Kuwunika kwa Phenylketonuria (PKU)

Zamkati

• Kodi kuyesa kuyesa kwa PKU ndi chiyani?
• Amagwiritsidwa ntchito yanji?
• Chifukwa chiyani mwana wanga amafunika kuyesa kuyezetsa PKU?
• Kodi chimachitika ndi chiani poyesedwa kwa PKU?
• Kodi ndiyenera kuchita chilichonse kuti ndikonzekeretse mwana wanga mayeso?
• Kodi pali zoopsa zilizonse pamayeso?
• Kodi zotsatirazi zikutanthauza chiyani?
• Kodi pali china chilichonse chomwe ndiyenera kudziwa pamayeso owunika a PKU?
• Zolemba

Kodi kuyesa kuyesa kwa PKU ndi chiyani?

Kuyezetsa magazi kwa PKU ndi kuyezetsa magazi kwa ana akhanda patadutsa maola 24-72 atabadwa. PKU imayimira phenylketonuria, matenda osowa omwe amalepheretsa thupi kuwononga bwino chinthu chotchedwa phenylalanine (Phe). Phe ndi gawo la mapuloteni omwe amapezeka muzakudya zambiri komanso chotsekemera chotchedwa aspartame.

Ngati muli ndi PKU ndipo mumadya zakudya izi, Phe amalowa m'magazi. Miyezo yambiri ya Phe imatha kuwononga dongosolo lamanjenje komanso ubongo, kuyambitsa mavuto osiyanasiyana azaumoyo. Izi zikuphatikizapo kugwidwa, mavuto amisala, komanso kupunduka kwambiri kwamaganizidwe.

PKU imayambitsidwa ndi kusintha kwa majini, kusintha kwa magwiridwe antchito a jini. Chibadwa ndiye gawo lobadwa kuchokera kwa amayi ndi abambo ako. Kuti mwana atenge vutoli, mayi ndi bambo ake ayenera kupatsira jini ya PKU yosinthika.

Ngakhale PKU ndiyosowa, ana onse obadwa kumene ku United States amafunika kukayezetsa PKU.

• Kuyesaku ndikosavuta, popanda chiopsezo chathanzi lililonse. Koma imatha kupulumutsa mwana kuvulala kwa ubongo kwa moyo wonse komanso / kapena mavuto ena azaumoyo.
• PKU ikapezeka msanga, kutsatira zakudya zapadera, zomanga thupi / zotsika-Phe zitha kuteteza zovuta.
• Pali njira zopangidwa mwapadera za makanda omwe ali ndi PKU.
• Anthu omwe ali ndi PKU amafunika kukhala ndi chakudya chambiri cha protein / low-Phe moyo wawo wonse.

Mayina ena: Kuwunika kumene kubadwa kwa PKU, kuyesa kwa PKU

Amagwiritsidwa ntchito yanji?

Kuyesedwa kwa PKU kumagwiritsidwa ntchito kuti muwone ngati mwana wakhanda ali ndi milingo yambiri ya Phe m'magazi. Izi zikhoza kutanthauza kuti mwanayo ali ndi PKU, ndipo mayesero ena adzalamulidwa kuti atsimikizire kapena kuchotsa matenda.

Chifukwa chiyani mwana wanga amafunika kuyesa kuyezetsa PKU?

Akhanda ku United States akuyenera kukayezetsa PKU. Kuyesedwa kwa PKU nthawi zambiri kumakhala gawo la mayeso angapo omwe amatchedwa kuwunika kumene wakhanda. Makanda achikulire ena ndi ana angafunike kuyesedwa ngati atatengedwa kuchokera kudziko lina, ndipo / kapena ngati ali ndi zizindikilo za PKU, zomwe zimaphatikizapo:

• Kukula kwakuchedwa
• Zovuta zamavuto
• Fungo labwino mu mpweya, khungu, ndi / kapena mkodzo
• Mutu wawung'ono kwambiri (microcephaly)

Kodi chimachitika ndi chiani poyesedwa kwa PKU?

Wopereka chithandizo chazaumoyo azitsuka chidendene cha mwana wanu ndi mowa ndikumutengera chidendene ndi singano yaying'ono. Woperekayo amatolera magazi pang'ono ndikuyika bandeji pamalowo.

Kuyesaku sikuyenera kuchitika pasanathe maola 24 kuchokera pomwe mwana wabadwa, kuti mwana athe kumwa zomanga thupi, mwina kuchokera mkaka wa m'mawere kapena mkaka wa mkaka. Izi zithandizira kuti zotsatira zake zikhale zolondola. Koma kuyezetsa kuyenera kuchitika pakati pa maola 24-72 atabadwa kuti athetse zovuta za PKU. Ngati mwana wanu sanabadwire kuchipatala kapena ngati munatuluka kuchipatala msanga, onetsetsani kuti mwalankhula ndi omwe amakuthandizani kuti akonze mayeso a PKU posachedwa.

