Aia kāu pēpē i ka pilikia? E kamaʻilio kākou e pili ana i ka Fetal Hydantoin Syndrome

Inā hāpai ʻoe a i ʻole e hoʻolālā ana e lilo i makuahine koke, he mea nui e makaʻala i nā lāʻau lapaʻau āu e lawe ai. ʻOi loa aku inā ʻoe e lawe ana i ka lāʻau lapaʻau no kahi maʻi e like me ka maʻi epilepsy (seizures), hopohopo paha ʻoe inā e hoʻopilikia ka lāʻau lapaʻau i kāu pēpē i hānau ʻole ʻia. No laila, i kēia lā e kamaʻilio mākou e pili ana i nā kūlana kikoʻī e hiki ke kū i loko o ka pēpē ma muli o kekahi mau lāʻau lapaʻau i lawe ʻia i ka wā hāpai.

He aha ka Fetal Hydantoin Syndrome?

I ka ʻōlelo maʻalahi, ʻo ka Fetal Hydantoin Syndrome kahi hōʻiliʻili o nā hōʻailona e hiki ke kū i nā pēpē i hōʻike ʻia i kekahi mau lāʻau hopu i lawe ʻia e ka makuahine i ka wā hāpai, ʻoiai ʻo Phenytoin (inoa inoa ʻo Dilantin®) . Kāhea nā kauka i kēia mau lāʻau lapaʻau he teratogens , ʻo ia hoʻi he mau mea ia e hiki ke hoʻopilikia i ka ulu maʻamau o ka fetus.

Hiki ke ʻike ʻia kekahi o nā hōʻailona o kēia maʻi i ka wā hānau. No ka laʻana, hiki ke ʻike ʻia kekahi mau kīnā hānau ma ka maka, ke poʻo, a me nā manamana lima o ka pēpē.

Eia nō naʻe, ʻaʻole paha e ʻike koke ʻia kekahi mau hōʻailona. ʻAʻole paha e ʻike ʻia nā lohi o ka ulu ʻana a me nā kīnā noʻonoʻo a hiki i ka wā ma hope. No laila, pono nā kauka a me nā ʻohana e hana pū e ʻimi i ke kumu o ke kūlana a hāʻawi i ka pēpē i ka lāʻau a me ke kākoʻo e pono ai.

He mea nui e hoʻomaopopo ʻia, akā naʻe, ʻaʻole nā ​​​​pēpē a pau i hōʻike ʻia i kēia mau lāʻau lapaʻau e loaʻa i ka Fetal Hydantoin Syndrome. I ka hapa nui o nā hihia, ʻaʻole ia. Eia nō naʻe, no ka mea aia kekahi mau pilikia, e nānā pono kāu kauka iā ʻoe i kou wā hāpai. Pono paha e hoʻololi ʻia kāu mau lāʻau lapaʻau.

He mea nui loa ʻaʻole ʻoe e hoʻōki i ka lawe ʻana i kāu lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a kāu kauka. Hiki i ka hana ʻana pēlā ke lilo i mea weliweli no ʻoe a me kāu pēpē i hānau ʻole ʻia. E hōʻemi kāu kauka i ka nui o kāu lāʻau lapaʻau e like me ka mea e pono ai, a i ʻole e hoʻololi iā ʻoe i kahi lāʻau lapaʻau ʻē aʻe. No laila, e hahai pono i nā ʻōlelo a kāu kauka. E nīnau inā he mea āu i maopopo ʻole ai.

Pehea ka maʻamau o kēia ʻano?

ʻOiai ma muli o ka helu helu, ma waena o 5% a me 11% o nā pēpē i hōʻike ʻia i ka lāʻau Phenytoin e loaʻa paha i ka Fetal Hydantoin Syndrome.

Eia nō naʻe, ʻaʻole kūpono ke hoʻokumu i nā hoʻoholo ma luna o kēia mau helu wale nō. Nānā pinepine nā kauka i ka hopena holoʻokoʻa o nā lāʻau anti-fit i ka wā hāpai. ʻO ia hoʻi, hopohopo nā kauka i nā hopena āpau o nā lāʻau anti-fit like ʻole - i ka wā e lawe ʻia ai a i ka wā e lawe pū ʻia ai - ma mua o ke ʻano maʻamau o kahi maʻi kikoʻī.

Eia kekahi laʻana, ʻo ka lawe ʻana i nā lāʻau lapaʻau he nui i ka manawa like hiki ke ʻoi aku ka pilikia ma mua o ka lawe ʻana i hoʻokahi wale nō. Eia kekahi, ʻoi aku ka nui o ka hopena o kekahi mau lāʻau lapaʻau (e like me nā huahana i loaʻa ka valproate) ma mua o nā mea ʻē aʻe.

