Loaʻa i kāu keiki kahi puʻupuʻu lolo e like me kēia? E makaʻala kākou i (Ganglioglioma)!

Ke loaʻa koke nei i kāu keiki liʻiliʻi nā ʻōʻili? A i ʻole ke hoʻopiʻi mau nei ʻo ia e ʻeha ana kona poʻo ke ala ʻo ia i ke kakahiaka? He mea maʻamau iā ʻoe ma ke ʻano he makua ke makaʻu nui i ka ʻike ʻana i nā mea e like me kēia. I kekahi manawa hiki i kēia ke lilo i mau hōʻailona o kahi puʻupuʻu liʻiliʻi i loko o ka lolo. ʻO ia ke kumu i manaʻo ai mākou i kēia lā e kamaʻilio e pili ana i kēia ʻano puʻupuʻu lolo kakaʻikahi i kapa ʻia ʻo Ganglioglioma . Mai hopohopo, e kamaʻilio mākou e pili ana i kēia me nā kikoʻī a me ka maʻalahi.

He aha kēia Ganglioglioma?

I ka ʻōlelo maʻalahi, he ʻano ʻōʻō lolo kakaʻikahi loa ʻo Ganglioglioma. Hana ʻia ia me ka hui pū ʻana o ʻelua ʻano o nā pūnaewele: nā pūnaewele neuronal a me nā pūnaewele glial .

E noʻonoʻo e pili ana i ia mea, ua like ko kākou lolo me kahi mīkini paʻakikī loa.

• Ua like nā pūnaewele neuronal me nā uea e lawe ana i ka ʻike i mua a i hope i loko o kēia mīkini. Na kēia mau pūnaewele ke kuleana no ka lawe ʻana i ka ʻike ma o ko kākou kino holoʻokoʻa.
• Ua like nā pūnaewele glial me nā limahana kākoʻo e kōkua ana e mālama i kēlā mau kaula i kahi. Hoʻokumu lākou i ke ʻano o kā mākou ʻōnaehana nerve waena , a hana pū lākou me nā neurons e kōkua iā lākou e hana.

Ua kapa ʻia hoʻi nā gangliogliomas he mau ʻōpū neuronal-glial i hui pū ʻia no ka mea ua hana ʻia lākou mai ka hui pū ʻana o nā ʻano cell ʻelua. ʻIke pinepine ʻia lākou i nā keiki a me nā ʻōpio .

ʻO ka nūhou maikaʻi, ʻo ka hapa nui o ka manawa, he liʻiliʻi kēia mau gangliogliomas, ulu lohi, a ʻaʻole maʻi kanesa (benign) . ʻO ke ʻano kēia, ʻaʻole lākou e laha i nā ʻāpana ʻē aʻe o ke kino. Eia nō naʻe, inā ʻaʻole lākou he maʻi kanesa, hiki iā lākou ke hana i nā pilikia no ka mea aia lākou i loko o ka lolo, no laila pono ka lāʻau.

Ua hoʻokaʻawale ʻia ka hapa nui o nā gangliogliomas he mau glioma haʻahaʻa . ʻO nā Gliomas nā puʻupuʻu e ulu ana i loko o ka lolo a i ʻole ke kaula kuamoʻo ma muli o ka ulu ʻole o nā pūnaewele glial. No ka mea he haʻahaʻa ko lākou ʻano, ʻaʻole lākou he maʻi kanesa a he haʻahaʻa ka pilikia o ka hoʻi hou ʻana.

Eia nō naʻe, he mea kākaʻikahi loa, hiki i kēia mau Ganglioglioma ke kiʻekiʻe . I kēlā hihia, hiki iā lākou ke lilo i mea ʻino . ʻOi aku ko lākou huhū, pālahalaha koke, a ʻoi aku ka nui o ka manawa e hoʻi hou ma hope o ka mālama ʻana.

