Kei te pāngia tō tamaiti e te mate roro? Kua kite pea koe he pakari rawa ngā uaua o ngā peka, inā koa ngā waewae, o ēnei tamariki. I roto i ngā kupu hauora, ka kiia tēnei he 'spasticity'. Nā tēnei pakari, he tino uaua ki te tamaiti te hikoi, te oma, te pekepeke, me te mahi i ngā mahi o ia rā. Nō reira, i tēnei rā ka kōrero tātou mō tētahi pokanga motuhake e mahia ana hei otinga tuturu mō tēnei raruraru. Ko te Selective Dorsal Rhizotomy, ko te pokanga SDR rānei te poto.
He aha te tikanga o te pokanga SDR?
Ko te Selective Dorsal Rhizotomy (SDR) he tikanga pokanga e whakaiti ana i te pakari o te uaua (spasticity) i roto i ngā tamariki e pāngia ana e te cerebral palsy. Ahakoa he tikanga tino uaua, i roto i ngā kupu māmā, ko te tapahi me te tango i ētahi o ngā muka io sensory i te taha o raro o te tuaiwi o te tamaiti e whakapūmau ana i te uaua o ngā waewae.
Ko te mea nui, kāore tēnei pokanga e pāngia ai te tamaiti e te pararutiki. Kāore hoki e pā tika ki te nekehanga o ngā waewae. Ka tukuna noa ngā uaua e piri rawa ana.
Engari kotahi te mea hei maumahara māu, kia whiwhi ai i ngā hua pai rawa atu mai i tēnei pokanga, me whai te tamaiti i te whakaora kaha me te whakaora tinana i muri i te pokanga. Waihoki, ehara i te mea ko ngā tamariki katoa e pāngia ana e te Cerebral Palsy e tika ana mō tēnei pokanga.
Ko wai te hunga e tika ana kia pokangahia? He pai mō ngā tamariki katoa?
Ko te pokanga SDR te nuinga o te wā hei rongoā mō te pakari o te uaua (spasticity) i puta mai i te cerebral palsy.
E mōhio ana koe, ko te pararutiki roro (CP) he mate e pā ana ki te kaha o te tamaiti ki te whakahaere i ngā nekehanga o tōna tinana. Ka puta mai i te kino o ngā wāhanga o te roro e whakahaere ana i te nekehanga me te taunga. He maha ngā tamariki whai CP he mate e kiia nei ko te 'spasticity'. Ko te tikanga o tēnei ka tere te kume o ētahi uaua ina ngana te tamaiti ki te neke, ina tū noa rānei. Ka uaua pea te hikoi a te tamaiti, te mahi i ngā mahi o ia rā, ā, i ētahi wā ka mamae anō hoki.
Ko te kaupapa matua o te pokanga SDR ko:
- Te pararutiki roro diplegic spastic: E pā ana tēnei ki ngā tamariki he pakari ngā uaua e pā nui ana ki ngā waewae.
- Te pararutiki roro whā-whatu tino uaua: E pā ana tēnei ki ngā tamariki e tino pakari ana ngā uaua e pā ana ki ngā waewae e whā.
Āe, me pēhea te whakaiti i te pakari o te uaua e tēnei pokanga?
Hei mārama ki tēnei, me whakaaro tātou ki tō tātou pūnaha io mō tētahi wā poto. Ko te kaha o ngā uaua o tō tātou tinana e whakahaerehia ana e te mahi a te pūnaha io kei roto i te taurakira.
Whakaarohia he pūnaha io tō tātou tinana, pērā i te waea.