Hiki i kāu kauka ke wehewehe pono iā ʻoe pehea e hoʻopilikia ai nā lāʻau lapaʻau āu e lawe nei i kou hāpai ʻana. E loiloi lākou i kou pilikia a aʻo aku iā ʻoe e like me ia.

He aha nā hōʻailona o ka maʻi fetal hydantoin?

ʻO kekahi o nā hōʻailona o ka Fetal Hydantoin Syndrome hiki ke ʻike ʻia i ka wā hānau:

• Ua hoʻokaʻawale ʻia nā maka ma kahi ʻē aʻe ma mua o ka maʻamau (i kapa ʻia ma ke ʻano lapaʻau he hypertelorism ).
• Nā maka keʻa (strabismus) .
• Lehelehe māwae a me/a i ʻole lehelehe māwae .
• ʻOi aku ka palahalaha a ʻoi aku paha ka laulā o ke alahaka o ka ihu ma mua o ka maʻamau.
• ʻOi aku ka liʻiliʻi ma mua o ka nui o ke poʻo maʻamau (microcephaly) .
• ʻAʻole ulu pono nā kui lima a me nā manamana wāwae a ua hewa paha.

I ka ulu ʻana o kāu pēpē, e ʻike paha ʻoe i nā hōʻailona o ka lohi o ka ulu ʻana . ʻO ka lohi o ka ulu ʻana ka wā e lohi ai kāu pēpē i ka hiki ʻana i kekahi mau pae holomua i hoʻohālikelike ʻia me nā pēpē ʻē aʻe o kona mau makahiki. Eia kekahi laʻana, e minoʻaka ana no ka manawa mua, e ʻōwili ana, a i ʻole e lawe ana i kāna mau ʻanuʻu mua.

Hiki paha iā ʻoe ke ʻike i nā hōʻailona o ke kīnā noʻonoʻo . ʻO ke kīnā noʻonoʻo kahi mea e hoʻopilikia ai i ke ʻano o kāu keiki e aʻo ai a launa pū me ke ao a puni lākou. No ka laʻana, ʻaʻole hiki i kāu keiki ke hoʻomaʻamaʻa i ka lua a hana paha i nā hana mālama ponoʻī i ka wikiwiki e like me kou makemake. A i ʻole, pilikia paha lākou i ka hoʻomaopopo ʻana i nā manaʻo e like me ke kālā a me ka hoʻokele manawa.

He aha ke kumu o kēia?

ʻO ke kumu nui o ka Fetal Hydantoin Syndrome ka hele ʻana o nā lāʻau lapaʻau i hāʻawi ʻia i ke keiki ma o ka placenta i ka wā hāpai.

ʻAʻole maopopo loa i nā kānaka noiʻi ke ʻano o kēia mau lāʻau lapaʻau e hoʻoulu ai i kēia mau mutations a me nā loli ʻē aʻe. Manaʻo lākou he kuleana ko nā kumu ʻē aʻe, e like me ka genetics . No ka laʻana, hiki i kekahi mau mutations i loko o nā genes ke hoʻopilikia i ke ʻano o ka wāwahi ʻana o kou kino i nā lāʻau lapaʻau. ʻO ia kekahi kumu e hiki ai i nā lāʻau lapaʻau ke hoʻopilikia iā ʻoe i ka wā hāpai.

Ke manaʻolana ʻia nei e hōʻike nā noiʻi e hiki mai ana i ka ʻike hou aku e pili ana i ke ʻano o ka ulu ʻana o kēia maʻi a me ka mea i pilikia nui ʻia.

Pehea e ʻike ai nā kauka i kēia maʻi?

Hoʻomaopopo nā kauka i ka Fetal Hydantoin Syndrome i ka wā hānau a i ʻole i ka wā kamaliʻi ke hōʻike ka pēpē i nā hōʻailona maʻamau o ke ʻano. Kōkua pū ka mōʻaukala olakino o ka makuahine (me nā lāʻau lapaʻau) i ka hana ʻana i ka hōʻailona. ʻAʻohe hoʻāʻo diagnostic kikoʻī no ka Fetal Hydantoin Syndrome.

Pēlā nō, ʻaʻohe hoʻāʻo kikoʻī e hōʻoia i ke alo o ka Fetal Hydantoin Syndrome i ka wā prenatal. Eia nō naʻe, hiki i nā kauka ke kānalua i ka syndrome ma muli o kekahi mau kīnā hānau i ʻike ʻia i ka wā o nā hoʻokolohua e like me nā scan.