Kodi ndiyenera kuchita chilichonse kuti ndikonzekeretse mwana wanga mayeso?

Palibe zokonzekera zapadera zofunika kuyesedwa kwa PKU.

Kodi pali zoopsa zilizonse pamayeso?

Pali chiopsezo chochepa kwambiri kwa mwana wanu poyesa ndodo ya singano. Mwana wanu amatha kumverera pang'ono pamene chidendene chimakokedwa, ndipo mikwingwirima ingapangidwe pamalowo. Izi zikuyenera kuchoka mwachangu.

Kodi zotsatirazi zikutanthauza chiyani?

Ngati zotsatira za mwana wanu sizinali zachilendo, wothandizira zaumoyo wanu adzaitanitsa mayesero ena kuti atsimikizire kapena kuthana ndi PKU. Mayesowa atha kuphatikizanso kuyesa magazi komanso / kapena mkodzo. Inunso ndi mwana wanu mungapezenso mayeso obadwa nawo, chifukwa PKU ndi cholowa chobadwa nacho.

Ngati zotsatirazo zinali zachilendo, koma mayeso adachitika posachedwa kuposa maola 24 atabadwa, mwana wanu angafunike kuyesedwanso pakadutsa milungu iwiri kapena iwiri.

Dziwani zambiri zamayeso a labotale, magawo owerengera, ndi zotsatira zakumvetsetsa.

Kodi pali china chilichonse chomwe ndiyenera kudziwa pamayeso owunika a PKU?

Ngati mwana wanu anapezeka ndi PKU, amatha kumwa chilinganizo chomwe mulibe Phe. Ngati mukufuna kuyamwitsa, lankhulani ndi omwe amakuthandizani. Mkaka wa m'mawere uli ndi Phe, koma mwana wanu atha kukhala ndi zochepa, zowonjezeredwa ndi njira yopanda Phe. Mosasamala kanthu, mwana wanu adzafunika kukhala ndi chakudya chama protein ochepa kwambiri pamoyo wake. Chakudya cha PKU nthawi zambiri chimatanthauza kupewa zakudya zamapuloteni monga nyama, nsomba, mazira, mkaka, mtedza, ndi nyemba. M'malo mwake, chakudyacho chingaphatikizepo chimanga, sitashi, zipatso, choloweza m'malo mwa mkaka, ndi zinthu zina zochepa kapena zopanda Phe.

Wothandizira zaumoyo wa mwana wanu angakulimbikitseni katswiri m'modzi kapena angapo ndi zinthu zina zokuthandizani kusamalira zakudya za mwana wanu komanso kuti mwana wanu akhale wathanzi. Palinso zinthu zosiyanasiyana zomwe achinyamata ndi achikulire omwe ali ndi PKU. Ngati muli ndi PKU, lankhulani ndi omwe amakuthandizani azaumoyo za njira zabwino zosamalirira zakudya zanu komanso zosowa zanu.

Zolemba

1. American Pregnancy Association [Intaneti]. Irving (TX): Mgwirizano wa Amayi Achimereka; c2018. Phenylketonuria (PKU); [yasinthidwa 2017 Aug 5; yatchulidwa 2018 Jul 18]; [pafupifupi zowonetsera 3]. Ipezeka kuchokera: http://americanpregnancy.org/birth-defects/phenylketonuria-pku
2. PKU Network ya ana [Internet]. Encinitas (CA): PKU Network ya Ana; Nkhani ya PKU; [adatchula 2018 Jul 18]; [pafupifupi zowonetsera 2]. Ipezeka kuchokera: http://www.pkunetwork.org/Childrens_PKU_Network/What_is_PKU.html
3. Marichi wa Dimes [Intaneti]. Zigwa Zoyera (NY): March wa Dimes; c2018. PKU (Phenylketonuria) mwa Mwana Wanu; [adatchula 2018 Jul 18]; [pafupifupi zowonetsera 3]. Ipezeka kuchokera: https://www.marchofdimes.org/complications/phenylketonuria-in-your-baby.aspx
4. Chipatala cha Mayo [Intaneti]. Mayo Foundation for Medical Education and Research; c1998–2018. Phenylketonuria (PKU): Kuzindikira ndi chithandizo; 2018 Jan 27 [yatchulidwa 2018 Jul 18]; [pafupifupi zowonetsera 4]. Ipezeka kuchokera: https://www.mayoclinic.org/diseases-conditions/phenylketonuria/diagnosis-treatment/drc-20376308
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Zomwe zili patsamba lino siziyenera kugwiritsidwa ntchito m'malo mwa chithandizo chamankhwala kapena upangiri. Lumikizanani ndi othandizira azaumoyo ngati muli ndi mafunso okhudzana ndi thanzi lanu.