ēnei tohu. Ki te pāngia koe e tētahi, e ētahi rānei o ēnei tohu karapīpiti, me toro atu ki te tākuta tonu.

He aha i pāngia ai ngā tamariki e tēnei āhuatanga?

E ai ki te ingoa, ko te take matua o tēnei ko te aukati o te puku. E rua ngā momo take matua e whai wāhi ana ki tēnei:

1. Ngā raruraru whānau: Ka whānau mai ētahi tamariki me ētahi āhuatanga hē o te puku.

• Te whakaiti whānautanga o te roa o te whekau.
• Te whānautanga kāore he wāhanga o te whekau.
• Ko te atresia o te whekau he āhuatanga kāore te whekau e tino whanake i roto i te kōpū. E mōhiotia ana tēnei i roto i te rongoā ko te "atresia o te whekau".

2. Hei pānga taha o te pokanga: Ko ētahi mate hauora kino e hiahia ana kia tangohia te wāhanga o te whekau iti o te tamaiti i roto i te pokanga. Ka puta anō hoki te SBS.

He aha ngā āhuatanga e hiahia ana kia tangohia tetahi wāhanga o te whekau i roto i te pokanga?

• Te enterocolitis necrotizing: Ka puta tēnei ina heke te rere o te toto ki ngā pakitara o te puku, ka mate ai ētahi wāhanga o te puku. He mea noa tēnei āhuatanga i roto i ngā pēpi whānau wawe.
• Gastroschisis: Koinei te wā e puta ai ngā whekau ki waho o te tinana i te wā e whanake ana te pēpi i roto i te kōpū.
• Volvulus: He piko o te whekau. Ka taea e tēnei te tapahi i te rere o te toto, ā, ka kino hoki taua wāhi.
• Te mate a Crohn: He mate mumura mau tonu o te pūnaha nakunaku.
• Te whakaurunga o roto: Ka mau tetahi wāhanga o te whekau ki roto i tetahi atu wāhanga.

He aha ngā raruraru pea ka pā mai i te SBS?

Ki te kore e rongoatia tika te SBS, ka pāngia te tamaiti e ngā raruraru maha, ko ētahi he tino kino.

• Matewai: Te pupuri tonu i te wai i roto i te tinana nā te mea kāore e taea e te tinana te mimiti i te nui o te wai e hiahiatia ana.
• Te kore kai pai: Te hekenga taumaha me te kore e taea te whakanui ake i te taumaha nā te kore e mimiti pai ngā matūkai.
• Te korenga o ngā huaora me ngā kohuke: Te korenga o ngā huaora nui (A, D, E, K, B12) me ngā kohuke (konupūmā, konupora, konutea) mō te tinana.
• Te ponana nāpi kino: Te riri kiri nui e hua mai ana i te nekeneke pinepine o te puku me te waikawa nui o ngā tūtae.
• Mate ate: Ka pakaru te ate nā te roa o te kai e werohia ana ki roto i te uaua (kai IV) me ētahi atu take.
• Ngā kōhatu whatukuhu: Nā te kore taurite o te mimiti o te konupūmā me te oxalate.
• Te tipu nui rawa o ngā huakita: He tipu nui rawa o ngā huakita kino i roto i te whekau iti.
• Ngā ātete kai: Hei tauira, te kore e taea te nakunaku i ngā hua miraka kei roto te lactose.

Nō reira, he mea tino nui kia rapu tohutohu hauora tonu atu mēnā ka puta ngā tohu o te SBS ki tāu tamaiti, inā koa i muri i te pokanga whekau.

Me pēhea te tautuhi a ngā tākuta i tēnei mate?

Ina haria e koe tāu tamaiti ki te tākuta, ka pātai tuatahi ia mō ngā tohumate o te tamaiti me tōna hītori hauora whānau. Kātahi ka tirotirohia te tamaiti. He maha ngā whakamātautau ka mahia hei whakaū i te mate me te kimi i te tino take:

• Ngā whakamātautau toto: Tirohia te toto o te tamaiti mō ngā mea pēnei i te taumata o te huaora me te kohuke, me te anemia.
• Whakamātautau ngako paru: Ka tirohia te nui o te ngako kāore anō kia nakunaku i roto i te paru.
• Ngā hihi-X: Hei tirotiro i te āhua o ngā whekau. Tērā pea ka hoatu he wai motuhake ki a koe, pērā i te barium, ā, ka tangohia pea he hihi-X.
• Matawai CT: Tikina he pikitia mārama ake o ngā whekau me ētahi atu whekau o te puku.

He aha ngā maimoatanga mō te SBS?

E rua ngā whāinga matua mō te rongoā i te tamaiti e pāngia ana e te SBS. Ko tētahi he whakarato i te kai e hiahiatia ana e te tamaiti hei tipu. Ko tētahi he whakahaere i ngā tohu pēnei i te mate korere. He maha ngā tikanga rongoā e whakamahia ngātahitia ana hei whakatutuki i tēnei.

