ʻOi aku ka nui o kekahi ʻaoʻao o ke kino o kāu pēpē ma mua o kekahi? (Hemihyperplasia) E aʻo kākou e pili ana i ia mea!

Ua ʻike anei ʻoe i kekahi ʻaoʻao o ke kino o kāu keiki liʻiliʻi, inā he lima a he wāwae paha, a i ʻole kekahi ʻaoʻao o ko lākou helehelena, me he mea lā ʻoi aku ka nui ma mua o kekahi? I kekahi manawa ua liʻiliʻi loa kēia ʻokoʻa a ʻaʻole paha e ʻike ʻia i ka wā mua. Akā i ka ulu ʻana o ke keiki, ʻoi aku ka maopopo o kēia ʻokoʻa. I kēia lā e kamaʻilio mākou e pili ana i ia ʻano kūlana.

He aha ka Hemihyperplasia? E ʻike kākou maʻalahi!

I ka ʻōlelo maʻalahi, ʻo ka hemihyperplasia ka wā e ulu nui ai kekahi ʻaoʻao o ko kākou kino ma mua o kekahi. I kekahi manawa ua kapa ʻia kēia he overgrowth syndrome , a i kekahi manawa hemihypertrophy . Hoʻopilikia pinepine ia i ka maka, nā lima, a i ʻole nā ​​​​wāwae. Akā i kekahi manawa hiki iā ia ke hoʻopilikia i nā ʻōpū o loko o ka ʻōpū. E noʻonoʻo iā ia he ʻoi aku ka lōʻihi o kekahi wāwae ma mua o kekahi, a i ʻole kekahi lima i ʻoi aku ka mānoanoa. I ka wā mua, he mea maʻalahi loa kēia ʻokoʻa, akā i ka wā e ulu ai ke keiki, e ʻike nui ʻia.

ʻO wai ka mea i loaʻa i kēia maʻi? Pehea ka maʻamau?

ʻO ka Hemihyperplasia kahi maʻi e kū mai ana i nā keiki . ʻO ia hoʻi, ʻaʻohe ʻokoʻa ma waena o nā kāne a me nā wahine. He maʻi hānau ʻia ia, ʻo ia hoʻi, ua hānau ʻia ke keiki me kēia maʻi. I kekahi manawa ʻike nā kauka iā ia i ka wā hānau. Akā i kekahi manawa ʻaʻole paha e ʻike ʻia a hiki i ka wā e ʻelemakule iki ai ke keiki, a hiki i ka ʻike maopopo ʻia ʻana o ka ʻokoʻa ma waena o nā ʻaoʻao ʻelua o ke kino.

He kūlana kākaʻikahi loa kēia. Ua hōʻike ʻia e ka noiʻi ʻana ʻo ka maʻi Beckwith-Wiedemann , ke ʻano maʻamau o ka hemihyperplasia, e kū mai ana ma kahi o hoʻokahi i loko o 11,000 mau hānau ʻana. No laila hiki iā ʻoe ke noʻonoʻo i ka laha ʻole o kēia.

Pehea ka hopena o ka hemihyperplasia i kahi keiki?

ʻO ke ala nui e hoʻopilikia ai kēia maʻi i kahi keiki, ʻo ia ke kumu o ka ʻokoʻa o ka nui o nā ʻāpana ʻelua o ke kino e like mau ana. No ka laʻana, ʻike ʻia kekahi ʻaoʻao o ka maka he ʻoi aku ka nui ma mua o kekahi, ʻo ia hoʻi, ʻike ʻia paha he ʻoi aku ka ulu.

ʻO ka mea nui loa, ʻo nā keiki me ka hemihyperplasia e piʻi aʻe ana ka pilikia o ka loaʻa ʻana o ka maʻi kanesa . ʻO kēia pilikia nui ka Wilms tumor, kahi ʻano maʻi kanesa puʻupaʻa, a me ka hepatoblastoma, kahi ʻano maʻi kanesa akepaʻa o nā keiki. ʻO ka piʻi ʻana o ka pilikia o kēia mau maʻi kanesa ma muli o ke ʻano o kēia kaulike ʻole o ka ulu ʻana o ke kino e pili ana i nā ʻōpū o loko o ke keiki.

Inā loaʻa i kāu keiki ka hemihyperplasia, pono paha lākou i nā hoʻokolohua maʻamau no ka liʻiliʻi he 7 mau makahiki . ʻO kēia mau hoʻokolohua maʻamau:

• Nā ultrasounds ʻōpū: Nānā kēia i nā ulu ʻana e like me nā tumors.
• Nā hoʻāʻo koko: Nānā kēia i kahi māka puʻupuʻu i kapa ʻia ʻo alpha-fetoprotein . Hiki i kēia ke hāʻawi i kahi hōʻailona inā loaʻa ka maʻi kanesa.