1. Ngā io Pārongo: Ka haria e ēnei ngā mōhiohio mai i ngā uaua ki te taurakira.
2. Ngā Io Pūkaha: Ka tukuna e ēnei ngā whakahau mai i te taurakira ki ngā uaua kia "kirikiri pēnei".
I te nuinga o te wā, ka pai te whakahaere a tō tātou roro i te rere o tēnei karere. Ko te tikanga ka taea e tātou te whakahaere i ō tātou uaua e ai ki tā tātou e hiahia ana. Engari i roto i te Cerebral Palsy, ka heke te kaha o te roro ki te whakahaere i ēnei io. Ko te mea ka tupu ko te kaha rawa o ētahi io pūoko, ā, ka tukuna tonutia ngā tohu hē ki ngā uaua, me te kī atu ki a rātou kia "whakapūmau, whakapūmau."
Anei ngā mea ka tupu i te wā o te pokanga SDR:
Ka tīpakohia e te taote pokanga, ā, ka tapahia ngā pūtake io tairongo anake e meinga ana te uaua kia piri, e whakaohokia ana hoki. Ka whakamahia he whakamātautau motuhake (EMG) hei kimi ko ēhea io e mahi tika ana, ko ēhea hoki e tuku ana i ngā tohu hē. Mā tēnei ka taea anake te whakaiti i te piri o te uaua me te kore e pā ki ētahi atu mahi.
Mā tēnei, ina whakamāmāhia te pakari o te uaua, ka taea e ngā uaua o raro te tīmata ki te mahi tika. Ka whakapai ake tēnei i te nekenekehanga me te mahi a te tamaiti. Ka āwhina hoki ki te ārai i ngā āhua rerekē o ngā wheua me ngā hononga ka puta mai i te pakari roa o te uaua.
Me pēhea te whakarite i mua i te pokanga?
Nā te mea kāore e pai te pokanga SDR mō ngā tamariki katoa, ka arotakehia tāu tamaiti e tētahi rōpū tohunga hei whakatau mēnā he pai mōna. Ko ngā tohunga e whai ake nei ka uru atu ki tēnei tukanga:
| Tākuta tohunga | Tā rātou tūranga |
|---|---|
| Taote Pokanga Tamariki | Mā te tohunga whai wheako ki te pokanga SDR ngā waewae me ngā uaua o te tamaiti e tirotirohia kia mōhio ai mēnā he pai mō te pokanga. |
| Taote Taote Tuitui Tamariki | Mena he raruraru pēnei i te whakarerekētanga o te wheua, te whakaheke rānei o te uaua, ka tirohia mēnā e hiahiatia ana ētahi atu pokanga. |
| Kaiwhakaora Tinana | Ka inehia te kaha me te mahi a ngā uaua o ngā waewae o te tamaiti. |
| Kaiwhakaora Mahi | Ka aromatawaitia te kaha ki te mahi i ngā mahi o ia rā pēnei i te hikoi, te kai, me te kakahu. |
Ka tirotirohia te tamaiti e ēnei tāngata katoa, ka huihui mai hei rōpū ki te whakatau whakamutunga mēnā ka whai hua te pokanga SDR mō te tamaiti.
Hei tāpiritanga, me whai pea koe i ētahi atu whakamātautau i mua i te pokanga:
- Ka whakahaerehia e ngā kaiwhakaora tinana me ngā kaiwhakaora mahi he aromatawai hōhonu hei aromatawai katoa i ngā āheinga tinana o te tamaiti. Ka hopukina e rātou ngā nekehanga o te tamaiti me te whakamahere i ngā maimoatanga e tika ana i muri i te pokanga.
- He matawai MRI o te roro hei whakarite kāore he mate pūnaha io kē atu.
- Mena he raruraru pūnaha io anō ōu, me toro atu ki tētahi tākuta roro o ngā tamariki .
- Tūtaki anō ki te taote pokanga roro ki te kōrero mō ngā mōrearea o te pokanga me te wā whakaora.
- Tirohia te tohunga whakamoe kia mōhio ai koe kei te haumaru te rongoā whakamoe mō tāu tamaiti.
