He aha te mate Lennox-Gastaut (LGS)? Me kōrero tātou mōna!

He maha ngā mate hopuhopu o tāu tamaiti? He nui ngā huringa o tana ako me ana whanonga? Mena koinā, he mea nui pea ki a koe taku e kōrero nei. I tēnei rā ka kōrero tātou mō te Mate Lennox-Gastaut , arā, (LGS) hei whakarapopototanga, he mate haurangi kino, he uaua hoki ki te rongoā. Ka tīmata pea tēnei i te tamarikitanga. Engari kaua e manukanuka, kei te wātea mai ngā rongoā me ngā maimoatanga hou.

He aha rawa te mate Lennox-Gastaut (LGS)? Ko wai ka pāngia e tēnei mate?

He whakarāpopototanga noa iho, he momo mate haurangi kino te LGS e tīmata ana i te tamarikitanga, i mua i te 10 tau te pakeke, ā, i waenganui i te 3 me te 5 tau te pakeke . He paku noa ake te kitea i roto i ngā tama. Heoi, ehara i te mea tino noa. E pāngia ana e te kotahi ki te rua tāngata i roto i te miriona. Tata ki te 1% ki te 2% o ngā tūroro haurangi katoa he LGS.

He aha te pānga o tēnei ki ō tātou tinana?

Ko te mate haurangi he mate e tukuna ana ngā tohu hiko o te roro, arā, ngā mōhiohio, i waenga i ngā pūtau. Ko te (LGS) he momo mate haurangi kino ake . He maha ngā take:

• I roto i te LGS, neke atu i te kotahi te momo hopuhopu ka puta. Ka taea e ētahi o ēnei momo hopuhopu te whara kino ki te tamaiti.
• Ka taea e ēnei mate hopuhopu te kino ki te roro tonu. Ka taea e ngā tamariki whai LGS te pāngia e te kino nui o te roro, ngā uauatanga ako, me ngā whakaroa whanaketanga. Ko te tikanga o tēnei ka ngaro, ka wareware rānei te tamaiti i ngā mea kua akohia e rātou, pērā i te hikoi me te kōrero. He āhuatanga tino pouri tēnei.
• (LGS) he tino ātete ki te rongoā. Ko te tikanga he uaua ki te whakahaere mā te rongoā. Ko te rongoā te maimoatanga tuatahi, engari he maha ngā momo rongoā ka hoatu i te wā kotahi. Ahakoa ka hoatu, he onge te rongoā anake ki te whakamutu katoa i ngā haurangi.

He aha ngā tohu o (LGS)?

Ka kitea pea ngā momo tohu o te tamaiti whai LGS. Ko ētahi o ēnei ka kitea i roto i te oranga me ngā mahi o ia rā, ko ētahi ka kitea noa i te wā e haurangi ana.

Ngā raruraru ako me ngā whanonga

He mea noa mō ngā tamariki whai LGS te pāngia e ngā uauatanga ako me ngā raruraru whanonga . Ka puta wawe ēnei i muri i te tīmatanga o ngā mate hopuhopu, ā, ka kino haere i te haere tonu o ngā mate hopuhopu. He maha ngā wā ka pumau ēnei raruraru ako me te hinengaro, arā, ka mau tonu tae noa ki te pakeketanga.

He uaua ki ngā tamariki whai LGS te ako, te kimi hoa, me te kōrero ki ētahi atu. Tērā pea ka uaua anō hoki ki a rātou te whakahaere i ō rātou kare ā-roto. Tērā pea ka whakaatu ētahi tamariki i ngā tohu e rite ana ki ngā tohu o ngā tamariki whai Autism Spectrum Disorder .

Wāhanga hopuhopu

I te nuinga o te wā ka puta te hopukanga i roto i ngā wāhanga e toru:

1. Prodrome, aura rānei: He mea tēnei ka pā ki ētahi tāngata i mua i te mate hopuhopu, ahakoa kāore i te katoa. He ahua kino pea tēnei. Tērā pea ka puta he panoni ki te tirohanga, he panoni ki ētahi atu tikanga, he panoni rānei ki te wairua, ki te whanonga rānei i tēnei wā.

