ʻOi aku ka nui o ke alelo o kāu keiki ma mua o ko lākou waha? E kamaʻilio kākou e pili ana i ka 'Macroglossia'!

Ua ʻike paha ʻoe a lohe paha he nui aku ko kekahi poʻe, ʻoiai nā kamaliʻi liʻiliʻi, he alelo ko lākou ma mua o ko lākou waha? I kekahi manawa hiki iā ʻoe ke ʻike i ke alelo e puka mai ana mai ka waha mai. ʻO kēia ka mea a mākou e kapa nei he 'Macroglossia' i ka ʻepekema lapaʻau. He mea nui paha ka inoa, akā mai makaʻu. I kēia lā e kamaʻilio mākou e pili ana i kēia ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.

No laila, he aha maoli ka 'Macroglossia'? Pehea ʻoe i ʻike ai?

I ka ʻōlelo maʻalahi, ʻo ka 'Macroglossia' he alelo nui loa ia e pili ana i ka nui o ka waha. ʻO ka mea maʻamau ia i nā keiki ʻōpio, akā hiki nō hoʻi ke loaʻa i nā pākeke. I ka hapa nui o nā hihia, he hānau ʻia. ʻO ia hoʻi, pili ia me kekahi mau kūlana genetic e like me ka 'Beckwith-Wiedemann syndrome' a i ʻole 'Down syndrome'. Eia kekahi, hiki ke loaʻa ka 'Macroglossia' ma muli o kekahi mau ʻano maʻi kanesa, nā maʻi koʻikoʻi, a ma hope paha.

Ke noʻonoʻo nei paha ʻoe, 'Ke nānā aku nei ke alelo o kaʻu keiki he nui iki, ʻaʻole au i ʻike inā loaʻa iā ia kēia pū kekahi.' No laila, e hoʻolohe i kēia mau hōʻailona:

• Ke alelo e puka mau ana i waho o ka waha: ʻO kēia ka hōʻailona nui a maopopo loa. Me he mea lā ʻaʻohe wahi e mālama ai i ke alelo i loko o ka waha.
• Nā pilikia hanu:
• I kekahi manawa lohe paha ʻoe i kahi leo nui a kiʻekiʻe ke hanu ʻoe i loko. Me he mea lā e hū ana kekahi. I ka lāʻau lapaʻau, kapa mākou i kēia ʻo 'stridor'.
• A i ʻole, hiki iā ʻoe ke hanu me kahi leo hū , ʻoiai i ka wā e hiamoe ana. Ua kapa ʻia kēia he 'stertor'.
• Paʻakikī ke ale ʻana (dysphagia): Hiki i ke alelo nui ke paʻakikī i ka paʻa ʻana, ka nau ʻana, a me ke ale pono ʻana i ka meaʻai. Hiki i nā pēpē ʻōpio ke paʻakikī i ka omo ʻana i ka waiū umauma a i ʻole ka inu ʻana mai ka ʻōmole. Hiki iā lākou ke manaʻo e like me ka ʻū ʻana i ka wā e ʻai ana.
• Kahe ʻana o ka wai: Ke nui loa ke alelo no ka pani pono ʻana i ka waha, e puka pinepine mai paha ka kuha. E ʻike paha ʻoe ua pulu ka uluna i ka kuha.
• Paʻakikī ke ʻōlelo ʻana: Hiki ke paʻakikī ke haʻi ʻōlelo i nā huaʻōlelo a ʻōlelo maopopo. ʻO kēia no ka mea he ʻōkana ke alelo e kōkua nui ana i ka ʻōlelo ʻana. Ke hiki ʻole iā ʻoe ke haʻi pololei i nā leka, hiki i kāu ʻōlelo ke lilo i mea hūpō.

ʻO ka mea nui e hoʻomanaʻo ai, inā loaʻa i kāu keiki kekahi a ʻoi aku paha o kēia mau hōʻailona, ​​​​hiki iā ia ke lilo i Macroglossia. Eia nō naʻe, he mea nui e hoʻomanaʻo he hiki i kēia mau hōʻailona ke lilo i ʻāpana o kahi maʻi maʻi .

Ke noʻonoʻo nei paha ʻoe inā he maʻi maʻamau kēia. ʻO ka ʻoiaʻiʻo, he maʻi kakaikahi loa ʻo 'Macroglossia'. He mea paʻakikī ke ʻōlelo pololei i ka nui o ka poʻe i loaʻa iā ia. No ka mea, ʻike pinepine ʻia ia he hōʻailona o kahi maʻi ʻē aʻe.

