Di gladi at we yu kin gɛt we yu luk yu pikin we yu jɔs bɔn, nɔ go ebul fɔ ɛksplen, nɔto so? Bɔt afta dat, we yu yɛri bɔt sɔm pan di tɛst dɛn we dɛn kin du na ɔspitul afta dɛn bɔn di pikin, yu kin fred smɔl ɛn yu kin want fɔ no mɔ. Wan pan dɛn kayn tɛst dɛn de na di PKU tɛst. Sɔntɛm yu nɔ yɛri bɔt dis nem. Bɔt dis na tɛst we rili impɔtant. Tide wi de tɔk bɔt dis kayn sik we nɔ kin apin so ɔltɛm we dɛn kɔl PKU, bɔt if dɛn no am kwik, dɛn kin kɔntrol am ɔltogɛda ɛn di pikin kin liv fayn layf.
Fɔ tɔk am simpul wan, wetin na PKU (Phenylketonuria)?
PKU, ɔ Phenylketonuria, na wan sik we nɔ kin apin so ɔltɛm . Na mama ɛn papa dɛn gɛt am. di pikin we gεt dis kכndyushכn nכ kin ebul fכ digεst fayn fayn wan, כ brok dכn, di amino asid fεnylalanin, we de insay di protin it dεm we wi de it.
Tink bɔt wi bɔdi lɛk big faktri. Di it we wi de it na di raw matirial we wi de put insay. Dɛn raw matirial ya na smɔl wokman dɛn we dɛn kɔl ɛnzaym de yuz fɔ mek di tin dɛn we wi bɔdi nid. di pikin we gεt PKU nכ de prodyuz wan spεshal εnzym we dεn kכl fεnylalanin haydroksilayz (PAH), we de brok dכn fεnylalanin.
So wetin kin apin? Fɛnilalanin we dɛn kin gɛt frɔm in mama in milk ɛn leta frɔm it dɛn we di pikin de it, kin bigin fɔ gɛda na di blɔd instead fɔ kɔmɔt na di bɔdi. we di fεnylalanin we kin gɛda dis kayn we de bɔku, i kin bi pɔyzin to di pikin in bren . If dɛn nɔ trit dis, dis kin pwɛl di bren ɛn mek siriɔs prɔblɛm dɛn lɛk intɛlektual disabiliti ɛn divɛlɔpmɛnt delay.
Bɔt di bɛst tin ya na dat na bɔku kɔntri dɛn, inklud Sri Lanka, ɔspitul dɛn kin du dis PKU tɛst pan ɛvri pikin we dɛn bɔn. So, dɛn kin no di sik kwik kwik wan. Bikɔs dɛn kin bigin fɔ trit am jɔs afta dɛn no am, di pikin kin gɛt di chans fɔ divɛlɔp nɔmal ɛn wɛl, we kin mek i nɔ gɛt siriɔs sik dɛn.
Wetin na di sayn dɛm fɔ PKU?
Bebi we gɛt PKU kin luk kɔmplit wɛlbɔdi we dɛn bɔn am. So, fɔs, sɔntɛm no chenj nɔ go de we pɔsin go notis. If dɛn nɔ trit am, di sayn dɛn go bigin fɔ sho bitwin tri ɛn siks mɔnt. Insay dis tɛm, yu kin notis se yu pikin kin delay smɔl.
Bay di tεm we di pikin ol lεk wan ia, if dεn nכ trit am, dεn sayn dεm ya kin sho.
| Di sayn we de sho se di sik de | Tɔk bɔt |
|---|---|
| Wan strenj smel | Wan strenj, mɔsti smel we de kɔmɔt na di pikin in briz, in swet, ɔ in urine. |
| Di kɔlɔ kin chenj | Di pikin in skin, in ia, ɛn in yay gɛt layt kɔlɔ we yu kɔmpia am to di ɔda pipul dɛn na di famili. |
| Sik dɛn we kin apin na di skin | Skin sik dɛm lɛk ɛkzema. |
| Di we aw pɔsin nɔ de gro fayn | di wet εn ayt we nכ de inkrεs in prכpכshכn to di ej (Growth delay). |
| Ɔda tin dɛn we de apin | Di sayn dɛm lɛk fɔ vɔmit, nɔs, ɛn fɔ shek. |
| Siriɔs sayn dɛm wae kin apun if dɛn nɔr trit am | |
| Prɔblɛm dɛn we gɛt fɔ du wit di we aw pɔsin de biev | Fɔ de fidget bɔku tɛm, fɔ biev we nɔ de tek tɛm, ɛn fɔ tray fɔ du bad to dɛnsɛf. |
| Di we aw pɔsin kin du tin pasmak | Fɔ bi tu aktif fɔ de na wan ples. |
| Di sik dɛn we kin mek pɔsin sik | Kɔndishɔn dɛn we tan lɛk seizure . |
Aw bɛlɛ kin afɛkt mama we gɛt PKU?
