Ke hoʻomaka koke nei kāu keiki liʻiliʻi e ʻakaʻaka nui me ke kumu ʻole? ʻAʻole hiki ke hoʻōki i kēlā ʻakaʻaka, e like me ka hoʻouka kaua ʻana? A i ʻole ke hōʻike nei kāu kaikamahine a keiki kāne paha i nā hōʻailona o ka wā ʻōpiopio mua? He mea maʻamau iā ʻoe, ma ke ʻano he makua, ke manaʻo nui i ka makaʻu a me ka hopohopo ke ʻike ʻoe i kēia mau mea. I kēia lā ke kamaʻilio nei mākou e pili ana i kahi maʻi lolo kakaʻikahi loa, akā he mea nui e ʻike.
He aha maoli ka Hypothalamic Hamartoma (HH)?
I ka ʻōlelo maʻalahi, he ʻano puʻupuʻu ʻaʻole ia e like me ka maʻi kanesa e ulu ana i loko o ko kākou lolo, ma kahi ʻāpana koʻikoʻi i kapa ʻia ʻo hypothalamus, ma kahi o ka nui o ka ʻalemona.
E noʻonoʻo i ka hypothalamus ma ke ʻano he kikowaena mana nui o ko kākou kino. He kuleana koʻikoʻi kāna i ka mālama ʻana i nā mea āpau i ke kaulike (homeostasis), e hoʻopili ana i ka ʻōnaehana hormonal a me ka ʻōnaehana nerve i loko o ko kākou kino.
ʻO kekahi o nā mea a ka hypothalamus e hoʻomalu ai:
- Ke koko
- Mahana kino
- Nā manaʻo o ke kaumaha, ka hopohopo
- Ka pōloli a me ka make wai
- Ka hoʻokuʻu ʻia ʻana o nā hormones mai ka pituitary gland
- Nā pōʻaiapuni hiamoe a ala
Hoʻomaka kēia puʻupuʻu HH e ulu i ka wā e noho ana ke keiki i loko o ka ʻōpū . I ka ulu ʻana o ka lolo o ke keiki, ulu mālie kēia puʻupuʻu. Akā, mai hopohopo, ʻaʻole ia e laha i nā ʻāpana ʻē aʻe o ka lolo a i ʻole nā ʻāpana ʻē aʻe o ke kino. ʻO ka hapa nui, hoʻokahi wale nō puʻupuʻu, akā he kakaikahi loa ka hiki ke loaʻa he nui.
ʻO ka mea maikaʻi loa, aia nā lāʻau lapaʻau maikaʻi e kaohi ai i nā hōʻailona i hoʻokumu ʻia e kēia ʻano.
He aha nā hōʻailona o kēia maʻi?
ʻAʻole like kēia mau hōʻailona no kēlā me kēia keiki a hiki ke ʻokoʻa mai kekahi keiki a i kekahi. Eia nō naʻe, aia ʻekolu mau pūʻulu nui o nā hōʻailona e hiki ke ʻike ʻia.
1. Ka wā ʻōpiopio mua
ʻO kēia kekahi o nā hōʻailona nui o kēia maʻi. I ka ʻōlelo maʻalahi, hoʻomaka ke kino o ke keiki e oʻo i ka moekolohe ma mua o ka makahiki maʻamau. Ua kapa ʻia kēia ʻo "Central Precocious Puberty". Hana ʻia kēia no ka mea hoʻouna ka lolo i nā hōʻailona e hana i nā hormones moekolohe i ka wā mua loa.
