Hopohopo e pili ana i ka ulu ʻana o kāu keiki ma muli o ka achondroplasia? E aʻo kākou e pili ana i ka lāʻau Voxzogo (vosoritide)

E hopohopo paha ʻoe, a makaʻu paha, e pili ana i ka ulu ʻana o kāu keiki, ʻoiai ko lākou kiʻekiʻe. He mea maʻamau ke manaʻo i kēia ʻano ma ke ʻano he makua e noho nei me kahi maʻi i kapa ʻia ʻo Achondroplasia. Akā, ʻaʻole ʻoe hoʻokahi. Me ka holomua o ka ʻepekema lapaʻau, aia nā lāʻau lapaʻau hou e hiki ke kōkua i kēia mau maʻi. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi lāʻau i kapa ʻia ʻo Voxzogo, ka mea i lawe mai i kahi manaʻolana hou, ʻoi aku hoʻi no nā keiki me Achondroplasia.

He aha maoli ka achondroplasia?

I ka ʻōlelo maʻalahi, ʻo Achondroplasia kahi maʻi genetic e hoʻoulu ai i ka dwarfism. Hoʻopilikia ia i ke ʻano o ka ulu ʻana o nā iwi o nā keiki, ʻoiai nā iwi lōʻihi (nā mea ma nā lima a me nā wāwae). He maʻi kakaikahi loa ia, e kū ana ma kahi o hoʻokahi i loko o 15,000 a 40,000 mau hānau ʻana.

I ka hapanui o nā hihia, ʻaʻole kēia he mea i hoʻoilina ʻia mai nā mākua mai, akā he mea i loaʻa i loko o ke kino ponoʻī o ke keiki ma muli o kahi loli genetic hou (mutation). No laila, mai manaʻo hewa no kēia. Hiki i kēia kūlana ke hoʻoulu i nā pilikia olakino hou aʻe i ka wā e ulu ana ke keiki, e like me ka momona, nā maʻi pepeiao, a me nā pilikia me nā aʻalolo ma ka iwi kuamoʻo a me ka lolo.

Aia kekahi mau hōʻailona maʻamau e ʻike ʻia i loko o kahi keiki me ka achondroplasia.

Pehea e hana ai ʻo Voxzogo?

I mea e hoʻomaopopo ai i kēia, pono mua kākou e aʻo iki e pili ana i nā papa ulu . E noʻonoʻo i kēia mau papa ulu ma nā wēlau o ko kākou mau iwi lōʻihi e like me kahi e waiho mau ʻia ai ka asphalt hou i ke kūkulu ʻana i ke alanui. Hana ʻia lākou me kahi ʻiʻo ikaika a palupalu i kapa ʻia ʻo cartilage. I ka ulu ʻana o ke keiki, lilo kēia cartilage i iwi, a hoʻolōʻihi ka iwi. Ke ulu piha ke keiki, pani ʻia kēia mau papa ulu, a pau ka ulu ʻana o ke kiʻekiʻe.

I nā keiki me ka achondroplasia, hoʻopilikia kahi mutation i loko o nā genes (DNA) i kekahi o nā ʻōnaehana hoʻouna leka o ke kino. Aia ʻelua mau ʻōnaehana leka i loko o ko mākou kino e hoʻopilikia i ka ulu ʻana o ka iwi:

1. ʻŌnaehana e hoʻonui ai i ka ulu ʻana o ka iwi.

2. ʻO ka ʻōnaehana e hōʻemi (kāohi) i ka ulu ʻana o ka iwi.

I loko o ka achondroplasia, ʻo ka loli genetic ke kumu o ka ʻōnaehana hōʻailona e hoʻolohi ana i ka ulu ʻana o ka iwi e lilo i overactive.

ʻO ka pahuhopu o kēia lāʻau lapaʻau, ʻo ia ka hoʻohana ʻana i kēia lāʻau lapaʻau i ka wā e wehe ʻia ana nā papa ulu o ke keiki, e kōkua ana iā lākou e hoʻokō i ka ulu nui loa. Ke pani ʻia nā papa ulu, ʻo ia hoʻi ke oki nei ke keiki i ka ulu ʻana, ua oki ka lāʻau lapaʻau. Hoʻoholo ʻia kēia e kāu kauka.

Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?

He inikini ʻo Voxzogo i hāʻawi ʻia ma lalo o ka ʻili o kāu keiki i kēlā me kēia lā, ma kahi o ka manawa like i kēlā me kēia lā . Ua hoʻolālā ʻia ia i hiki iā ʻoe ke hāʻawi ma ka home.

• Nā wahi i hoʻokomo ʻia: Hoʻokomo ʻia kēia ma lalo o ka ʻili o kāu keiki. Hiki iā ʻoe ke hoʻohana i ka ʻūhā o kāu keiki, ka ʻōpū (ma kahi o ʻelua ʻīniha mai ka piko), nā puʻupuʻu, a i ʻole ke kua o ko lākou lima luna .
• ʻO ka mea nui loa: Mai hoʻomau i ka hoʻokomo ʻana ma kahi hoʻokahi. Inā ʻoe e hoʻokomo ma kahi hoʻokahi i kēia lā, e hoʻokomo ma kahi ʻē aʻe i ka lā ʻapōpō. Kāhea mākou i kēia 'injection site rotation'. Hiki i kēia ke hōʻemi i ka ʻoluʻolu ʻole e like me ka ʻulaʻula a me ka ʻeha. Mai hoʻokomo i nā wahi me ka ʻili pehu, palapū, ʻulaʻula, a paʻakikī paha.
• He mea pono e hana: Hoʻokahi hola ma mua o ka inikini, e hānai i kāu keiki i kahi meaʻai maikaʻi a hāʻawi iā ia i kahi aniani nui (ma kahi o 8-10 auneke) o ka wai, ka waiū, a i ʻole ka wai huaʻai. Hiki i kēia lāʻau lapaʻau ke hoʻohaʻahaʻa i ke koko, hiki iā ʻoe ke luhi a poniuniu paha. ʻO ka hāʻawi ʻana i kāu keiki i ka meaʻai a me nā wai ma mua e hiki ke hōʻemi nui i kēia pilikia.