Me pēhea te mahi i te pokanga i te taahiraa i te taahiraa
Anei te tikanga o te pokanga SDR:
1. Whakamoemiti: Tuatahi, ka hoatu e te tākuta whakamoemiti te rongoā whakamoe whānui ki te tamaiti. Nō reira ka moe pai te tamaiti i te wā e pokangahia ana, ā, kāore e mamae.
2. Tapahi: Ka tapahia e te taote pokanga roro he tapahi iti i waenganui o te tuara o raro o te tamaiti.
3. Te whakaaturanga o ngā io: Mā tēnei tapahi, ka huakina te dura e hipoki ana i te taurakira, ka haere mā roto i ngā uaua me ngā wheua, ā, ka kitea ngā muka io o raro.
4. Te Wehenga o ngā Io: Muri iho, ka wehea e te taote pokanga ngā io nekeneke me ngā io tairongo tetahi i tetahi. Ka tiakina ngā io nekeneke mai i ngā kino katoa.
5. Te tautuhi i ngā io hē: Ka piri ngā irahiko ki ngā pakiaka io tairongo, ā, ka mahia te electromyography (EMG).Mā te mīhini e kīia nei he whakaohooho hiko ka tukuna te whakaohooho hiko. Mā tēnei ka taea e tātou te tautuhi ko ēhea ngā io e whakawhāiti ana i te uaua, ko ēhea e tuku tohu hē ana, me ēhea hoki e mahi tika ana.
6. Te tapahi io: Me te tino tupato, ka tapahia he ōrau motuhake o ngā io pūoro rerekē kua tautuhia. He rerekē ngā io me te nui o te mea ka tapahia i ia tamaiti, i ia tamaiti.
7. Te kati i te tapahi: Kia oti te tapahi io, ka tuia te tapahi papatahi i te papatahi.
8. Te Whakaora: Whai muri i te pokanga, ka whakawhitia te tamaiti ki te wāhanga tiaki nui (ICU) ki tētahi rūma whakaora motuhake rānei, ā, ka tirotirohia tatatia e te tīma hauora.
E whā, e rima rānei hāora te roa o tēnei pokanga.
He aha ngā mea ka tupu i muri i te pokanga?
Me noho ngā tamariki ki te hōhipera mō te rima rā i muri i te pokanga. Mō ngā haora 24-48 tuatahi, me noho tonu te tamaiti ki te moenga. Ka tīmata te whakaora tinana i roto i ētahi rā i muri i te pokanga.
He aha ngā painga o tēnei pokanga?
Ka rerekē pea ngā hua o te pokanga SDR i runga i te āhua o te tamaiti. Waihoki, ko te angitu o te pokanga e whakawhirinaki katoa ana ki te maimoatanga whakaora tinana kaha e mahia ana i muri i te pokanga.
| Te āhua o te tamaiti | Ngā painga pea |
|---|---|
| Spastic Diplegic CP (ngā tamariki he nui ake te pānga o ngā waewae) |
|
| Spastic Quadriplegic CP (ngā tamariki e pāngia ana e ngā waewae e whā) |
|
Pērā i ngā pokanga katoa, he tūponotanga kei reira?
Ae, pērā i ngā pokanga katoa, he mōrearea ētahi o ngā pokanga SDR, engari he tino onge ngā raruraru tuturu.
| Momo mōrearea | He aha pea |
|---|---|
| Ngā raruraru poto | |
| Mate pāwera | Mate urutā pokanga. |
| Te toto | Te toto nui i te wā o te pokanga, i muri rānei i te pokanga. |
| Te turuturu o te wai CSF | Te turuturu o te wai cerebrospinal (CSF) huri noa i te taurakira. |
| Ngā raruraru tuturu (engari he tino onge) | |
| Te nui o te rongoā | Te pāwera nui ki te pā me te mamae. |
| Te ngaronga o te mana whakahaere mimi | Te kore e taea te whakahaere i te mimi. |
| Te ngaronga o te mana whakahaere puku | Te kore e taea te whakahaere i ngā nekehanga o te puku. |
| ngoikore | Te ngoikore, te ngaro rānei o te kaha hikoi o mua. |
Ka kōrero taipitopito te tīma hauora o tāu tamaiti ki a koe mō ēnei mōrearea katoa i mua i te pokanga.