He aha nā lāʻau lapaʻau?

E mālama nā kauka i kāu pēpē ma muli o kāna mau hōʻailona a me nā pono kikoʻī. Hiki ke loli kēia mau lāʻau lapaʻau i ka wā e ulu ai kāu pēpē. ʻO kekahi o nā lāʻau lapaʻau e hoʻohana ʻia:

• ʻOki kino: Eia kekahi laʻana, ʻoki kino e hoʻoponopono ai i ka lehelehe māwae a me ka lehelehe.
• Nā lāʻau lapaʻau.
• Hoʻōla kino.
• Hoʻōla hana.

Pono paha kāu keiki i ke kōkua hou aku me ke aʻo ʻana. E hana pū ana ke kime lapaʻau o kāu keiki me ʻoe e hana i kahi Hoʻolālā Lawelawe ʻOhana Pilikino (IFSP) . He palapala kēia i hoʻopilikino ʻia no nā pono o kāu keiki. Hoʻolālā ia i nā lawelawe e pono ai kāu keiki, e like me ke ʻenehana kōkua a me ka hoʻōla ʻōlelo .

ʻO nā kauka a me nā mea hoʻoponopono e hana pū ana e mālama i kāu keiki e komo pū me:

• Nā kauka keiki.
• Nā kauka ʻokiʻoki.
• Nā kauka ʻokiʻoki maxillofacial.
• Nā loea noʻonoʻo keiki.
• Nā kauka neurologist o nā keiki.
• Nā mea hoʻōla hana.
• Nā mea lapaʻau ʻōlelo.

He aha kaʻu e manaʻo ai inā loaʻa kēia maʻi i kaʻu pēpē?

E haʻi aku ke kime lapaʻau o kāu pēpē iā ʻoe i ka mea e manaʻo ai ma muli o nā hōʻailona o kāu pēpē. Pono paha kāu pēpē i kekahi mau ʻoki kino i ka wā ʻōpiopio o ke ola, a me kekahi mau lawelawe, e like me ke kōkua me ke aʻo ʻana, i kona wā ʻelemakule.

Mai hopohopo no nā mea āpau i ka manawa hoʻokahi. E hana i hoʻokahi ʻanuʻu i ka manawa. Inā ʻoe e manaʻo nei i ka nui o ke kaumaha a i ʻole ka haunaele, e ʻike i kahi mea lapaʻau . Hiki iā lākou ke kamaʻilio e pili ana i kou mau manaʻo a kōkua iā ʻoe e ʻimi i nā ala olakino e hoʻokele ai i kou kaumaha.

Hiki ke pale ʻia ka Fetal Hydantoin Syndrome?

I kekahi manawa, ʻoiai inā he mea nui ka lāʻau lapaʻau i kou olakino, ʻaʻole hiki ke pale aku i ka lāʻau lapaʻau mai ka hōʻeha ʻana i kāu pēpē i hānau ʻole ʻia. Eia nō naʻe, hiki i kāu kauka ke hana pū me ʻoe e kōkua i ka hōʻemi ʻana i ka pilikia o ka fetal hydantoin syndrome. Eia kekahi laʻana, hiki paha iā lākou ke:

• Ke hoʻololi nei i kāu mau lāʻau lapaʻau ma mua a i ka wā hāpai. Hiki paha i kēia ke hoʻemi i ka nui o nā lāʻau lapaʻau āu e lawe ai i kēlā me kēia lā. A i ʻole, ke hoʻololi ʻana i nā lāʻau lapaʻau ʻē aʻe i emi iki ka hōʻeha ʻana i ka ʻōpū.
• E aʻo i nā wāhine e lawe i nā mea hoʻopihapiha folic acid ma mua a i ka wā hāpai e kōkua i ka pale ʻana i nā kīnā hānau.

E nānā pono kāu kauka iā ʻoe i kou wā hāpai a hana i nā hoʻololi e pono ai i kāu mau lāʻau lapaʻau. No laila, e mālama pono i kāu mau manawa i hoʻonohonoho ʻia a e kaʻana like i nā nīnau a hopohopo paha āu e loaʻa ai me kāu kauka.

Āhea ʻoe e ʻimi ai i ke aʻo lapaʻau?