2. Te hopuhopu: Koinei te wā ka puta he hopuhopu. Ka rerekē pea tēnei i runga i te momo hopuhopu (ka matapakihia e tātou ngā momo hopuhopu rerekē i raro nei).

3. Te whakaoranga i muri i te hopukanga: Koinei te wā i muri i te mutunga o te hopukanga. Koinei te wā ka hoki anō te tangata ki te māramatanga katoa.

Ngā momo hopuhopu i kitea i roto i te LGS

He maha ngā momo hopuhopu matua e kitea ana i roto i te LGS. Ko ngā momo hopuhopu tino noa me ō rātou pānga koia ēnei:

• Ngā hopukanga atonic:
• Te ngaronga o te mana whakahaere uaua/te hemo: Ka kiia hoki tēnei he "whakaekenga taka" nā te mea ka ngaro ohorere te mana whakahaere, ka hinga ki te whenua, pērā i te pēpi kua motu ngā aho. He tino morearea tēnei nā te mea kāore he mana whakahaere o te tamaiti ina hinga, ā, ka pāngia pea e ngā whara kino, tae atu ki te mate, ki te upoko, ki te uma, me te tuara.
• Te ngaronga hapa o te māramatanga: Kāore pea tēnei hopunga e tino ngaro te māramatanga.
• Roanga poto: He poto noa iho te roa o ēnei mate hopuhopu, pērā i te torutoru hēkona.

• Ngā wiri tonika:
• Te pakari/te hukapapa o te tinana katoa: Koinei te wā ka mimiti ohorere ngā uaua katoa o te tinana, ka pakari rawa te tinana me te mea kua hurihia hei kōhatu.
• He tū motuhake: Ina tū ana i runga i te whenua, kei runga i te whenua ō rātou waewae me ō rātou pakihiwi, ka taea te piko o ō rātou tuara. Ka taea te totoro o ngā ringa ki runga ake i ō rātou māhunga, ka taea rānei te pupuri i ngā ringa me te tohu o ngā tuke ki ngā taha, ā, ka taea te tata o ngā ringa ki ngā hope.
• Ka puta pinepine i te wā moe: Ka puta pinepine ēnei i te wā moe. Engari ka taea hoki te puta i te awatea. Mena ka puta tēnei i te wā e ara ana te tamaiti, tera pea ka whara ia nā te mea ka hinga pea te tamaiti.
• Roanga poto: Ka roa hoki tēnei mai i ētahi hēkona ruarua ki te meneti pea.

• Ngā mate hopuhopu koretake:
• Ngā kanohi e tuwhera ana, e titiro kau ana: I roto i tēnei mate hopuhopu, ka ngaro te māramatanga, engari ka noho tuwhera tonu ngā kanohi. Nō reira, he maha ngā wā ka pohehetia tēnei he moemoeā, he kore arotahi, me te āhua kei te hē te wāhi.
• Ngā nekehanga auau: I tēnei wā o te hopuhopu, ka kite pea koe i ngā nekehanga o ngā kanohi me te waha. Tērā pea ka kitea anō hoki ngā nekehanga o ngā ringa.
• He poto te roa: Kāore hoki tēnei e neke atu i te torutoru hēkona.

He mea nui: Tērā pea ka pāngia ngā tamariki whai LGS e ngā mate hopuhopu i roto i ngā "rōpū," arā, he maha ngā mate hopuhopu ka puta i roto i te wā poto. Neke atu i te rua hautoru o ngā tamarikiKa puta he āhuatanga e kiia nei ko te "Status Epilepticus" . He āhuatanga tēnei e hiahia ana kia rongoatia wawetia!

He aha te Tūnga Epilepticus?

Ko te tikanga o tēnei ko tētahi o ngā mea e rua:

• He haurangi kotahi, roa hoki, e roa ana i waenga i te 5 me te 30 meneti.
• Neke atu i te kotahi ngā hopukanga i roto i te 30 meneti, ā, kāore te tangata e hoki anō ki te māramatanga katoa i aua hopukanga.

He āhuatanga ohorere hauora te status epilepticus. He tino morearea tēnei nā te mea ka taea e ia te whara tonu i te roro, tae atu ki te mate.