E makaʻu paha ʻoe ke lohe ʻoe e pili ana i kēia mau hoʻokolohua, akā ʻo ka ʻike ʻana i kēia mau mea ma mua a me ka hana pololei ʻana i nā hoʻokolohua ka mea nui loa no ke olakino o kāu keiki.

He aha nā hōʻailona o ka Hemihyperplasia?

ʻO ka hōʻailona nui a maopopo loa o kēia maʻi, ʻo ia ka ulu ʻana o kekahi ʻaoʻao o ke kino ma mua o kekahi . I kekahi manawa he ʻokoʻa loa kēia, akā e ʻike nui ʻia ana i ka hala ʻana o ka manawa.

ʻO nā hōʻailona ʻē aʻe (e pili pinepine ana me ka maʻi Beckwith-Wiedemann i ʻōlelo mua ʻia) e komo pū me:

• He ʻano ʻāwili ma nā pepeiao.
• Kekahi mau kīnā ma ka paia o ka ʻōpū.
• Ka hoʻonui ʻia ʻana o nā ʻōpū o loko (ate, pancreas, puʻupaʻa).
• Alelo nui.
• Haʻahaʻa ke kō koko (hypoglycemia) .

ʻOiai paha hoʻokahi a ʻelua paha o kēia mau hōʻailona e kū nei, ʻaʻole ia he manaʻo aia ke ʻano, akā inā loaʻa i kāu keiki kēia mau mea, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka.

He aha ka ʻokoʻa ma waena o ka Hemihyperplasia a me ka Hemiatrophy?

ʻO kēia mau kūlana ʻelua ke kumu o nā loli i ka nui o ke kino. Eia nō naʻe, ʻo ka hemiatrophy kahi kūlana kahi i ulu ʻole ai kekahi ʻaoʻao o ke kino. Hoʻopilikia pinepine ka hemiatrophy i hoʻokahi wahi o ke kino, e like me nā lima. Hiki i ka hemihyperplasia ke hoʻopilikia i nā wahi he nui o ke kino i ka manawa like.

He aha ke kumu o ka hemihyperplasia?

I kekahi mau hihia, hiki ke hoʻoulu ʻia ka hemihyperplasia e kahi maʻi genetic i kapa ʻia ʻo Beckwith-Wiedemann syndrome . I nā hihia ʻē aʻe, hiki ke kū mai ke ʻano me ka ʻole o nā maʻi genetic. I ia mau hihia, ʻaʻole maopopo i nā kauka ke kumu. Inā ʻaʻole pili ia i kahi ʻano chromosome abnormality, he ʻano sporadic paha ia, ʻo ia hoʻi, hiki mai ia ma ka ulia pōpilikia.

Pehea e ʻike ʻia ai ka hemihyperplasia?

ʻAʻohe hoʻāʻo kikoʻī e ʻike ai i ka hemihyperplasia. Inā ʻike ke kauka o kāu keiki i ka ulu like ʻole ma waena o ʻelua mau ʻāpana o ke kino, hiki iā ia ke hana i kahi loiloi kino a me ka hoʻāʻo genetic e ʻike inā loaʻa iā ʻoe ka maʻi Beckwith-Wiedemann . Hiki i kēia mau hoʻāʻo genetic ke kōkua i kāu kauka e hoʻoholo inā ua hoʻokumu ʻia ke kūlana e kahi kūlana genetic.

Eia kekahi, hiki i ke kauka o ke keiki ke hana i nā ultrasounds e nānā i kekahi mau mea ʻino a i ʻole nā ​​​​​​pūpū i loko o nā ʻōpū o loko.

Aia kekahi lāʻau lapaʻau piha no kēia? He aha nā lāʻau lapaʻau?

ʻAʻole, ʻaʻohe lāʻau lapaʻau no Hemihyperplasia. Akā, mai hopohopo. E hoʻomohala ke kime lapaʻau o kāu keiki i kahi hoʻolālā lapaʻau i hoʻopilikino ʻia i kā lākou mau pono a ma muli o kā lākou mau hōʻailona.