Aia kekahi mau ʻano ganglioglioma like ʻole? Ma hea lākou e hana ʻia ai?

ʻO ka hapa nui o nā gangliogliomas e loaʻa ma nā ʻāpana o kou lolo kokoke i kou mau pepeiao, i kapa ʻia ʻo nā lobes temporal . Eia naʻe, hiki iā lākou ke ulu ma nā wahi āpau o ka lolo. Eia kekahi laʻana:

• Cerebrum - ʻO ka ʻāpana nui loa o ko kākou lolo.
• ʻŌpū lolo - ʻO kahi e pili ai ka lolo a me ke kaula kuamoʻo.
• ʻO Cerebellum - ka ʻāpana e hoʻomalu i ke kaulike.
• ʻO Talamus
• Hypothalamus

ʻAʻole wale kēia, i kekahi manawa hiki i kēia mau puʻupuʻu ke hana ʻia i loko o ke kaula spinal .

Aia kekahi ʻano kakaikahi loa, i kapa ʻia ʻo Desmoplastic Infantile Ganglioglioma . Hoʻomohala pinepine kēia ma ka ʻaoʻao o luna o ka lolo i nā keiki ʻōpio ma lalo o 2 mau makahiki .

Pehea ka maʻamau o kēia maʻi?

He maʻi laha ʻole ka Ganglioglioma. No ka laʻana, ma ʻAmelika Hui Pū ʻIa, ma kahi o 4,000 mau keiki ma lalo o 19 mau makahiki i ʻike ʻia he puʻupuʻu lolo a i ʻole ke kaula kuamoʻo i kēlā me kēia makahiki. Eia nō naʻe, ma kahi o 1% a 2% wale nō o kēlā mau keiki i loaʻa i nā gangliogliomas. No laila, ʻaʻole kēia he mea maʻamau ʻole.

He aha nā hōʻailona o kēia?

E like me kaʻu i ʻōlelo ai ma mua, ʻoiai ʻo ka hapa nui o kēia mau puʻupuʻu e ulu ana ma nā lobes temporal, aia kahi manawa kiʻekiʻe o ka maʻi epilepsy . No laila, ʻo nā hopu ʻana paha ka hōʻailona mua āu e ʻike ai i kāu keiki.

ʻO ka maʻamau, ulu mālie nā hōʻailona ʻē aʻe. Hiki ke ʻokoʻa kēia mau hōʻailona ma muli o kahi o ka puʻupuʻu i loko o ka lolo:

• ʻO nā poʻo ʻeha , ʻoiai i ke ala ʻana i ke kakahiaka.
• Ka luaʻi a me ka luaʻi .
• Paʻakikī ke ale ʻana .
• ʻIke pālua .
• Ka hele wāwae paʻa ʻole .
• Manaʻo luhi (Fatigue) .
• Pōʻaiʻī .
• Ka nāwaliwali ma kekahi ʻaoʻao o kou kino .

Inā loaʻa i kāu keiki kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​ʻoi aku ka maikaʻi o ka ʻike koke ʻana i ke kauka a hoʻāʻo ʻia.

No ke aha e ulu ai kēia Ganglioglioma?

I ka hapanui o nā hihia, he paʻakikī ke loaʻa i kahi kumu kikoʻī no ka ulu ʻana o kēia mau Gangliogliomas. ʻO ke ʻano kēia, ulu lākou me ka aneane ʻole.

Eia nō naʻe, ua ʻike nā kānaka noiʻi ua loaʻa kahi hoʻololi genetic i loko o ka gene BRAF ma waena o 10% a me 60% o kēia mau gangliogliomas. Eia nō naʻe, hiki ke loaʻa kēia hoʻololi genetic i nā ʻano ʻōpū ʻē aʻe, no laila ʻaʻole hiki ke ʻōlelo maopopo he kumu kūikawā kēia no nā gangliogliomas.

He aha nā kumu pilikia no kēia maʻi?