Ma keʻano laulā, inā hōʻike ke kaikamahine i nā hōʻailona o ka wā ʻōpio ma mua o 8 mau makahiki a me ke keikikāne ma mua o 9 mau makahiki, pono mākou e hopohopo.
| Nā hiʻohiʻona i ʻike ʻia i nā kaikamahine | Nā ʻano i ʻike ʻia i nā keikikāne |
|---|---|
| Ka ulu ʻana o ka umauma | Ka leo hoʻonui/hohonu ʻana o ka leo |
| Ka ulu ʻana o ka lauoho ma nā armpits a me nā wahi pilikino | Ka ulu ʻana o ka lauoho ma ka maka, nā ʻūpā lima, a me nā wahi pilikino |
| Ka hoʻomaka ʻana o ka wahine (menstruation) | Ka hoʻonui ʻia ʻana o nā testicles a me ka penis |
| ʻAkika | ʻAkika |
2. Nā hopu ʻana
He mea maʻamau nō hoʻi nā hopu ʻana i kēia maʻi. Aia kekahi ʻano hopu kūikawā a maʻamau i kēia maʻi. Ua kapa ʻia ʻo ia he hopu Gelastic .
ʻO ka hopu ʻana o ka gelastic kahi hana uila maʻamau ʻole i loko o ka lolo e hoʻoulu ai i ka ʻakaʻaka hiki ʻole ke kāohi me ke kumu ʻole. Ua like ia me ka ʻakaʻaka nui.
ʻAʻole kēia ʻakaʻaka he hanana hauʻoli. He mau kekona wale nō paha ka lōʻihi, akā hiki ke hana i nā manawa he nui i ka lā, a i kekahi mau hihia koʻikoʻi, i nā manawa he nui i ka hola. ʻO ka hapa nui o ka manawa, hoʻomaka kēia ʻano hopu ma mua o ka piha ʻana o ke keiki i hoʻokahi makahiki . Akā e emi mālie ana ma hope o ka piha ʻana o 10 makahiki.
Eia kekahi, hiki ke ʻike ʻia nā ʻano ʻē aʻe o ka maʻi ʻōhū.
- Nā kuʻi ʻana o ke kino (nā hoʻouka hāʻule): Ka nalowale koke ʻana o ke kaohi o ke kino, nāwaliwali o nā ʻiʻo, a me ka hāʻule ʻana i ka honua.
- Nā kuʻi ʻana o Dacrystic: Uē mau me ke kumu ʻole, e like me ka ʻakaʻaka.
- Nā hopu ʻana o ka tonic-clonic: E like me kā kākou e ʻike nei, he hopu nui ia e hoʻoulu ai i ka nalowale o ka ʻike a me ka wili ʻana o ke kino.
3. Nā Hōʻailona Neurological a me nā Hoʻololi ʻAno
ʻOiai ʻo ka hypothalamus kahi ʻāpana o ka lolo e kōkua ana i ka hoʻomalu ʻana i ko kākou mau manaʻo a me ke ʻano, hiki i ka HH ke hoʻopilikia i ke ʻano o ke keiki, ke ʻano, a me ka hiki ke aʻo. ʻO nā pilikia e hiki mai ana:
- Ka paʻakikī i ka hoʻolohe ʻana a me ka hyperactivity (Attention-deficit/hyperactivity disorder - ADHD)
- Hana ʻino a kolohe `(Conduct disorder)`
- Ke kīnā noʻonoʻo
- Nā maʻi naʻau
- Ka maʻi kūʻē kūʻē
- Hana pane
- Nā pilikia hoʻomanaʻo pōkole
Aia kekahi mau ʻano hematomas hypothalamic?
ʻAe, hiki ke hoʻokaʻawale ʻia kēia puʻupuʻu i ʻelua ʻano nui ma muli o kona wahi ma ka hypothalamus a me nā hōʻailona i hoʻokumu ʻia.
1. ʻO ka ʻeha Intrahypothalamic: Ma kēia ʻano, aia ka puʻupuʻu ma hope o ka hypothalamus. Hoʻopilikia kēia i ka hana uila o ka lolo, e alakaʻi ana i kahi pilikia kiʻekiʻe o nā hopu ʻana a me nā pilikia pili i ka nohona .
2. ʻO ka lesion parahypothalamic (pedunculated lesion): Maanei aia ka puʻupuʻu ma mua o ka hypothalamus. ʻO kēia ka hōʻailona nui i ʻike ʻia ma muli o ka wā ʻōpiopio .
