He mate roro tō tāu tamaiti? Me ako tātou mō tēnei pokanga SDR (Selective Dorsal Rhizotomy)

Hei mātua, he aha te pouri o tō ngākau ina kite koe i tāu tamaiti e pāngia ana e te mate roro , e uaua ana ki te hikoi, ki te oma, ki te pekepeke, me te mahi i ngā mahi o ia rā? He tino uaua ki te mātakitaki i te tamaiti e pāngia ana e te tino pakari o ngā waewae, arā, te pakari o ngā uaua (spasticity), kāore? I tēnei rā kei te kōrero tātou mō tētahi pokanga motuhake ka taea te āwhina i aua tamariki.

He aha te Rhizotomy Tua-Tīpako (SDR)?

Ki te kī māmā noa, ko te Selective Dorsal Rhizotomy (SDR) he tikanga pokanga e mahia ana hei whakaiti pumau i te pakari o te uaua (spasticity) i roto i ngā tamariki e pangia ana e te Cerebral Palsy.

Ko tēnei he tapahi me te tango i ētahi o ngā muka io ira i te tuaiwi o raro e whakakeke ana i ngā waewae o te tamaiti. Kaua e manukanuka, e kore tēnei pokanga e whakararuraru i ngā waewae o te tamaiti. Kāore hoki e pā ki te nekehanga o ngā waewae.

Engari kotahi te mea hei maumahara: Hei whiwhi i ngā hua pai rawa atu mai i tēnei pokanga, me whai koe i ngā kaupapa whakaora tinana me ngā kaupapa whakaora i muri i te pokanga. Waihoki, kāore tēnei pokanga e pai mō ngā tamariki katoa e pāngia ana e te pararutiki roro.

He aha ngā āhuatanga e rongoatia ana e te pokanga SDR?

Ka whakamahia e ngā tākuta tēnei pokanga SDR hei rongoā i te pakari o te uaua (spasticity) i roto i ngā tamariki e pāngia ana e te cerebral palsy.

Ko te pararutiki roro ( CP ) he āhuatanga e pā ana ki te kaha o te tamaiti ki te whakahaere i ō rātou uaua. 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 āhuatanga e kiia nei ko te spasticity . Ko te tikanga o tēnei, ina ngana te tamaiti ki te neke, i ētahi wā rānei ka tū noa, ka kōpiri ohorere ētahi o ngā uaua ka pakari. Ka taea e tēnei te whakauaua i ngā mea pēnei i te hikoi , te mamae, me te whakararuraru i ngā mahi o ia rā .

Ko te nuinga o te wā, ko te pokanga SDR e mahia ana mō ngā tamariki e pāngia ana e te Spastic Diplegic Cerebral Palsy, e rua noa iho ngā waewae e pāngia ana, me te Spastic Quadriplegic Cerebral Palsy, e tino pāngia ana ngā peka e whā.

He pēhea te mahi a tēnei pokanga?

Whakaarohia, ko te piripono noa o ngā uaua o tō tātou tinana e whakahaerehia ana e tētahi tukanga i roto i te pūnaha io o te taurakira. I roto i tēnei, ka kawea mai e te io tairongo ngā kōrero mai i te uaua ki te taurakira, kātahi ka hoki te io nekeneke ki taua uaua ka meinga kia kōpiri.

I te nuinga o te wā, ka whakahaerehia tēnei tukanga e ngā karere mai i tō tātou roro. Ko te tikanga ka taea e tātou te whakahaere i ō tātou uaua e ai ki tā tātou e hiahia ai. Heoi, i roto i te pararutiki roro, ka whakaitihia te kaha o te roro ki te whakahaere i tēnei. Nō reira, ka pēhia tonutia, ka pakari hoki ētahi uaua.

Ka taea e te pokanga SDR te whakakore i tēnei pakari nui (spasticity). Ka tīpakohia e te taote pokanga, ā, ka tapahia noa ngā pakiaka io tairongo rerekē e puta ai tēnei pakari. Koia te take e taea ai te whakaiti i te pakari me te kore e pā ki ētahi atu mahi. I te wā o te pokanga, ka whakamatautauria ēnei io katoa kia kitea ai ko ēhea ngā io e mahi pai ana, ā, ko ēhea ngā io te raruraru.

Kia kore rawa tēnei pakari, ka taea e ngā uaua o raro te tīmata ki te mahi i runga i te āhua noa. Kātahi ka pai ake te nekehanga o te tamaiti, pērā i te hikoi. Waihoki, ki te mau tonu tēnei pakari, ka taea te ārai i te tūponotanga o te whara o te uaua me ngā āhua rerekē o ngā hononga me ngā wheua (ngā kirimana) mā tēnei pokanga.

Me pēhea te whakarite i tētahi tamaiti mō te pokanga SDR?

Nā te mea kāore e pai te pokanga SDR mō ngā tamariki katoa, ka whai i tētahi tukanga tirotiro motuhake tāu tamaiti kia kitea ai mēnā he painga mōna. Mō tēnei, ka tirotirohia te tamaiti e ētahi tākuta motuhake.