Ētahi atu tohu me ngā momo hopu e pā ana

• Ngā mate hopuhopu tōniki-klonik: Ka tīmata ngā mate hopuhopu tōniki-klonik (i mua ko te "grand mal") i te ara kotahi ki ngā mate hopuhopu tōniki, engari he wāhanga anō kei a rātou. Ko te wāhanga kloniki te wā e oho ai te tinana, te āhuatanga tino kitea o te mate hopuhopu. Ko ngā mate hopuhopu tōniki me ngā mate hopuhopu tōniki-klonik e rua meneti te roa.
• Ngā nekehanga tere, poto, me te wiriwiri: Ko ngā mate urutā myoclonic he nekehanga ohorere, wiriwiri. He torutoru hēkona noa iho te roa, engari i ētahi wā ka roa ake. Ko te hunga kāore he mate urutā ka pāngia e ēnei momo "myoglonic jerks". Hei tauira, ka taea e rātou te whakararuraru, te oho ohorere rānei i te moe.
• Ngā tohu ā-pārongo, ā-hinengaro, ā-ētahi atu rānei: Ka pāngia tētahi wāhanga iti o te tinana e ngā mate hopuhopu wāhanga, arotahi rānei.

He aha ngā take o te LGS?

He maha ngā take pea o te mate Lennox-Gastaut. Ko ētahi o ngā take kei mua i te whānautanga o te tamaiti. Ko ētahi i puta mai i ngā kaupapa e puta ana i te wā tamarikitanga. I roto i te hauwhā o ngā take o te "(LGS)", kāore e taea te tautuhi i te take mārama.

Anei ētahi o ngā take kua tautuhia:

• Ngā raruraru ki te whanaketanga o te roro i mua i te whānautanga.
• Ngā whara nui o te upoko (ngā whara roro, ngā whara roro rānei).
• Ngā mate urutā e kino ai te roro, pērā i te meningitis, te encephalitis rānei.
• Ngā mate tuku iho o te pūnaha io, hei tauira `(Ngā mate Mitochondrial)`.
• Te kino o te roro i puta mai i te korenga o te hāora i mua atu, i te wā rānei e whānau ana (cerebral hypoxia).
• Te mate pukupuku ngongo.
• Ngā pukupuku roro.
• Te mate o te Hauāuru (he momo mate haurangi tēnei, ā, ka taea e ia te whanake hei LGS i muri mai).

Kua kitea e ngā kairangahau he mea noa ngā "ira whakarerekētanga de novo" i waenga i te hunga whai LGS.Ko te tikanga o te kupu de novo ko "mai i te tīmatanga." Ko ēnei he hapa kei roto i te `(DNA)` o te tangata e puta ohorere ana, e puta noa ana. Arā, ko te whakarerekētanga ira i puta mai i te hapa kei roto i te `(DNA)` o te parāoa, o te hua manu rānei i puta ai te tangata, engari ehara i te hapa kei roto i te `(DNA)` o tētahi o ngā mātua.

Heoi anō, tera pea he pānga ira ki te mate. Tata ki te 30% o te hunga whai LGS he hītori whānau mō te mate haurangi. Heoi anō, me nui ake ngā rangahau hei whakatau i te nui o tēnei āhuatanga ira.

He mate hopuhopu tēnei?

Kāo, ehara te mate Lennox-Gastaut i te mate hopuhopu. Kāore e horapa mai i tētahi tangata ki tētahi atu. Heoi, ka taea e ētahi mate hopuhopu te whakararu i te roro, ā, ka puta te "LGS". Heoi, ehara i te mea ko te hunga katoa e pāngia ana e aua mate ka pāngia e te "LGS".

Me pēhea te tātaritanga o te mate Lennox-Gastaut (LGS)?

He maha ngā whakamātautau e mahia ana hei tautuhi i te LGS, ā, ka whakahaerehia e te tākuta he whakamātautau io. Tērā pea ka whakapae te tākuta tamariki i te mate i runga i ngā kōrero a ngā mātua mō ngā tohu o tā rātou tamaiti, inā koa mēnā he ngoikoretanga ako, he raruraru whanonga rānei tō te tamaiti.

He aha ngā whakamātautau e mahia ana hei tautuhi i tēnei?