ʻOi aku ka nui o ka pilikia o nā keiki me kekahi mau kūlana genetic i ka loaʻa ʻana o nā ʻōpū glial, me ka ganglioglioma. ʻO kekahi o kēia mau kūlana:

• ʻAno Neurofibromatosis 1 (NF1)
• ʻO ka sclerosis tuberous
• ʻO ka maʻi Turcot
• ʻO ka maʻi Li-Fraumeni
• ʻO ka maʻi Von Hippel-Lindau

Eia kekahi, hōʻike ka ʻikepili he ʻoi aku ka nui o ka loaʻa ʻana o nā puʻupuʻu lolo a me nā iwi kuamoʻo i nā keikikāne ma mua o nā kaikamahine, a ʻoi aku ka pinepine o ka loaʻa ʻana o kēia mau puʻupuʻu i nā keiki keʻokeʻo ma mua o nā keiki o nā lāhui ʻē aʻe.

Pehea ʻoe e ʻike pono ai i kēia?

Inā loaʻa i kāu keiki kēia mau hōʻailona, ​​e hana mua ke kauka i kahi hoʻokolokolo kino piha. A laila e nīnau lākou iā ʻoe e pili ana i nā hōʻailona o kāu keiki a me ka mōʻaukala olakino.

A laila, hana ʻia kahi hoʻokolohua neurological . Hoʻāʻo kēia i nā reflexes o ke keiki, ka ikaika o nā ʻiʻo, ka neʻe ʻana o ka waha a me nā maka, ka ʻike, a me ka hoʻonohonoho ʻana.

Ma hope o kēia mau hoʻokolohua mua, e paipai ke kauka i kekahi mau hoʻokolohua hou aʻe e hōʻoia i ka hōʻailona:

• CT scan (Computed tomography - CT scan) : Hoʻohana kēia i kahi moʻo o nā kukuna X a me kahi kamepiula e lawe i nā kiʻi ʻokiʻoki o ka lolo o ke keiki.
• MRI scan (Brain magnetic resonance imaging - MRI scan) : Hoʻohana kēia i kahi magnet ikaika, nā nalu lekiō, a me kahi kamepiula e hana i nā kiʻi kikoʻī loa o ka lolo. He mea nui loa kēia no ka hoʻoholo ʻana i kahi a me ka nui o ka puʻupuʻu.
• EEG (Electroencephalogram - EEG) : Ke ana kēia hoʻāʻo i nā hōʻailona uila a me ka hana o ka lolo o ke keiki. Hiki i kēia ke kōkua i ka hoʻoholo ʻana i ke kumu o ka hopu ʻana, ʻoiai inā he hopu ʻana.
• Biopsy : I kekahi manawa, ma muli o ke kūlana o ke keiki, hiki i kahi neurosurgeon ke hana i kahi biopsy. Pili kēia i ka wehe ʻana i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai ka puʻupuʻu, ma o ke ʻoki ʻana a i ʻole ma o kahi ʻoki liʻiliʻi, a nānā ʻia ma lalo o kahi microscope e kahi pathologist . Eia kekahi, hiki ke hoʻouna ʻia kēia hāpana ʻiʻo no nā hoʻokolohua kūikawā ʻē aʻe, e like me ka hoʻāʻo genomic . Hiki i kēia ke kōkua i ka ʻike ʻana i ke ʻano kikoʻī o ka puʻupuʻu.

Pehea e mālama ʻia ai ka Ganglioglioma?

I mea e loaʻa ai i kāu keiki ka lāʻau lapaʻau maikaʻi loa, ʻoi aku ka maikaʻi o ka kuhikuhi ʻana iā lākou i kahi kikowaena lapaʻau pediatric . Pono ʻoe e ʻike i kahi oncologist pediatric i hōʻoia ʻia e ka papa a i ʻole kahi neuro-oncologist pediatric i loaʻa ka ʻike i ka mālama ʻana i nā gangliogliomas.