Loaʻa paha i kekahi mau keiki nā ʻano ʻelua i ka hui pū ʻana.
He aha ke kumu o kēia kūlana?
ʻAʻohe kumu kikoʻī no kēia . ʻAʻohe ala e pale aku ai. ʻO ka hapa nui o ka manawa, hiki wale mai ia. ʻO ia hoʻi, ʻaʻole ia he maʻi hoʻoilina. He haʻahaʻa loa ka manawa e loaʻa ai i kāu keiki no ka mea ua loaʻa i kekahi o kou ʻohana.
Akā, ua ʻike ʻia ma nā noiʻi hou nei aia kekahi mau loli i loko o ka gene `GLI3` i loko o nā ʻiʻo o kēia mau puʻupuʻu. Ke hoʻomau nei ka noiʻi ʻana i kēia.
Ua ʻike ʻia hoʻi he pilina paha kekahi ʻano maʻi i kapa ʻia ʻo "Pallister-Hall syndrome (PHS)" me HH.
Pehea e ʻike pono ai i kēia maʻi?
E kauoha paha kāu kauka i kahi scan MRI (Magnetic Resonance Imaging) o kou lolo e hōʻoia i ka hōʻailona. Hiki i kahi MRI ke hana i nā kiʻi maopopo loa a kikoʻī hoʻi o ka lolo.
Pono paha e hāʻawi ʻia i nā keiki ʻōpio i ka lāʻau hoʻomālielie māmā i ʻole lākou e neʻe i ka wā o ka MRI, no ka mea, hiki i ka neʻe ʻana ke kumu i ʻole e maopopo nā kiʻi ma ke kiʻi.
Inā loaʻa i kāu keiki nā ʻōʻili, ua ʻōlelo ʻia hoʻi kahi hoʻokolohua EEG (Electroencephalogram) . Hoʻāʻo kēia i ka hana uila o ka lolo.
Eia kekahi, hiki ke hana ʻia nā hoʻāʻo neurological e ana i ka noʻonoʻo ʻana o ke keiki, ke aʻo ʻana, a me nā hiki ke hoʻomanaʻo, a hiki ke hana ʻia nā hoʻāʻo koko e nānā i nā pae hormone. Hiki i ka ʻike mai kēia mau hoʻāʻo ke kōkua nui i ka hoʻolālā ʻana i ka lāʻau.
Pehea e mālama ʻia ai?
ʻElua mau pahuhopu nui i ka mālama ʻana i ka HH. ʻO kekahi ka kaohi ʻana i ka wā ʻōpiopio mua, a ʻo kekahi ka kaohi ʻana i nā maʻi ʻōʻili.
- No ka wā ʻōpiopio: Hoʻohana ʻia nā lāʻau lapaʻau no kēia. Hāʻawi ʻia nā agonists hormone hoʻokuʻu gonadotropin ma ke ʻano he inikini mahina. Hoʻomalu kēia i ka hoʻokuʻu ʻia ʻana o nā hormones a hoʻomalu i nā hōʻailona o ka wā ʻōpiopio. Ke hiki ke keiki i ka makahiki e pono ai ke kū ʻana o ka wā ʻōpiopio, e hoʻōki ke kauka i ka lāʻau lapaʻau.
- No nā hopu ʻana: ʻAʻole pane maikaʻi nā 'Gelastic seizures' a mākou i kamaʻilio ai ma mua i nā lāʻau lapaʻau antiseizure maʻamau. No laila , pono pinepine ke ʻoki kino a i ʻole nā kaʻina hana kūikawā ʻē aʻe .