Ko ngā whakamātautau e whakamahia whānuitia ana ko:

• Electroencephalogram (EEG): Ko te whakatakoto i ētahi irahiko ki runga i te tumuaki me te tiēre kawe hiko hei ine i te ngohe hiko o te roro. He mea nui te EEG hei tātaritanga i te LGS nā te mea e whakaatu ana i tētahi tauira hiko motuhake i roto i ngā ngaru roro.
• Whakaahua Āhua Aukume (MRI): Ka whakamahia he aukume kaha me te rorohiko hei tango pikitia kounga teitei o roto o te tinana, inā koa te roro. He tino āwhina tēnei ki te kite i ngā raruraru o te whanaketanga o te roro.
• Whakamātautau taiwhanga: Ka tirohia e ēnei whakamātautau te toto me te mimi kia kitea ai mēnā he take kē atu pea o ngā mate hopuhopu. Ka tirohia ngā mea pēnei i te matū toto, ngā whākōkī ate, me te mahi a te whatukuhu. Ahakoa kāore e taea e ēnei whakamātautau te tautuhi i te LGS, ka taea e rātou te āwhina ki te whakakore i ētahi atu āhuatanga ka rite ki te LGS.
• Whakamātautau ira: Ka āwhina tēnei ki te whakatau mēnā he āhuatanga tuku iho ka puta ai te LGS, mēnā rānei he whakarerekētanga ira tūpono.

Hei tāpiritanga, ka taea pea te whakahaere i ētahi atu whakamātautau hei whakakore i ngā āhuatanga ōrite. Mā tō tākuta koe e kōrero atu mō tēnei.

Me pēhea te rongoā i tēnei? Ka taea te whakaora?

He maha ngā huarahi maimoatanga mō te LGS. Heoi, he tino uaua te rongoā i tēnei mate. I te nuinga o te wā, ka taea te whakamahi i tētahi, i tētahi huinga rānei o ēnei maimoatanga:

• Ngā rongoā
• Ngā rongoā kai
• Pokanga roro, taputapu rānei kua whakatōkia

Ngā rongoā

He tino ātete te mate Lennox-Gastaut ki te rongoā. Koia te take he tino uaua ki te whakahaere. I roto i te nuinga o ngā wā, he maha ngā rongoā e hiahiatia ana. Ko tētahi atu āhuatanga uaua ko ētahi rongoā ārai-ohorere, e whakahaere ana i ētahi momo hopukanga, ka taea te whakanui ake i te auau o ētahi atu momo hopukanga.

Ina ātete te mate ki te rongoā, ka ngana pea ngā tākuta ki te aukati i ētahi momo mate hopuhopu, ki te whakaiti rānei i tōna auau. Hei tauira, he mea tino nui te ārai i ngā mate hopuhopu atonic, nā te mea he nui te tūponotanga o te whara mai i te hinganga.

Ngā rongoā kai

Mō te tini o te hunga e pāngia ana e te mate haurangi kino, ka taea e ngā whakarerekētanga kai te āwhina ki te whakaiti i te auau o ngā mate haurangi, te whakamutu rānei i aua mate. Ko te kai ketogenic mō te mate haurangi – he kai nui te pūmua me te ngako, ā, he iti te warowaihā – e taunakihia ana e ngā tākuta. He kōwhiringa pai pea tēnei ina kore e whai hua te rongoā.

Ahakoa he rongoā rongonui te kai ketogenic mō te mate haurangi kino, he iti noa iho ōna ngoikoretanga. Ka whai hua noa tēnei kai mēnā ka tino whai koe i tēnei kai. Nā te mea ka taea e te kai nui rawa o ngā warowaihā, pērā i te huka me ngā kai māngaro, te whakaoho i ngā mate hopuhopu. Heoi anō, ka taea hoki e ētahi atu kai kua whakarerekētia te āwhina. Ki te hiahia koe, ka taea e tō tākuta te āwhina i a koe ki te whakamātau i tētahi o ēnei kai.