1. Ngā huringa kai

Koinei te wāhanga tino nui. I runga i te āhua o te tamaiti, ka mahi tahi ngā tākuta me ngā tohunga kai ki te waihanga i te mahere kai tino tika mō te tamaiti.

• Ngā huringa kai: Mena ka taea e tāu tamaiti te kai mā te waha, ka tūtohu pea tō tākuta kia whāngaihia ia ki ētahi kai iti i ētahi wā i te rā . Ka tūtohu pea ia kia whakaitihia ngā kai he nui te ngako, he huka māmā, he muka hoki, engari me tuku he kai nui ake te kaha o te kai, he nui te warowaihā me te pūmua.
• Te Kai Māmā Katoa (TPN): Ko te tikanga tēnei ko te hoatu tika i ngā matūkai katoa (wai, huka, pūmua, ngako, huaora) ki roto i te uaua hei wai, me te karo katoa i te pūnaha nakunaku o te tamaiti. Ka whakamahia tēnei tikanga i muri i te pokanga puku, i te wā rānei kāore e taea e te tamaiti te kai mā te waha.
• Kai Pūmua: I roto i tēnei tikanga, ka whakauruhia he ngongo ngāwari mā te ihu, tika atu rānei ki roto i te puku, i te whekau iti rānei, ā, ka tukuna he kai wai mā roto. Mā tēnei tikanga ka nui ake te kai hei tāpiri atu ki te nui o te kai e kainga ana e te waha.

2. Ngā rongoā

He maha ngā rongoā e whakamahia ana hei whakahaere i ngā tohu me te whakapai ake i te mimiti kai.

• Ngā rongoā paturopi: Whakahaerehia te tipu nui o ngā huakita i roto i te puku.
• Ngā rongoā whakaiti waikawa o te puku (ngā aukati papu proton, ngā aukati H2): Whakaitihia ngā raruraru e puta mai ana i te waikawa o te puku.
• Ngā rongoā ārai mate korere: Ka whakaroa i te tere o te neke o te kai i roto i ngā whekau, kia roa ake ai te wā e mimiti ai ngā matūkai.
• Ngā homoni tipu: Whakapai ake i te mimiti o ngā matūkai e te whekau.

3. Pokanga

Tērā pea ka hiahiatia ētahi atu pokanga mō ētahi tamariki hei whakapai ake i te mahi a te puku. Ko ētahi o ēnei ko:

• Te whakanui ake i te roa o te whekau (mā ngā tikanga pokanga motuhake).
• Te whakaroa i te tere o te nekehanga o te kai.
• Te tango i ngā aukati o te puku.

I ngā āhuatanga tino kino, me whai whakawhitinga whekau/ate pea te tamaiti.

Te tumanako pai mō te urutaunga puku

Koinei te tumanako nui rawa atu mā ngā mātua o ngā tamariki e pāngia ana e te SBS. Ko te urutaunga o te puku te tukanga e whakapai ake ai te toenga o te puku i tana mahi i roto i te wā i muri i te tangohanga o tētahi wāhanga o te puku.

I roto i tēnei, ka matotoru te pakitara o roto o te whekau e toe ana, ā, ka roa ake, ka matotoru ake ngā hanganga rite ki te maihao e kiia nei ko ngā villi e mimiti ana i ngā matūkai. Mā tēnei ka taea e te whekau iti e toe ana te mimiti i ngā matūkai kia pai ake i mua. Ka tino angitu tēnei tukanga urutau, nā te mea ka tipu haere tonu ngā whekau o ngā tamariki nohinohi tae noa ki te wā taitamariki.

Kei te tere ake te tukanga urutau nā ngā kano ārai mate pēnei i te teduglutide, ā, kei te āwhina hoki ki te whakamutu i ngā tamariki i te kai whāngai uaua pēnei i te TPN.

He aha tāu e taea ai hei mātua?

Ahakoa he uaua tēnei haerenga, kāore koe i te mokemoke. He tīma pai hei āwhina i a koe ki te whakahaere i te hauora o tāu tamaiti.

• Tākuta tamariki
• Tākuta puku tamariki
• Kaitohutohu tamariki
• Taote tākuta tamariki

Ko tāu mahi matua he whai i ngā tohutohu a tēnei tīma hauora. He mea nui kia tino tupato ki te whāngai i te tamaiti, te hoatu rongoā i te wā tika, ā, ki te whakamahi koe i ngā maimoatanga pēnei i te TPN, he mea nui kia tino tupato ki te pupuri i a ia kia ma.

Ki te mea he pātai, he āwangawanga rānei āu, kaua e wehi ki te pātai ki tō tākuta. Pātai atu ki a koe, "He aha te mahi a tēnei rongoā?", "He pai tēnei kai mā taku pēpi?", "He aha taku e tumanako ai i muri mai?" hei whakamarie i tō hinengaro.

Ka noho te SBS hei mate mō ētahi tamariki mō ā rātou ake oranga. Heoi, mō ētahi tamariki, ka tino pai ake te āhua i roto i te wā. Mā te maimoatanga hauora tika, te kai pai, me te manaaki aroha, ka taea e te nuinga o ēnei tamariki te noho noa, te noho harikoa.