ʻO ka mālama ʻana no ka hemihyperplasia i loko o ke keiki e pili ana i ka nui o ka ʻokoʻa ma waena o nā ʻaoʻao ʻelua o ke kino. Hiki i ka hui lapaʻau o kāu keiki ke komo pū me nā loea e like me:

• Hepatologist: No nā pilikia e pili ana i ke akepaʻa.
• Orthopedist: No nā mea e like me ka lōʻihi o ka lālā.
• Nephrologist: No nā pilikia e pili ana i ka puʻupaʻa.
• Neurologist: E pili ana i ka ʻōnaehana nerve.
• Kauka Lapaʻau: E nānā i ke olakino holoʻokoʻa a me ka ulu ʻana o ke keiki.
• Kauka ʻokiʻoki: I kekahi manawa e hoʻoponopono i nā loli i ke ʻano.

Hana pū kēia mau loea a pau e hoʻomohala i kahi hoʻolālā lapaʻau no kāu keiki a nānā i nā ʻōpū i loko o ka ʻōpū o kāu keiki. ʻOiai ua pili ka hemihyperplasia me ka piʻi ʻana o ka maʻi kanesa, ke nānā mau nei nā kauka i nā maʻi e like me ka hepatoblastoma .

E pono anei ke keiki i ke ʻoki kino?

I kekahi manawa hiki i ke ʻoki kino ke hoʻoponopono i nā ʻokoʻa lōʻihi o nā lālā . Aia nā ʻano ʻoki kino like ʻole no kēia. Inā ʻōlelo kāu hui lapaʻau i ke ʻoki kino, e kamaʻilio me lākou e pili ana i ke ʻano o ke ʻoki kino maikaʻi loa no kāu keiki. Loaʻa paha i kāu keiki:

• He ʻoki kino e hoʻolōʻihi ai i kahi lima/wāwae pōkole.
• He ʻoki kino e kaohi iki ai i ka ulu ʻana o ka manamana wāwae/wāwae nui.

Aia kekahi mau pilikia a i ʻole nā ​​hopena ʻaoʻao o ka lāʻau lapaʻau?

Inā hana ʻia ke ʻoki ʻana o kāu keiki, e luhi paha lākou no kekahi mau pule i ko lākou hoʻōla ʻana. Hiki paha iā lākou ke ʻeha ma kahi i hana ʻia ai nā ʻoki. E nīnau i kāu kauka e pili ana i nā hopena ʻē aʻe o ke ʻoki kino kikoʻī o kāu keiki.

ʻEhia ka lōʻihi e hoʻōla ai ma hope o ke ʻoki kino?

ʻOkoʻa ka manawa hoʻōla ma muli o ke ʻano o ke ʻoki ʻana i loaʻa i kāu keiki. Hiki iā ʻoe ke ʻike i ka pehu ʻana, ka ʻeha, a me ka mae ʻana no kekahi mau lā a i ʻole nā ​​pule ma hope o ke ʻoki ʻana. Inā ʻaʻole ʻoe e ʻike i kekahi hoʻomaikaʻi ʻana i ka hala ʻana o ka manawa, e kamaʻilio me ke kauka o kāu keiki.

Hiki ke pale ʻia kēia kūlana?

ʻAʻole hiki ke pale ʻia ka hemihyperplasia, kahi kūlana e kū pinepine ʻia i ka wā hāpai. Eia nō naʻe, loaʻa paha i kāu pēpē ka maʻi Beckwith-Wiedemann.No laila, inā loaʻa iā ʻoe ka hemihyperplasia a ke manaʻolana nei ʻoe e loaʻa kahi keiki ʻē aʻe, e kamaʻilio me kāu kauka e pili ana i ka hoʻāʻo genetic . Hiki i kēia mau hoʻāʻo ke kōkua i ka hoʻoholo ʻana inā loaʻa pū kekahi mau ʻano chromosomal i kāu mau keiki ʻē aʻe.

Inā he moʻolelo ko ʻoe a i ʻole kāu hoa pili no nā maʻi hoʻoilina a ke noʻonoʻo nei ʻoe e loaʻa kahi keiki, he manaʻo maikaʻi e kamaʻilio me ke kauka. Hiki paha iā ʻoe ke noʻonoʻo i ke aʻoaʻo ma mua o ka hāpai ʻana .

He aha kaʻu e manaʻo ai inā loaʻa i kaʻu keiki ka hemihyperplasia?

Inā loaʻa iā ʻoe a i ʻole kāu keiki ka hemihyperplasia, hiki i ka nui like ʻole o nā ʻāpana kino ke hana i kekahi mau pilikia . No ka laʻana, hiki ke paʻakikī ke loaʻa nā lole kūpono. ʻO ka ʻokoʻa o ka lōʻihi o nā lālā ke hoʻopilikia i nā mea e like me ke kolo ʻana, ka hele wāwae ʻana, a me ka holo ʻana.