Te pokanga roro me ngā taputapu kua whakatōkia

I ētahi wā, ina koa kāore i angitu ētahi atu maimoatanga, ko te pokanga te kōwhiringa pai rawa atu. Anei ētahi momo pokanga:

• Te Whakaoho i te Nerve Vagus (VNS): Ko te whakaurunga o tētahi taputapu ki roto i te tinana e tuku ana i tētahi iahiko hiko ngawari ki te io cranial 10, te io vagus – e hono tika ana ki te roro. Ka taea e tēnei iahiko te whakaiti i te auau me te kaha o ngā hopukanga. I roto i te wā, ka piki ake ōna pānga. Ko te tikanga he iti ake ngā hopukanga me ngā hopukanga iti ake te kino. He tikanga whakahurihuri te whakaurunga o tēnei taputapu, he iti ngā mōrearea me te wā whakaora poto, nō reira he maha ngā wā ka whakaarohia i mua i te pokanga nui.
• Corpus callosotomy: Ko te corpus callosum he wāhanga o te roro e mahi ana hei piriti i waenga i te taha maui me te taha matau o te roro. Ina motuhia te corpus callosum, ka mutu te haere whakamua me te haere whakamua o ngā tohu rerekē e puta ai ngā mate hopuhopu. Ka taea e tēnei te whakaiti i te auau o ngā mate hopuhopu, te aukati rānei i ngā mate hopuhopu kino, e whakakorekore rawa ai.
• Te tango i te hemispherectomy `(Te tango i te hemispherectomy)`:Ko te tikanga o tēnei ko te tango i tētahi taha o te roro mā te pokanga. Ahakoa he āhua tino kino tēnei, ka taea e ngā tohunga te whakamahi hei whakamutu i ngā mate hopuhopu kāore e taea te whakahaere. Ā muri ake nei, ka taea e te rongoā tinana te āwhina i te roro ki te urutau ki te huringa. Ka hurihia e te roro ia ia anō, ā, ka tangohia e te wāhanga e toe ana ngā mahi a te wāhanga kua tangohia.
• Tangohanga: Ka taea e ngā hanganga rerekē o te roro te whakaputa i te LGS i ētahi wā. Mena ka kitea e ngā tākuta tētahi āhuatanga rerekē, ka taea pea e rātou te tango i te kiko roro kua pakaru, kua mate rānei, ka mutu ai ngā hopuhopu. Heoi, nā te mea i roto i te LGS, kei roto i ngā wāhi maha o te roro te mahi hopuhopu, ehara tēnei i te kōwhiringa tino angitu mō te LGS.

Ngā raruraru/ngā pānga taha o te maimoatanga

He mea motuhake ngā raruraru o te maimoatanga mō ia maimoatanga. Nō reira, he mea pai kia kōrero ki tō tākuta mō ngā raruraru me ngā pānga taha o te maimoatanga e whiwhi ana koe, tō tamaiti rānei. Kātahi ka taea e te tākuta te hoatu ki a koe ngā kōrero e tika ana mō tō āhua, ō āhuatanga, me ētahi atu āhuatanga hauora.

Kia pēhea te roa ka pai ake ai taku āhua i muri i te maimoatanga? Kia pēhea te roa ka ora ai ahau?

Ka rerekē te roa o te wā whakaora i muri i te maimoatanga i runga i ngā tikanga maimoatanga e whakamahia ana me tō āhua whānui. Ko tō tākuta te tangata pai rawa atu hei tohutohu i a koe he aha ngā mea hei tumanakohia me te roa o te wā e ora ai.

Ka taea te ārai i te mate Lennox-Gastaut (LGS)?

I te nuinga o te wā, ehara te LGS i te mate e taea te ārai. Kāore hoki e taea te whakaiti i te mōrearea o te whanaketanga. Ko te mea anake hei ārai ko ngā whara o te mahunga me te roro ka puta mai i te LGS. Ko te huarahi anake hei ārai i tēnei mate ko te mau i ngā potae kua whakaaetia, kua whakamanahia hoki e āu tamariki.

He aha taku e tumanako atu ai mēnā kei a au, kei taku tamaiti rānei tēnei āhuatanga?

Ko te mate Lennox-Gastaut he mate e pā kino ana ki ngā hua. He maha ngā tamariki e pāngia ana e tēnei mate ka pāngia e ngā ngoikoretanga ako me te kino o te roro tuturu e whakawhāiti ana i ō rātou pūkenga hinengaro. Waihoki, nā te mea he mea noa ngā whakaekenga atonic (ngā whakaekenga taka), ā, he maha ngā wā ka hinga, ka nui ake te mōrearea o ngā tamariki e pāngia ana e tēnei mate ki te whara.