Ka tirotirohia te tamaiti e ēnei tāngata katoa, ā, ka mahi tahi hei rōpū ki te whakatau mēnā he tika te pokanga SDR mō te tamaiti. Hei tāpiri, ka taea te whakahaere i ētahi atu whakamātautau:

• Hei whakamahere i te maimoatanga i muri i te pokanga, ka hopukina e ngā kaiwhakaora tinana me ngā kaiwhakaora mahi ngā nekehanga me ngā mahi a te tamaiti i roto i te ataata.
• He whakamātautau MRI o te roro hei whakarite kāore he mate pūnaha io kē atu.
• Tūtaki ki tētahi taote pokanga roro hei whakamārama i ngā mōrearea o te pokanga me te tukanga whakaora.
• Me tūtaki ki tētahi tohunga whakamoe kia mōhio ai he haumaru te whakamoe mō te tamaiti.

He aha ngā mea ka tupu i te wā o te pokanga?

Koinei ngā mahi e mahia ana i te wā o te pokanga SDR.

1. Whakamoemiti: Ka hoatu e te tākuta whakamoemiti te rongoā whakamoe ki te tamaiti. Mā tēnei ka hiamoe te tamaiti, ā, ka kore he mamae i te wā e pokangahia ana.

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 roto i taua tapahi, ka hangaia he "matapihi" iti i waenganui i ngā wheua o te tuaiwi me te kiriuhi (dura) e hipoki ana i te taurakira, ā, ka kitea ngā muka io i raro iho.

4. Te wehenga o ngā io: Muri iho, ka wehea ngā io nekeneke me ngā io tairongo. Ka tiakina ngā io nekeneke hei ārai i te kino.

5. Whakamātautau io: Mā te whakamahi i ngā irahiko, ka whakamahia he tikanga e kiia nei ko te electromyography (EMG) hei whakaoho i ngā io pūoro. Ka taea e tēnei te āwhina ki te tautuhi ko ēhea ngā io rerekē e puta ai te spasticity me ēhea ngā io noa.

6. Te tapahi io:Kātahi ka tapahia he ōrau o ngā io pūoro rerekē e kitea ana. Ka rerekē te nui o ngā io e tapahia ana i ia tamaiti, i ia tamaiti.

7. Te tuitui i te tapahi: Kia oti te tapahi io, ka tuituia te tapahi mā te paparanga i te paparanga.

8. Rūma whakaora: Whai muri i te pokanga, ka tirotirohia te tamaiti i roto i te Wāhanga Tiaki Kaha (ICU).

E whā, e rima rānei hāora te roa o tēnei pokanga.

He aha ngā mea ka tupu i muri i te pokanga? Ā, he aha ngā painga?

I muri i te pokanga, me noho te tamaiti ki te hōhipera mō te rima rā pea. I roto i ngā haora 24-48 tuatahi, me noho tonu te tamaiti ki te moenga. Ka tīmata te whakaora tinana i roto i ētahi rā.

Ngā painga mō ngā tamariki e pāngia ana e te CP (Spastic Diplegic CP) e pā ana ki ngā waewae anake:

• Te whakapai ake i te hikoi me te nekenekehanga.
• Te kaha ake o te manawanui.
• He iti ake ngā hinganga, he pai ake te taurite.
• Te tū pai o te noho me te tū.
• Te whakaiti i te mamae i puta mai i te spasticity.

Ngā painga mō ngā tamariki e pāngia ana e te Spastic Quadriplegic CP:

• Te kaha ki te noho pai ake mō ngā wā roa.
• Te āheinga ki te whakamahi i te nohoanga wharepaku.
• Te āheinga ki te whakahaere takitahi i te tūru wīra.

Waihoki, nā te mea kua kore e pakari ngā uaua, ka māmā ake mā ngā kaitiaki te whakawhiti i te nāpi o te pēpi me te whāngai i a ia.

He aha ngā mōrearea o tēnei pokanga?

Pērā i ngā pokanga katoa, he iti noa ngā mōrearea o ngā SDR.

Ngā raruraru poto:

• Mate pāwera
• Te toto
• Te turuturu o te wai cerebrospinal (CSF)

Ngā raruraru tuturu (tino onge):

• Te pāwera nui ki te pā (hyperesthesia), i ētahi wā ka haere tahi me te mamae.
• Te ngaronga o te mana whakahaere mimi (te kore e taea te pupuri i te mimi).
• Te ngaronga o te mana whakahaere o te puku (te kore e taea te pupuri i te puku).
• Te ngoikore, te ngaro rānei o te kaha o mua ki te hikoi.

Kaua e manukanuka, mā te tīma hauora o tāu tamaiti e whakamārama atu ēnei mōrearea katoa ki a koe i mua i te pokanga.

Te wā whakaora me te hiranga o te whakaora tinana

He mea tino nui te whakaora tinana me te whakaora mahi i muri i te pokanga. He mea nui tēnei kaupapa whakaora tinana kia tutuki ai ngā hua o te pokanga.

Ka mahi te kaiwhakaora tinana i ngā mahi whakakori tinana hei whakapakari, hei totoro, hei whakapai ake i ngā uaua o te tamaiti. Ka āwhina te kaiwhakaora mahi i te tamaiti kia tū motuhake ake i te kāinga me te kura.

I mua i te wehenga atu o tāu tamaiti i te hōhipera, ka whakamāramahia e ngā kaiwhakaora hinengaro ngā mahi whakakori tinana me ngā maimoatanga e tika ana kia mahia e koe ki te kāinga. Me mahi koe i ēnei maimoatanga i ētahi rā o te wiki mō te 3-6 marama.

Ki te kite koe i ētahi tohu o tētahi raruraru i muri i te pokanga o tāu tamaiti, pērā i te pangia o te patunga, te ngaronga rānei o te mana whakahaere mimi, waea atu ki tō tākuta tonu atu.