No ke aha i loaʻa ai kēia ʻano ʻano Macroglossia? He aha nā kumu?

Aia kekahi mau kumu o ka macroglossia. He mea kākaʻikahi loa, hānau ʻia kekahi poʻe me kahi alelo nui me ka ʻole o nā pilikia olakino ʻē aʻe. Eia nō naʻe, ʻoi aku ka maʻamau o ia mea e kū mai ma ke ʻano he hōʻailona o kahi maʻi maʻi. Hiki i kekahi o kēia mau maʻi ke hānau ʻia (genetic), aʻo kekahi e hiki ke hana ʻia e kahi maʻi e ulu aʻe ma hope o ke ola. Hiki i kekahi mau ʻoki kino a me nā lāʻau lapaʻau ke hana i ka macroglossia.

E nānā kākou i kēia mau kumu.

He aha nā kūlana hānau (genetic)?

ʻO kēia kūlana, i kapa ʻia ʻo "Macroglossia," ua pili pū me kekahi mau maʻi genetic. Eia kekahi o lākou:

• ʻO ka maʻi Beckwith-Wiedemann: He ʻano kēia e hoʻopilikia ai i ka ulu ʻana o nā keiki. Ma kēia, ʻoi aku ka nui o ke kino o ke keiki a me nā ʻōpū o loko ma mua o ka maʻamau. Eia kekahi, ʻoi aku ka nui o ka pilikia o nā keiki me kēia ʻano i ka loaʻa ʻana o kekahi mau maʻi kanesa o nā kamaliʻi. ʻO ka mea nui loa, ma kahi o 90% o nā keiki me ka maʻi Beckwith-Wiedemann he macroglossia, ʻo ia hoʻi he alelo nui.
• ʻO ka maʻi Hurler/Hunter - mucopolysaccharidosis: He hui kēia o nā maʻi e hoʻopilikia ai i ke ʻano o ka wāwahi ʻana o ko mākou kino i nā molekala kō. I kēia kūlana, hiki ke hoʻonui ʻia ke alelo.
• ʻO ka maʻi Down: Ua lohe paha ʻoe i kēia. Hānau ʻia nā keiki me Down syndrome me kahi chromosome keu. Hiki i kēia ke hoʻololi i ka ulu ʻana o ko lākou lolo a me ke kino, e alakaʻi ana i nā pilikia kino a me ka noʻonoʻo. ʻO Macroglossia kekahi hiʻohiʻona maʻamau o Down syndrome.

He aha nā kūlana i loaʻa?

I kekahi manawa, hiki ke hoʻonui ʻia ke alelo ma muli o kekahi mau kūlana olakino i loaʻa ʻole i ka wā hānau. No ka laʻana, hiki ke hana ʻia e nā maʻi metabolic a endocrine paha, nā kūlana e like me ka hypothyroidism, a i ʻole nā ​​​​maʻi e like me ka diphtheria.

Eia kekahi mau kūlana:

• ʻAmyloidosis: He maʻi kēia e pili ana i kahi protein. Ma kēia, ua waiho ʻia kēia protein i loko o nā ʻiʻo a me nā ʻōpū, e pale ana iā lākou mai ka hana pono ʻana. ʻO ka hōʻailona nui o Amyloidosis ma ka waha ʻo Macroglossia.
• ʻO ka hypothyroidism:He kūlana maʻamau loa kēia. ʻO ka mea e hana ʻia ma ʻaneʻi, ʻaʻole hana kāu kelepa thyroid i ka nui o ka hormone thyroid a hoʻokuʻu iā ia i loko o ke koko. Hoʻolohi kēia i kāu metabolism. ʻO ka Hypothyroidism kahi kumu maʻamau o ka macroglossia, ʻoi aku hoʻi i nā keiki.
• Acromegaly: He maʻi laha ʻole kēia. ʻO ka mea e hana ʻia ma ʻaneʻi, ʻo ia ka nui o ka hormone ulu o kou kino. He nui loa nā alelo, nā ʻauwae, nā lima, a me nā wāwae o ka poʻe me ka acromegaly.
• Diphtheria: He maʻi lele kēia. Hiki i kēia ke hoʻopū i ke alelo.