Inā ʻoe e lawe ana i ka lāʻau lapaʻau e kōkua iā ʻoe e noho olakino a hiki iā ʻoe ke hāpai, a i ʻole ke hoʻolālā nei e hāpai, e kamaʻilio me kāu kauka. E nānā lākou i kāu mau lāʻau lapaʻau a hoʻoholo inā pono e hana i kekahi mau hoʻololi.

Inā ua hāpai mua ʻoe a ke lawe nei i ka lāʻau lapaʻau no ka maʻi ʻōpū, e hahai pono i ka papa manawa o kāu kauka. He mea nui loa kēia mau manawa no ka mea ʻo ia ka manawa e hiki ai i kāu kauka ke nānā i kou hāpai ʻana a hoʻoponopono i kāu lāʻau lapaʻau e like me ka mea e pono ai. E hana lākou i nā mea āpau e hiki ai iā lākou ke kōkua iā ʻoe e pale aku i ka maʻi ʻōpū me ka hoʻēmi ʻana i kekahi pōʻino i kāu pēpē.

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

ʻO kekahi mau nīnau āu e makemake ai e nīnau ma mua o kou hāpai ʻana:

• He palekana anei iaʻu ke hāpai?
• He aha nā hoʻololi e pono ai iaʻu e hana i kaʻu mau lāʻau lapaʻau?
• He aha ka manawa e hoʻopilikia ai kaʻu lāʻau lapaʻau i ka ulu ʻana o ka ʻōpū?
• Āhea wau e hele hou mai ai e ʻike iā ʻoe?

Nā nīnau e nīnau ai inā ua ʻike ʻia kāu pēpē me ka Fetal Hydantoin Syndrome:

• Pehea e pili ai kēia maʻi i kaʻu pēpē?
• He aha nā lāʻau lapaʻau āu e ʻōlelo nei, a i ka manawa hea lākou e hoʻomaka ai?
• Pehea lā wau e mālama ai i kaʻu pēpē ma ka home?
• Pehea e pili ai kēia kūlana i ka ulu ʻana o kaʻu keiki a i ʻole ka hiki ke noʻonoʻo?
• He aha kaʻu e manaʻo ai i ka wā e ulu ana kaʻu keiki?

He manawa ʻike ʻole ʻia ka hāpai ʻana. Eia kekahi, inā he maʻi kou e pono ai ʻoe e lawe i ka lāʻau lapaʻau, e noʻonoʻo paha ʻoe pehea e pili ai kēlā lāʻau lapaʻau i kāu pēpē. ʻO ka lawe ʻana i ka lāʻau lapaʻau i kuhikuhi ʻia no ka maʻi i ka wā hāpai hiki ke hana i ka fetal hydantoin syndrome a i ʻole nā ​​​​hopena ʻē aʻe i makemake ʻole ʻia. Eia naʻe,ʻAʻole paha e hoʻopilikia ka lāʻau lapaʻau i kou hāpai ʻana - ʻo ia ke kūlana i manaʻo nui ʻia. Hiki i kāu kauka ke haʻi hou aku iā ʻoe e pili ana i ka mea e manaʻo ai a kākoʻo iā ʻoe i kēlā me kēia ʻanuʻu o ke ala.

Leka Lawe-Home

ʻO ka Fetal Hydantoin Syndrome, a mākou i kamaʻilio ai i kēia lā, he ʻano ia e hiki ke loaʻa i nā pēpē ma muli o nā lāʻau hoʻopaʻi e like me Phenytoin a ka makuahine e lawe ai i ka wā hāpai. ʻAʻole kēia e hana i nā kānaka a pau , akā aia kahi pilikia.

ʻO ka mea nui loa, ʻo ia ke kamaʻilio me kāu kauka inā ʻoe e lawe ana i ka lāʻau lapaʻau no ke olakino a ke noʻonoʻo nei e hāpai, a i ʻole ua hāpai mua. Mai hoʻōki i ka lawe ʻana i kāu lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a kāu kauka. E kōkua kāu kauka iā ʻoe e hoʻokele i kāu lāʻau lapaʻau ma ke ala palekana loa no ʻoe a me kāu pēpē.

Inā loaʻa kēia maʻi i kāu pēpē, mai hopohopo, e ʻimi i ke aʻo lapaʻau a loaʻa i ka lāʻau lapaʻau a me ke kākoʻo e pono ai. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi, aia nā kauka, nā mea hoʻōla, a me nā ʻohana e kōkua iā ʻoe.

ʻO ka maʻi fetal hydantoin, nā lāʻau lapaʻau i ka wā hāpai, phenytoin, epilepsy a me ka hāpai ʻana, nā kīnā hānau, lohi o ka ulu ʻana, Dilantin