Eia kekahi, inā ʻike ʻia ka hemihyperplasia, ʻo ia hoʻi e pono ana kāu keiki i nā hoʻokolohua maʻamau no ka maʻi kanesa . E manaʻo e hana ʻia kēia mau hoʻokolohua i kēlā me kēia mau mahina a hiki i ka piha ʻana o kāu keiki i 7 mau makahiki.

He aha ka manaʻolana no ka hemihyperplasia?

He maʻi ola ka Hemihyperplasia. Eia nō naʻe, ua hōʻike ʻia nā haʻawina e hiki i ka ʻike mua ʻana a me ka nānā mau ʻana no ka maʻi kanesa ke hoʻomaikaʻi nui i ka nānā ʻana . ʻOiai inā loaʻa i kahi keiki me ka nānā mau ʻana i ka maʻi kanesa, ʻoi aku ka nui o ka hiki ke lilo i puʻupuʻu liʻiliʻi a me ke kahua mua o ka maʻi. ʻO ka hoʻomaka mua ʻana o ka lāʻau lapaʻau, ʻoi aku ka nui o ka holomua.

Hiki ke loaʻa kahi ola maʻamau me ka Hemihyperplasia?

ʻO ka hapa nui o nā keiki me ka hemihyperplasia e ola olakino a he ola maʻamau ko lākou . ʻOiai he mea nui e nānā ʻia no ka maʻi ʻaʻai i ka wā kamaliʻi, e emi mālie ana ka pilikia o kēia maʻi ʻaʻai i ka wā e hiki ai ke keiki i ka wā ʻōpio.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka?

Inā loaʻa i kāu keiki ka hemihyperplasia, nui paha kāu mau nīnau. ʻO ka ʻike ʻana i nā pane i kēia mau nīnau e kōkua iā ʻoe e ʻoluʻolu a hoʻomākaukau no ka wā e hiki mai ana. E nīnau i ke kauka a kahu maʻi paha o kāu keiki e like me:

• He ʻano hoʻoilina anei ka hemihyperplasia o kaʻu keiki a he mea hoʻomanaʻo wale nō paha?
• No ke aha ʻoe e paipai nei i kēia lāʻau lapaʻau a i ʻole ke ʻoki kino?
• He aha kaʻu e hana ai e ʻoluʻolu ai kaʻu pēpē ma mua a ma hope o ke ʻoki ʻana?
• ʻEhia ka lōʻihi e noho ai ke keiki ma ka haukapila?
• He aha ke ʻano ʻokiʻoki ma laila, inā he?
• E pono anei i ke keiki kekahi mau lāʻau lapaʻau?
• He aha nā pilikia o ke ʻoki kino a me ka anesthesia no kahi keiki?
• ʻEhia ka lōʻihi e ola ai ke keiki ma hope o ke ʻoki kino?
• He aha kaʻu e manaʻo ai e pili ana i ke olakino o kaʻu keiki i ka wā lōʻihi?

Ma waho aʻe o kēia mau nīnau, mai makaʻu e nīnau i kāu kauka i kekahi mea āu e noʻonoʻo nei.

ʻO ka mea hope loa, leka lawe i ka home

ʻO ka Hemihyperplasia, i ʻike ʻia hoʻi he hemihypertrophy a i ʻole overgrowth syndrome, he ʻano hānau kahi e ulu nui ai kekahi ʻaoʻao o ke kino ma mua o kekahi. ʻAʻole paha e ʻike maopopo ʻia kēia mau loli ulu i ka wā hānau. Inā loaʻa i kāu keiki kahi kaulike ʻole i ka lōʻihi o ko lākou mau lālā a i ʻole ka nui o ke kino, e kamaʻilio me ke kauka pediatric. ʻOiai ʻo kēia ʻano e hoʻonui ai i ka pilikia o ka maʻi kanesa, he mea nui e ʻike mua i ka maʻi . Ma ka hopohopo ʻole, a ma ka loaʻa ʻana o ka ʻōlelo aʻoaʻo lapaʻau a me ka mālama ʻana, hiki iā ʻoe ke kōkua i kāu keiki e ola i ke ola olakino.

ʻO ka Hemihyperplasia, ka maʻi Beckwith-Wiedemann, ka maʻi ulu nui, ka puʻupuʻu Wilms, hepatoblastoma, ke kūlana hānau, ke olakino o ke keiki