ʻO ka lāʻau lapaʻau i hāʻawi ʻia i ke keiki e pili ana i kekahi mau kumu:

• Ke olakino holoʻokoʻa o ke keiki, ka makahiki, a me nā kūlana olakino ma mua.
• ʻO ke ʻano o ka puʻupuʻu, kona wahi i loko o ka lolo, a me kona nui.
• Ke koʻikoʻi o ka puʻupuʻu.
• Pehea ka maikaʻi o ke keiki e ʻae ai i kekahi mau lāʻau lapaʻau, ʻoki kino, a i ʻole nā ​​​​lāʻau lapaʻau.
• Pehea e holomua ai ka puʻupuʻu e like me ka mea i manaʻo ʻia e nā kauka.

ʻO ka laina mua o ka lāʻau lapaʻau , ʻo ia ke ʻoki ʻana e wehe i ka puʻupuʻu. E hoʻāʻo ke kauka e wehe i ka nui o ka puʻupuʻu e like me ka hiki. Eia nō naʻe, i kekahi manawa inā aia ka puʻupuʻu ma kahi ʻāpana koʻikoʻi loa o ka lolo, hiki ke paʻakikī ke wehe loa.

E noʻonoʻo, inā ʻaʻole hiki ke wehe loa ʻia ka puʻupuʻu, a inā he kiʻekiʻe loa ia, hiki i nā kauka ke hoʻohana i ka radiation therapy .

• Lapaʻau radiation : Hoʻohana kēia i nā kukuna X-energy kiʻekiʻe a i ʻole nā ​​ʻano radiation ʻē aʻe e pepehi i nā hunaola kanesa a i ʻole e hoʻōki iā lākou mai ka ulu ʻana a i ʻole ka māhele ʻana. Hiki i kēia lāʻau lapaʻau ke kuhikuhi i kahi kikoʻī o ka puʻupuʻu a hāʻawi i ka radiation. Hiki ke ʻōlelo ʻia kēia lāʻau lapaʻau inā e ulu mālie ana ka puʻupuʻu (holomua) a inā paha ua hoʻi mai ma hope o ke ʻoki ʻana (recurrent).
• Chemotherapy : ʻO kēia ka hāʻawi ʻana i nā lāʻau lapaʻau e pepehi a hoʻēmi paha i nā hunaola kanesa.
• Lapaʻau i kuhikuhi ʻia : He lāʻau lapaʻau kēia me nā lāʻau lapaʻau. Eia nō naʻe, hoʻohana kēia i nā lāʻau lapaʻau e kuhikuhi wale ana i kahi māka kikoʻī i loko o ka puʻupuʻu. He nui nā gangliogliomas i loaʻa nā māka kikoʻī, e like me ka hoʻololi ʻana o ka gene BRAF a mākou i kamaʻilio ai ma mua. Hiki i kēia mau lāʻau lapaʻau i kuhikuhi ʻia ke luku i kēlā mau māka.

I kekahi manawa, hiki i nā kauka ke ʻōlelo aku i nā keiki me nā puʻupuʻu e pane hou ana i nā lāʻau ʻē aʻe e kuhikuhi ʻia i nā hoʻokolohua lapaʻau , ʻo ia nā haʻawina e hoʻāʻo ai i nā lāʻau hou.

He aha ka wānana?

ʻO kēia ka mea a nā mākua he nui e makemake ai e ʻike. ʻO ka nui o ke ola ʻana o ʻelima mau makahiki no ke keiki me ka ganglioglioma ma luna o 90% . ʻO ke ʻano kēia he manawa kūpono loa ko ke keiki e ola ai i ʻelima mau makahiki ma hope o ka hōʻoia ʻana.

Eia nō naʻe, pili kēia manawa e ho'ōla ai i kekahi mau kumu, e like me ke ʻano o ka puʻupuʻu, ka makahiki o ke keiki, a me kahi o ka puʻupuʻu ma ka lolo.