Te wā whakaora me te hiranga o te whakaora tinana
Koinei te wāhanga tino nui, tino hira hoki o te angitu o te pokanga SDR. Ko te pokanga te taahiraa tuatahi noa iho o te haerenga. He mea nui te whakaora kia tutuki ai ngā hua tuturu.
Ka tīmata te whakaora tinana me te whakaora mahi i roto i ētahi rā i muri i te pokanga. Me haere te tamaiti ki ēnei maimoatanga i ētahi rā o te wiki mō ngā marama e toru ki te ono i muri i te pokanga.
- Kaiwhakaora Tinana: Ngā mahi whakakori tinana hei whakapakari, hei totoro, hei whakapai ake i te whānuitanga o te nekehanga o ngā uaua o te tamaiti. I te tīmatanga, ka whakahaerehia e te kaiwhakaora ngā mahi whakakori tinana, ā, i te wā e ora ake ana te tamaiti, ka whai wāhi kaha te tamaiti ki ngā mahi whakakori tinana.
- Kaiwhakaora Mahi: Ka āwhina i te tamaiti ki te mahi i ngā mahi o ia rā (hei tauira, te whakakakahu, te tākaro) kia māmā ake, kia takitahi hoki.
Ko ngā whāinga matua o ēnei mahi whakangungu ko:
- Te pikinga o te pūngao.
- Te whakawhanake i te taurite me te tū tika i te wā e noho ana, e tū ana rānei.
- Te whakarite i ngā waewae mō te tū.
- Te whakangungu kia maeneene ake te mahi i ngā nekehanga, pēnei i te tū mai i te tūnga noho.
He mea noa ki ngā mātua te mataku ina rongo rātou mō te pokanga. Engari kia maumahara, ko te tīma hauora o tāu tamaiti ngā tohunga o tēnei mara. Mā rātou koe me tāu tamaiti e whakarite mō tēnei pokanga. Kaua e mangere ki te kōrero ki a rātou mō ngā pātai, ngā āwangawanga rānei kei a koe.
Āhea koe me kōrero ki te tākuta?
Ki te kite koe i ētahi tohu o ngā raruraru i muri i te kawe mai i tō pēpi ki te kāinga i te hōhipera, waea atu ki tō tākuta tonu.
- Mena he whero te tapanga, he pupuhi, he puta mai rānei he pūhā (he tohu tēnei nō te mate).
- Mena he nui te kirika o te tamaiti.
- Ki te ngaro tō kaha ki te whakahaere i tō mimi, i tō tūtae rānei.
Ki te kite koe i ētahi tohu rerekē pēnei i ēnei, rapua tonutia he tohutohu hauora.
Karere Tangohia ki te Kāinga
- He pokanga motuhake te SDR e mahia ana hei whakaiti i te pakari o te uaua (spasticity) i roto i ētahi tamariki e pāngia ana e te Cerebral Palsy.
- Ko tēnei ko te tapahi motuhake i ngā io pūoro e whakaohokia ana me te kore e hiahiatia. Ka whakaitihia te pakari o te uaua mō ake tonu atu.
- Kāore tēnei pokanga e pai mō ngā tamariki katoa. Ka whiriwhiria te tamaiti mō tēnei mahi i muri i te aromatawai hōhonu a te rōpū tākuta tohunga.
- Kia angitu ai te pokanga, he mea nui te whakaora tinana kaha, me te whakaora mahi tonu i muri i te pokanga. Koinei te mea tino nui.
- I mua i te pokanga, kōrerohia ngā painga me ngā mōrearea ki tō tākuta, kia mārama hoki ki aua painga.
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