He aha nā ʻano puʻupuʻu e hoʻoulu ai i ka macroglossia?

Hiki i ka Macroglossia ke hōʻailona o kekahi mau maʻi ʻoi aku ka maikaʻi a me ka maʻi kanesa.

• Lymphangioma: He puʻupuʻu ʻaʻole ia he maʻi kanesa e ulu ana i loko o ka ʻōnaehana lymphatic. Hiki iā ia ke hana i nā puʻupuʻu piha i ka wai ma nā membrane mucous i loko o ka waha, hiki ke hoʻonui i ke alelo.
• Hemangioma: He mau puʻupuʻu ʻaʻole maʻi kanesa kēia. Hoʻokumu ʻia lākou mai nā kīʻaha koko.
• Lymphoma: He maʻi ʻaʻai kēia e hoʻopilikia ai i ka ʻōnaehana lymphatic.

Pehea e ʻike pololei ai nā kauka i kēia maʻi?

Ke ʻike ʻoe a i ʻole kāu keiki i ke kauka, ʻo ka mea mua a lākou e hana ai , ʻo ia ka hoʻokolokolo kino . E komo pū ana kēia me ka hoʻokolokolo pono ʻana i ke alelo, ke poʻo, a me ka ʻāʻī. Ma hope o kēlā, e hana paha lākou i kekahi mau hoʻokolohua e ʻike ai i ka macroglossia a me nā kūlana kumu e kumu ai.

ʻO kekahi o kēlā mau hoʻokolohua:

• ʻO ka CT Scan (Computed Tomography - CT scan): Pili kēia i ka hoʻohana ʻana i nā kukuna X a me kahi kamepiula e lawe i nā kiʻi ʻekolu-dimensional (3D) maopopo o kāu a i ʻole ka waha, ke poʻo, a me ka ʻāʻī o kāu keiki. Hiki i kēia ke hāʻawi iā ʻoe i kahi manaʻo maikaʻi aʻe o ka mea i loko.
• ʻO ke kiʻi ʻana o Magnetic Resonance Imaging (MRI): He hoʻāʻo ʻeha ʻole kēia e hoʻohana ana i kahi magnet nui, nā nalu lekiō, a me kahi kamepiula e hana i nā kiʻi maopopo loa o nā ʻōpū a me nā ʻano i loko o ke kino.

Ma muli o ka ʻike i loaʻa mai kēia mau hoʻokolohua e hoʻoholo ai nā kauka i ke kumu o ke kūlana o 'Macroglossia' a me ka lāʻau kūpono loa no ia mea.

He aha ka mea hiki ke hana ʻia e mālama ai i kēia maʻi i kapa ʻia ʻo 'Macroglossia'?

I kekahi manawa, he mea kupanaha, ʻo kekahi mau keiki i loaʻa i ka macroglossia i ko lākou wā kamaliʻi, i ko lākou ulu ʻana, ulu aʻe ko lākou mau iwi maka, e ʻae ana i kahi no ke alelo e komo i loko o ka waha, a hoʻomaikaʻi kēia kūlana iā ia iho. E like me ke kapa komo e kūpono i ke kino, ulu pū ka waha e kūpono i ke alelo.

Eia naʻe, ʻaʻole kēia ka hihia i nā manawa a pau. Ke mālama nā kauka i ka macroglossia, ʻike mua lākou a mālama i ke kūlana kumu i hoʻokumu ai. A laila wale nō lākou e mālama ai i nā hōʻailona o ka macroglossia.

Hiki i nā lāʻau lapaʻau no ka macroglossia ke komo pū me:

• Lāʻau lapaʻau: Hiki ke hāʻawi ʻia nā lāʻau lapaʻau e like me corticosteroids e hōʻemi i ka pehu ʻana o ke alelo.
• Lapaʻau Orthodontic: Inā ua hoʻopilikia kahi alelo nui i ke kūlana o nā niho, hiki i kēia lāʻau ke kōkua i ka hoʻoponopono ʻana iā ia.
• ʻOki kino: I kekahi mau hihia, ʻoiai inā he mau pilikia koʻikoʻi e like me ka paʻakikī o ka hanu ʻana a i ʻole ka moni ʻana, pono paha ke ʻoki kino e hōʻemi i ka nui o ke alelo. Eia nō naʻe, ma kahi o 10% wale nō o ka poʻe me macroglossia e pono ai ke ʻoki kino.