Dis na pɔynt we rili impɔtant. If uman we gɛt PKU gɛt bɛlɛ ɛn dɛn nɔ kɔntrol in PKU kɔndishɔn da tɛm de, i kin afɛkt di pikin we de na di bɛlɛ. di inkris lεvεl fכ fεnylalanin na di mama in bכdi kin ambɔg di pikin.
Dis kin mek di pikin we nɔ gɛt bɛlɛ kin gɛt difrɛn prɔblɛm dɛn bak.
- Hat sik we dɛn bɔn wit
- Sɔm chenj dɛn na di fes shep
- Di wet we dɛn bɔn we dɛn bɔn smɔl
- Smɔl ed (maykrosɛfali) .
Bɔt nɔ fred. If yu gɛt PKU, tɔk to yu dɔktɔ ɛn fala spɛshal it ɔl di tɛm we yu gɛt bɛlɛ, yusɛf kin gɛt pikin we gɛt wɛlbɔdi ɔlsay .
Wetin mek PKU kin divɛlɔp? Wetin na di kɔz?
As wi bin dɔn tɔk, PKU na sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. i de kכz fכ wan mכtεshכn insay wan jin we dεn kכl `PAH` insay wi bכdi. dis `PAH` jin de instrכkt wi bכdi fכ mek di εnzym we de brok dכn fεnylalanin. We chenj de na di jin, da ɛnzaym de nɔ de mek, ɔ wan prɔblɛm de we i de mek.
dis sik de inhεrit insay wan כtosom rεsεsiv patεn. Fɔ tɔk am simpul wan, i de go lɛk dis:
Fɔ mek pikin gɛt di sik, dɛn fɔ gɛt wan kɔpi fɔ di jin we dɛn dɔn chenj frɔm dɛn mama ɛn papa . If na wan mama ɔ papa nɔmɔ dɛn gɛt di jin, di pikin nɔ go gɛt di sik. Bɔt, da mama ɔ papa de kin bi pɔsin we de kɛr am go. Dis min se dɛn nɔ kin gɛt di sik, bɔt dɛn kin pas di jin to dɛn pikin dɛn tumara bambay.
Aw dɔktɔ dɛn kin no se pɔsin gɛt PKU?
Fɔ no PKU dɔn izi naw bikɔs dɛn de chɛk di nyu bɔn pikin dɛn.
Bitwin 24 ɛn 72 awa afta dɛn bɔn yu pikin, dɔktɔ ɔ nɔs na di ɔspitul go chuk yu pikin in il wit smɔl nidul ɛn gɛda sɔm drop blɔd pan spɛshal kad. Dɛn kɔl dis ‘tɛst fɔ prik il.’ dis bכdi sεmpl dεn kin yuz fכ chεk di lεvεl fכ fεnylalanin na yu pikin in bכdi.
If di blɔd lɛvɛl fɔ phenylalanine bɔku, dɛn kin du ɔda blɔd ɛn urine tɛst fɔ kɔnfirm di diagnosis. Sɔntɛnde, dɛn kin du wan jenɛtik tɛst fɔ no di patikyula jɛnɛtik chenj we de mek di sik.
Wetin na di tritmɛnt dɛm fɔ PKU?
No mɛrɛsin nɔ de fɔ PKU. Bɔt dɛn kin ebul fɔ kɔntrol di sik fayn fayn wan ɔlsay na dɛn layf . Di sayn dɛm kin kam bak if dɛn stɔp di tritmɛnt. Di men tritmɛnt na spɛshal it ɛn sɔntɛnde mɛrɛsin.
1. Na spɛshal it we nɔ gɛt bɔku fenilalanin
Dis na di impɔtant ɛn men pat pan PKU manejmɛnt.Pɔsin we gɛt PKU fɔ fala it we nɔ gɛt bɔku phenylalanine fɔ di res ɔf in layf.
Bikɔs phenylalanin na pat pan di prɔtin, di it dɛn we gɛt bɔku prɔtin nid fɔ gɛt smɔl it .
- Mit, fish, chukchuk
- Eg dɛn
- Milk ɛn tin dɛn we dɛn mek wit milk (yogɔt, chiz) .
