Pehea e mālama ai i nā loli i hoʻokumu ʻia e Beckwith-Wiedemann Syndrome

Anter

• ʻIke o Beckwith-Wiedemann maʻi maʻi

ʻO ka mālama ʻana no ka maʻi ʻo Beckwith-Wiedemann, kahi maʻi kūlohelohe e hiki ai i ka ulu ʻana o kekahi mau ʻāpana o ke kino a i ʻole nā ​​mea ʻokoʻa, ʻokoʻa e like me nā loli i hana ʻia e ka maʻi a, no laila, alakaʻi pinepine ʻia ka lapaʻau e kahi hui mai nā ʻoihana olakino ʻē aʻe. hiki ke hoʻokomo i ka pediatrician, ka cardiologist, ka niho niho a me kekahi mau kaukukō, no ka laʻana.

No laila, kaukaʻi ʻia i nā ʻōuli a me nā hana hewa i hoʻokumu ʻia e Beckwith-Wiedemann Syndrome, ʻo nā ʻano nui o ka mālama ʻana:

• Hoʻoemi i nā pae kō kō: hana pololei ʻia nā injection o ka serum me ka glucose i loko o ka aa a pale i ka loaʻa ʻole o ke kō mai ke kumu o nā hoʻololi neurological koʻikoʻi;
• Umbilical a inguinal hernias paha: ʻaʻole pono ka lapaʻau ma muli o ka nalo ʻana o ka hapanui o ka hernias e ka makahiki mua o ke ola, akā naʻe, inā hoʻomau ka hoʻonui ʻana o ka hernia i ka nui a i ʻole ʻaʻole e nalo a hiki i ka piha ʻana o 3 mau makahiki, pono paha ke ʻoki kino;
• Nui loa ke alelo: ʻoki hiki ke hoʻohana e hoʻoponopono i ka nui o ke alelo, akā naʻe, pono e hana ʻia ma hope o 2 mau makahiki. Hiki i kēlā makahiki, hiki iā ʻoe ke hoʻohana i kekahi mau silikona nipples e kōkua i kāu pēpē e ʻai maʻalahi;
• Nā pilikia puʻuwai a gastrointestinal paha: Hoʻohana ʻia nā lāʻau e mālama ai i kēlā me kēia ʻano pilikia a pono e lawe ʻia i loko o ke ola. I nā hihia ʻoi loa, koi paha ke kauka i ka hana ʻana i ke ʻoki e hoʻomaikaʻi i nā loli nui i ka puʻuwai, no ka laʻana.

Hoʻohui ʻia, ʻoi aku ka nui o ka loaʻa ʻana o ka maʻi ʻaʻai i nā pēpē i hānau ʻia me Beckwith-Wiedemann Syndrome, no laila inā ʻike ʻia ka ulu ulu ʻana, pono paha ke ʻoki ʻia e wehe i nā hunaola tumo a i ʻole nā ​​lāʻau e like me chemotherapy a i ʻole radiation therapy.

Eia nō naʻe, ma hope o ka lapaʻau ʻana, ʻo ka hapa nui o nā pēpē me Beckwith-Wiedemann maʻi e hoʻomōhala i kahi ʻano maʻamau, me ka pilikia ʻole i ka wā makua.

ʻIke o Beckwith-Wiedemann maʻi maʻi

ʻO ke kuhi o ka maʻi ʻo Beckwith-Wiedemann hiki ke hana ʻia ma ka nānā ʻana i nā malformation ma hope o ka hānau ʻia ʻana o ka pēpē a i ʻole ma o nā hōʻike diagnostic, e like me ka ultrasound ʻōpū, no ka laʻana.

Eia hou, e hōʻoia i ka hōʻoia, hiki i ke kauka ke kauoha i kahi hoʻokolohua koko e hana i kahi hoʻokolohua kūlohelohe a loiloi inā aia he mau loli i ka chromosome 11, ʻoiai ʻo kēia ka pilikia o nā kūpuna ma ke kumu o ka maʻi.

Hiki ke hele aku ka maʻi ʻo Beckwith-Wiedemann mai nā mākua a i nā keiki, no laila inā loaʻa ka maʻi i kekahi makua ma ke ʻano he pēpē, paipai ʻia ka ʻōlelo aʻoaʻo ʻaoʻao ma mua o ka hāpai ʻana.