He uaua hoki te rongoā i tēnei mate. He maha ngā tamariki e pāngia ana e tēnei mate e hiahia ana ki te tiaki motuhake mō te wā katoa nā te mea kāore e taea e rātou te tiaki i a rātou anō. Heoi, ko ētahi tāngata e pāngia ana e tēnei mate he iti noa te whara o te roro, arā, ka taea e rātou te noho motuhake.

Kia pēhea te roa o te (LGS)?

Ki te kore e tukuna he maimoatanga hei whakamutu katoa i ngā haurangi (he mea tino onge), ka mau tonu te mate LGS mō te wa katoa.

He aha te tirohanga mō tēnei āhuatanga?

Ko ngā mōrearea nui rawa atu o te mate Lennox-Gastaut ko te pakaru o te roro i ngā hopukanga kore whakahaere, i ngā hinganga rānei i puta mai i ngā hopukanga. Nā ēnei mōrearea, ko te reiti mate mō te hunga whai "LGS" i roto i ngā tau 10 o te tātaritanga kei waenga i te 3% me te 7%.

I ētahi wā, ka taea e ngā tikanga hauora te aukati i ngā mate hopuhopu i puta mai i te LGS. Ka mutu te mate, engari kāore e taea te whakatika i ngā kino o te roro mai i ngā mate hopuhopu o mua.

Me pēhea taku tiaki i ahau anō? / Me pēhea taku tiaki i taku tamaiti?

Mena kei a koe, kei tētahi rānei o tō whānau te LGS, he mea nui kia whai koe i ngā tohutohu a tō tākuta. Kei roto i tēnei:

• Te tango i te rongoā kia rite ki te whakahaunga.
• Ka haere ki te tākuta e ai ki te tohutohu.
• Te aroturuki i ngā mate hopuhopu me te karo i ngā mea whakaoho, i ngā āhuatanga rānei ka hua ake ai ngā mate hopuhopu.

Āhea ahau me kite i te tākuta?

Mā tō tākuta, mā tō tākuta rānei, tā tō tamaiti, koe e kī atu kia haere mai mō ngā tirotiro whai muri i ngā wā e tika ana. Me toro atu hoki koe ki tō tākuta mēnā ka nui te rerekētanga o ō tohumate mate haurangi, mēnā rānei ka pā ki tō mahinga me ō mahi o ia rā.

Āhea ahau me haere ki te Wāhanga Maimoatanga Ohotata (ETU) ?

Mena kei te pāngia koe, tāu tamaiti rānei e te mate haurangi, e ngā mate haurangi maha rānei e tutuki ana i ngā paearu mō te āhuatanga ohorere hauora e kiia nei ko te status epilepticus , me haere koe ki te rūma ohorere i te hōhipera tata ki a koe. Ko te tikanga tēnei i roto i ngā āhuatanga e whai ake nei:

• Mena ka roa te hopukanga kotahi i waenga i te 5 me te 30 meneti.
• Mena ka puta ngā mate urutā e rua, neke atu rānei, i roto i te 30 meneti, ā, kāore te tangata e hoki anō ki te māramatanga katoa i te wā e mate urutā ana.

Karere Tangohia ki te Kāinga

Ko te mate Lennox-Gastaut (LGS) he momo mate haurangi kino, ka tīmata wawe. He maha ngā wā ka pā kino ki te oranga o te tamaiti, ā, i ētahi wā ka pā mō te wā roa. Ahakoa he uaua ki te rongoā, ka taea e ngā rongoā hou, ngā pokanga, me ngā maimoatanga te āwhina i te whakaiti i te kaha o te mate me te whakawhāiti i te horapa o te mate. He onge te rongoā ka taea te whakaora katoa i te mate. Heoi, me nui ake ngā rangahau hei whakatau mēnā ka taea te rongoā, te whakaora rānei i tēnei mate. Mena kei tō tamaiti tētahi o ēnei tohu, he pai ake te toro atu ki te tākuta i te wā e taea ai.

` Te mate Lennox-Gastaut, LGS, mate haurangi, mate hopuhopu, tamariki, mate roro, mate pūnaha io