Aia ma lalo iho kekahi o nā hana nui i hoʻohana ʻia e wehe a luku paha i ka hematoma e kāohi i nā hopu ʻana.
| ʻAno lapaʻau | Ua wehewehe maʻalahi ʻia |
|---|---|
| ʻO ke ʻoki kino ʻana o ka pahi Gamma | ʻAʻole kēia he ʻoki kino maoli. ʻAʻole ʻoki ʻia ka ʻili. Hoʻopili wale ʻia kahi kukuna ikehu ikaika (radiation) i kahi o ka puʻupuʻu lolo a luku iā ia. |
| Resection (ʻoki wehe) | Hoʻoneʻe ke kauka lapaʻau i ka puʻupuʻu ma ka wehe ʻana i ke poʻo (craniotomy), a i ʻole ka hana ʻana i kahi puka liʻiliʻi i loko o ke poʻo, a hoʻokomo i kahi mea hana e like me ka endoscope. |
| ʻO ka hoʻopau ʻana o ka laser Stereotactic | He ʻano hana hoʻopilikia iki kēia. Hoʻouna ʻia kahi kukuna laser ma o kahi kaula fiber optic e luku i ka puʻupuʻu. |
| ʻO ka hoʻoheheʻe ʻana o ka stereotactic | Hoʻohana kēia ʻano hana i ka wela e luku ai i ka puʻupuʻu. Hoʻokomo ʻia nā mea hana lahilahi ma o ke poʻo a hoʻomehana ʻia me nā nalu lekiō e luku ai i nā ʻiʻo puʻupuʻu. |
Eia kekahi, hiki ke hāʻawi ʻia ke kākoʻo hoʻonaʻauao kūikawā, ka lāʻau lapaʻau, a me ka lāʻau lapaʻau ma ke kula e hoʻoponopono i nā pilikia o ke keiki no ke ʻano a me ke aʻo ʻana.
Āhea ʻoe e ʻike ai i ke kauka?
Ma ke ʻano he makuahine a makua paha, ʻo ʻoe ka mea ʻike maikaʻi loa i kāu keiki. No laila, inā ʻike ʻoe i kekahi mau loli a i ʻole nā hōʻailona ʻē i kāu keiki, mai hoʻowahāwahā iā lākou. Inā loaʻa i kāu keiki kekahi o kēia mau hōʻailona, e ʻimi koke i ke kōkua lapaʻau.
- Nā Huʻi: ʻOi aku ka ʻakaʻaka me ke kumu ʻole.
- Nā hōʻailona o ka wā ʻōpiopio: E like me kā mākou i kamaʻilio ai ma mua, nā mea e like me ka ulu ʻana o ka lauoho a me nā loli o ka leo.
- Nā pilikia aʻo: hiki ʻole ke noʻonoʻo, nā loli i ka hoʻomanaʻo.
- Nā loli o ke ʻano: Ke huhū nei i nā mea liʻiliʻi, lilo i mea hoʻouka kaua.
- Nā hemahema hormonal: make wai nui, nā loli i ka pōloli, nā loli koke o ka naʻau.
E makaʻu paha ʻoe ke ʻike ʻoe ua loaʻa i kāu keiki ka HH. Akā e hoʻomanaʻo, aia nā lāʻau lapaʻau kūpono loa no kēia. E kamaʻilio me kāu kauka a koho i ka lāʻau lapaʻau kūpono loa no kāu keiki.
Leka Lawe-Home
- He ʻōʻō laha ʻole ka Hypothalamic Hamartoma (HH) i hoʻokumu ʻia i loko o ka lolo i ka wā hānau.
- ʻO nā hōʻailona nui ʻelua o kēia, ʻo ia ka hopu ʻana i nā maʻi gelastic a me ka wā ʻōpiopio.
- ʻO ka hoʻāʻo nui i hoʻohana ʻia no ka ʻike ʻana he scan MRI o ka lolo.
- Hiki ke kaohi pono ʻia ka wā ʻōpio mua ma o ka lāʻau lapaʻau, ke ʻoki ʻana i ka maʻi epilepsy, a i ʻole nā ʻano hana kūikawā ʻē aʻe.
- Inā loaʻa iā ʻoe kahi kānalua iki ua loaʻa i kāu keiki kēia mau hōʻailona, e ʻoluʻolu e nīnau koke aku i kahi pediatrician a neurologist paha.
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