Aia kekahi manawa e hoʻi hou ai? (Relapse)

ʻOi aku ma mua o 95% o nā gangliogliomas he haʻahaʻa ke ʻano , ʻo ia hoʻi, ʻaʻole paha e hoʻi hou ma hope o ka wehe loa ʻana o ka puʻupuʻu.

Eia nō naʻe, ʻoi aku ka nui o ka manawa e hana hou ai nā ʻōpū kiʻekiʻe, e like me ka Ganglioglioma papa 3, ma hope o ke ʻoki ʻana.

Hiki ke pale ʻia kēia mai ka hana ʻana?

ʻO ka mea pōʻino, ʻaʻole maopopo i nā kānaka noiʻi ke kumu e loaʻa ai i kekahi mau keiki nā Gangliogliomas a ʻo kekahi ʻaʻole. No laila, ʻaʻohe ala e pale aku ai i kēia maʻi mai ka ulu ʻana..

Āhea wau e lawe ai i kaʻu keiki i ke kauka ?

Inā loaʻa koke i kāu keiki kahi maʻi hopu, a inā paha e hōʻike ana lākou i kekahi a ʻoi aku paha o nā hōʻailona ʻē aʻe aʻu i ʻōlelo ai ma mua ma kēia ʻatikala (e like me ke poʻo ʻeha o ke kakahiaka, ka luaʻi, ka paʻakikī i ka hele wāwae), he mea nui e lawe koke i kāu keiki i ke kauka no ka hoʻokolokolo ʻana .

Hiki ke like nā hōʻailona o Ganglioglioma me nā maʻi ʻē aʻe, no laila he mea nui e ʻike i ke kauka no kahi hōʻoia kūpono e ʻike pono i ka mea e hana nei.

He aha nā nīnau āu e nīnau ai i ke kauka?

Ke ʻike ʻoe ua loaʻa i kāu keiki kahi ganglioglioma, he mea maʻamau ka loaʻa ʻana o nā nīnau he nui ma kou manaʻo. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i ke kauka:

• He aha ke ʻano o ka Ganglioglioma a kaʻu keiki?
• He maʻi kanesa anei?
• Pehea e pili ai kēia puʻupuʻu i ka lolo a me ke olakino o kaʻu keiki?
• He aha nā koho lapaʻau?
• Hiki iā ʻoe ke ʻōlelo aku i nā hui kākoʻo e kōkua i nā ʻohana o nā keiki me ka ganglioglioma?

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai ...

"He puʻupuʻu lolo ko kāu keiki." ʻO ka lohe ʻana i kēlā mau ʻōlelo e like paha me kahi manawa i paʻa i ka manawa. I hoʻokahi manawa hoʻohoka, hiki i kou ola ke manaʻo ua loli mau loa.

Akā, mai hoʻokuʻu i ka manaʻolana. ʻOiai ke ʻano hoʻohoka a weliweli paha kēia mau ʻōlelo, e hoʻomanaʻo he hapa nui o nā gangliogliomas he mau puʻupuʻu haʻahaʻa, ʻaʻole maʻi kanesa.

He mea maʻamau ka makaʻu ke haʻi ʻia aku i kāu keiki he puʻupuʻu ko lākou, a pono maoli ka lāʻau lapaʻau. Eia nō naʻe, ʻoi aku ka nui o ka manawa e hoʻopau koke ai kāu keiki i ka puʻupuʻu . E kamaʻilio me ke kauka o kāu keiki e pili ana i kona kūlana a me ka wānana. E hāʻawi lākou iā ʻoe i ka ʻike āpau āu e pono ai.

ʻO Ganglioglioma, nā puʻupuʻu lolo, pediatrics, nā hopu ʻana, ka maʻi epilepsy, ke ʻoki ʻana o ka lolo, ka maʻi kanesa