- Grens lɛk lentil ɛn chikip
- Soya prodakt dɛn
- Nat dɛn
Bɔt bikɔs di bɔdi nid sɔm prɔtin fɔ mek i gro, yu fɔ tɔk to pɔsin we sabi bɔt it fɔ no ɔmɔs prɔtin yu go it. Dɛn go mek wan it plan we gɛt fayn fayn it dɛn we fit di pikin/pɔsin we gɛt PKU.
I rili impɔtant: Dɛn fɔ avɔyd di atifishal switin ‘aspartame’ ɔltogɛda. Aspartame de brok dכn insay di bכdi fכ mek fεnylalanin. Bɔku drink, it, chɛwing gam, sɔm vaytamɛn, ɛn kɔf srɔp we dɛn rayt ‘diet’ ɔ ‘sugar-free’ kin gɛt am. So, i rili impɔtant fɔ tek tɛm rid di lɛbl bifo yu it ɔ drink ɛnitin.
di nyu bכbi dεm we gεt PKU fכ stat pan spεshal fכmula we nכ gεt fεnylalanin wantεm wantεm.
2. Di mɛrɛsin dɛn we dɛn kin yuz
Fɔ sɔm PKU pasɛnt dɛn, mɛrɛsin kin ɛp apat frɔm it. Dɛn fɔ jɔs yuz dɛn tin ya if dɔktɔ tɛl yu fɔ du am.
- Sapropterin dihydrochloride (Kuvan®): Dis mɛrɛsin de ɛp sɔm sik pipul dɛn fɔ brok di phenylalanine na dɛn bɔdi. Bɔt yu fɔ kɔntinyu fɔ fala di it we yu de it we yu de tek dis mɛrɛsin.
- Pegvaliase (Palynziq®): Dis na vaysin we dɛn kin kɔmɛnt fɔ big pipul dɛn we sik. i de gi di bכdi wan εnzym we de brok dכn fεnylalanin.
I pɔsibul fɔ liv nɔmal layf wit PKU?
Yɛs, i rili bi! Pan ɔl we PKU na sik we pɔsin kin gɛt fɔ ɔl in layf, if dɛn no am kwik ɛn dɛn kin manej am fayn, i kin mek i nɔ gɛt bɛtɛ impak pan wɛlbɔdi biznɛs.
Fɔ fala di it we nɔ gɛt bɔku prɔtin fɔ di res ɔf yu layf kin tranga sɔntɛnde. Bɔt nɔto yu wangren de. Yu dɔktɔ ɛn pɔsin we sabi bɔt it kin ɛp yu ɔltɛm. Dɔn bak, fɔ jɔyn sɔpɔt grup wit ɔda pipul dɛn we gɛt PKU kin ɛp yu fɔ sheb ɛkspiriɛns ɛn gɛt trɛnk.
Yu go dɔn si sɔm 'diet' drink bɔtul ɛn chewing gum paket wit wɔnin we se "Phenylketonurics: Contains phenylalanine." Dis na fɔ mek pipul dɛn we gɛt PKU no se di prɔdak gɛt aspartame, we gɛt phenylalanine.
If yu ɔ yu famili de fil strɛs bɔt yu PKU kɔndishɔn, nɔ shek fɔ tɔk to pɔsin we de advays yu bɔt yu maynd . Mental wɛlbɔdi impɔtant jɔs lɛk aw bɔdi wɛlbɔdi impɔtant.
Mɛsej we dɛn kin kɛr go na os
- PKU na wan jenɛtik sik we dɛn kin trit ɛn we dɛn kin kɔntrol. Nɔ fred am we yu nɔ nid fɔ fred.
- Fɔ no di sik kwik kwik wan tru di nyu bɔbɔ we dɛn de chɛk na di men tin fɔ mek dɛn gɛt di tritmɛnt fayn fayn wan.
- Di men tritmɛnt na fɔ fala spɛshal it we nɔ gɛt bɔku phenylalanine fɔ yu layf.
- We yu de bay it ɛn drink we dɛn rayt ‘Diet’ ɔ ‘Sugar-free’, chɛk ɔltɛm fɔ si if dɛn gɛt aspartame.
- Fɔ fala di instrɔkshɔn dɛn we yu dɔktɔ ɛn pɔsin we sabi bɔt it gi yu di rayt we. Stay in kɔntakt wit dɛn ɔltɛm.
- If dɛn manej am fayn, pikin ɔ pɔsin we gɛt PKU kin liv kɔmplit wɛlbɔdi, nɔmal, ɛn gladi layf.
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