Hiki iaʻu ke hōʻemi i ka pilikia o kaʻu keiki i ka hoʻomohala ʻana i ka macroglossia?

ʻO ka hapa nui o ka manawa, he hānau ʻia ka macroglossia, ʻo ia hoʻi, pili ia i nā kūlana genetic, no laila ʻaʻohe mea hiki iā mākou ke hana e pale aku ai. Eia nō naʻe, i kekahi manawa hiki ke hana ʻia e nā maʻi lele, no laila ʻo ka pale ʻana iā ʻoe iho mai ia mau maʻi hiki ke hōʻemi i kēia pilikia i kekahi ʻano. No ka laʻana, he mea nui e loaʻa ka lāʻau pale no nā maʻi e like me ka diphtheria.

Inā loaʻa ka Macroglossia i kaʻu keiki, he aha kaʻu e manaʻo ai?

I kēia manawa, ua ʻike mākou ʻo ka macroglossia he hōʻailona ia o kahi pilikia ma lalo, inā he maʻi hānau a i ʻole kekahi maʻi ʻē aʻe. No laila, ʻo ke kī, ʻo ia ka ʻike a me ka mālama ʻana i kēlā maʻi ma lalo.

Inā loaʻa i kāu keiki ka macroglossia, aia paha iā ia ka lāʻau lapaʻau no ke kūlana kumu i hoʻokumu ai. ʻO kāu mea nui ka hahai ʻana i kēlā hoʻolālā lapaʻau. E kamaʻilio me kāu kauka e pili ana i kēia. E haʻi aku ʻo ia iā ʻoe i ka mea e manaʻo ai a me ka wā e ʻike hou ai iā ia.

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

Inā loaʻa i kāu keiki ka macroglossia, nui paha kāu mau nīnau. No ke aha i hana ʻia ai kēia a me nā mea e manaʻo ʻia mai ka lāʻau lapaʻau. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i kāu kauka:

• He aha maoli ka manaʻo o 'Macroglossia'?
• Pehea lā e pili ai kēia i kaʻu keiki? E pili anei ia i ke ola o kēlā me kēia lā?
• No ke aha i loaʻa ai i kaʻu keiki ka 'Macroglossia'? He aha ke kumu?
• He aha nā lāʻau lapaʻau āu e ʻōlelo nei? Pehea ka holomua o kēlā mau lāʻau lapaʻau?
• ʻEhia ka lōʻihi o ka lāʻau lapaʻau? He aha nā hopena ʻaoʻao e hiki iaʻu ke manaʻo?
• Aia kekahi ala kūikawā e mālama ai au i kaʻu pēpē ma ka home? (e.g. hānai ʻana, hoʻomoe ʻana)

Mai makaʻu e nīnau i kēia mau nīnau. He mea nui loa ia e hoʻopau i kou mau kānalua a pau. Na ke kauka e wehewehe i nā mea āpau iā ʻoe.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

ʻO Macroglossia, a i ʻole ke alelo i hoʻonui ʻia, he mea hopohopo iki paha ia. Eia nō naʻe, he hōʻailona pinepine ia o kahi maʻi maʻi. ʻO ka mea nui loa, ʻaʻole e hopohopo a ʻimi koke i ke kōkua lapaʻau.

• Inā manaʻo ʻoe he nui loa ke alelo o kāu keiki, a i ʻole inā loaʻa iā lākou kekahi o nā hōʻailona a mākou i kūkākūkā ai, e ʻike i kahi pediatrician a i ʻole ke kauka pepeiao, ihu, a me ka ʻāʻī (ENT).
• Hiki ke mālama ʻia ka Macroglossia ma ka ʻike ʻana i ke kumu kumu a me ka mālama kūpono ʻana iā ia.
• No kekahi mau keiki, hiki ke hoʻomaikaʻi kēia ʻano ma kāna iho i ko lākou wā ʻelemakule.
• He mea nui loa e hahai pono i nā ʻōlelo aʻo a nā kauka a e hāʻawi i ke keiki i ke kākoʻo a me ke aloha e pono ai lākou.

E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Aia kekahi mau mākua ʻē aʻe e kū nei i nā kūlana like. Me ke alakaʻi lapaʻau kūpono a me kou hoʻolaʻa ʻana, hiki iā ʻoe ke hoʻokō i nā hopena maikaʻi loa no kāu keiki.