Hoʻoholo ʻia ka nui o ka lāʻau lapaʻau i hāʻawi ʻia i ke keiki e ke kaumaha o ke keiki. Pono ʻoe e haʻi i ke kauka inā loli ke kaumaha o ke keiki. Na kāu kauka e aʻo iā ʻoe pehea e hoʻokomo pololei ai i kēia i loko o kāu keiki. Mai ho'āʻo e hana i kēia iā ʻoe iho a hiki i kou loaʻa ʻana o kēlā aʻo. E heluhelu pono hoʻi i ka pepa kuhikuhi e hele mai me ka lāʻau lapaʻau.

He aha nā hopena ʻaoʻao e hiki mai ana?

E like me nā lāʻau lapaʻau āpau, hiki iā Voxzogo ke hana i kekahi mau hopena ʻaoʻao. He mea nui e makaʻala i kēia mau mea.

• Nā hopena ma kahi o ka inikini: ʻO kēia ka hopena maʻamau. Hiki ke loaʻa ka ʻulaʻula, ka pehu ʻana, ka maneʻo, ka palapū, a i ʻole ka ʻeha ma kahi o ka inikini. Hiki ke mālama ʻia kēia ma ke kau ʻana i kahi ʻūlū anuanu i ka wahi. E kamaʻilio me kāu kauka ma mua o ka lawe ʻana i kekahi lāʻau lapaʻau no ka ʻeha a i ʻole ka maneʻo.
• Ke Koko Haʻahaʻa: E like me kā mākou i ʻōlelo ai ma mua, ʻoi aku ka maikaʻi o ka pale ʻana i kēia ma ka hāʻawi ʻana i ka meaʻai a me ka mea inu ma mua o ka inikini. Inā manaʻo kāu keiki ua poniuniu a luhi paha, e haʻi iā lākou e ala mālie, me ka hoʻohana ʻana i ke kākoʻo inā pono. Inā manaʻo lākou ua poniuniu, e haʻi iā lākou e noho a moe paha. Inā hoʻomau a ʻoi aku paha ka ʻino o kēia kūlana, e ʻimi i ke kōkua lapaʻau.
• ʻŌpū ʻeha a me ka luaʻi: ​​Loaʻa paha i kekahi mau keiki ka ʻōpū ʻeha (gastroenteritis) a i ʻole ka luaʻi ʻana. I loko o kēia manawa, e hāʻawi iā lākou i nā wai he nui e inu ai a me nā meaʻai māmā a palupalu hoʻi (e.g., crackers, toast, bananas, soup māmā). Inā hoʻomau kēia mau mea, e haʻi i kāu kauka.
• ʻEha hui: Hiki i kekahi mau keiki ke ʻeha i nā hui. E kamaʻilio pū me kāu kauka e pili ana i kēia.
• Nā loli i nā hoʻāʻo koko: Hiki i kēia lāʻau lapaʻau ke hoʻonui i ka pae o kahi hoʻāʻo koko i kapa ʻia ʻo alkaline phosphatase. He ana kēia o ka hana o ke akepaʻa a i ʻole ka iwi. No laila, he mea nui loa ia e hoʻomau i nā hoʻāʻo koko e like me ke kauoha a kāu kauka.

ʻEkolu mau mea nui e ʻike ai

ʻEhia ka lōʻihi o ka hana ʻana o kēia lāʻau lapaʻau?

Wahi a ka noiʻi, he mau mahina ka lōʻihi e ʻike ai i ka piʻi ʻana o ka ulu ʻana o nā keiki. Eia nō naʻe, ʻokoʻa paha nā hopena mai kēlā keiki a kēia keiki. No laila e hoʻomanawanui a hoʻomau i ka lāʻau e like me ka ʻōlelo a ke kauka. Nānā mau ke kauka i ka holomua o ke keiki.

No wai kēia lāʻau lapaʻau i kūpono ʻole?

Inā loaʻa i kāu keiki kekahi mau maʻi e pili ana i ka puʻupaʻa, e hoʻomaopopo pono i ke kauka. Hiki i ke kauka ke hoʻoholo ʻaʻole e hāʻawi i kēia lāʻau lapaʻau i nā keiki me kekahi mau maʻi puʻupaʻa koʻikoʻi.

He lāʻau lapaʻau kūikawā anei kēia?

ʻAe. He lāʻau lapaʻau kūikawā ʻo Voxzogo.ʻO ia hoʻi, ʻaʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke loaʻa ma kahi hale kūʻai lāʻau maʻamau. He mau lāʻau lapaʻau pipiʻi kēia no nā maʻi kakaʻikahi a paʻakikī paha. Aia kekahi kaʻina hana kūikawā no ka loaʻa ʻana o kēia mau mea. Ma hope o ke kau ʻana o kāu kauka i kēia lāʻau lapaʻau, e hoʻokaʻaʻike aku kahi hale kūʻai lāʻau lapaʻau kūikawā iā ʻoe a wehewehe pehea e lawe ʻia ai ka lāʻau lapaʻau i kou home.