Yu smɔl pikin gɛt big big rɛd spat dɛn na in bɔdi? Lɛ wi lan bɔt PHACE Syndrome.

Mama ɛn papa, yu kin wɔri ɛn fred we yu si big big rɛd spat ɔ smɔl bɔmp na yu smɔl pikin in bɔdi, sɔntɛnde na in fes ɛn nɛk. Sɔmtɛm dɛn tin ya na jɔs tin dɛm wae go wɛl, bɔt nɔr kin bɔrku, dɛn kin bi sayn fɔ wan sik wae nɔr kin bɔrku ɛn sɔm kayn kɔmpleks sik lɛk PHACE Syndrome . So, witout further ado, lɛ wi tɔk ditayli bɔt wetin na PHACE Syndrome, wetin i kin kɔz, ɛn wetin wi fɔ du if na sɔntin lɛk dat.

Wetin na PHACE Syndrome?

Okay, fɔs lɛ wi si wetin na PHACE syndrome. Fɔ tɔk am simpul wan, na tin we nɔ kin apin so ɔltɛm. Dat min se i nɔ kin apin to ɔlman. Na wan sik we dɛn bɔn wit we de apin we dɛn bɔn am. Dat min se i kin apin we di pikin stil de na di bɛlɛ. Dis kכndyushכn kin afekt difrεn pat dεm na di pikin in bכdi. I kin mɔna di skin, di bren, di at, di men at dɛn, ɛn di yay dɛn .

Bɔku tɛm, na wan wan tin dɛn nɔmɔ kin apin we nɔ fayn na ɛni wan pan dɛn say dɛn ya. Sɔm pikin dɛn kin jɔs sho sɔm pan di sayn dɛn we de dɔŋ ya. di tin dεm we dεn kin si pan pikin dεm we gεt PHACE sεndrכm na hεmangiomas , sεribra vaskul dεfεkt, εn at dεfεkt . Dɛn kin notis dɛn tin ya we uman gɛt bɛlɛ, we dɛn bɔn pikin, ɔ we dɛn smɔl.

PHACE na rili akɔdin fɔ sɔm difrɛn dizayd dɛn. i de dεskrεb di mεjכr divεlכpmεnt abnכmaliti dεm we de asai wit dis sεndrכm. Sɔntɛnde dɛn kin kɔl am PHACES syndrome. Di ekstra ‘S’ tinap fɔ sternal clefting . dis min se di bon we de na di midul pan di chεst, we na di stεnכm, nכ fכm fayn, כ sכm defεkt de insay.

Wetin na di sayn dɛm fɔ PHACE syndrome?

So, wetin na di sayn dɛm fɔ pikin we gɛt PHACE syndrome? Dis kin difrɛn frɔm wan pikin to ɔda pikin. Sɔm pikin dɛn nɔ kin gɛt bɛtɛ sayn, sɔm kin gɛt mɔ. Ɛn aw di sik kin tranga kin difrɛn bak frɔm wan pikin to ɔda wan. Lɛ wi si wetin na di men sayn dɛm:

• Ɛmanjiɔm: Dɛn tin ya na tin dɛn we pɔsin kin si ɛn we kin chenj in kɔlɔ na di skin. Dɛn kin rili fɔm bay we di ɛkstra blɔd vesel dɛn de gro . Dɛn kin si dɛn mɔ na di skel, fes, nɛk, bɔdi, ɛn an. Bɔku tɛm, dɛn kin rili big ɛn dɛn kin skata. כltu, sכmtεm dεn hεmangiomas ya kin afekt di intanεt כgan dεm na di pikin bak. If dis apin, prɔblɛm kin apin wit di we aw pɔsin de si ɛn yɛri.

• Di tin dɛn we nɔ kin apin na di bren:di posita fכs na di εria na di bren we de kכntro di imכtant wok dεm lεk fכ bεlε, kכdכnayshכn, εn fכ brith. If sɔntin nɔ de apin na dis eria, di pikin kin muv we i nɔ want ɛn i kin gɛt prɔblɛm wit in maynd . I kin chenj bak pan di we aw di bren insɛf de mek.

• At abnɔmal tin dɛm: Sɔm at pwɛl hat kin mek yu gɛt sɔm sayn dɛm lɛk wae yu nɔr de blo fayn , yu mɔsul dɛn kin wik , yu blɔd prɛshɔn , yu kin wɔri ɔltɛm, ɛn yu kin swet. sכmtεm, di pikin in at nכ de divεlכp ful wan, εn i kin bi se wan ol de bitwin di chεmba dεm na di at (ventricular septal defect) . כ, i kin bi se di aorta kin sכmtεm (coarctation of the aorta).

• Di at we nɔ de wok fayn: If di at we de kɛr blɔd go na di bren ɛn nɛk smɔl ɔ gɛt ɔda tin dɛn we nɔ fayn, di bren nɔ go gɛt inof blɔd. Dis kin mek yu gɛt denja tin lɛk aneurism , seizure , strok , ɔr nɔr de fil fayn na wan say na di bɔdi.

• di yay abnכmaliti: I kin bi se di pikin in yay, optik nerv, כ blכd vesel dεm na di yay nכ de divεlכp fayn. Dis kin mek yu nɔ ebul fɔ si fayn, yu nɔ kin si fayn , yu yay nɔ kin smɔl , yu nɔ kin kɔntrol yu yay, ɔ yu yay kin drɔp .

• di brεstbon abnכmaliti: As wi bin dכn tכk, di brεstbon (sternum) we de na di midul pan di pikin in chεst kin mis כ i nכ kin divεlכp fayn. Dis kin mek krak krak, bɔmp, ɛn pit dɛn de na da say de.

Posisibul kɔmplikeshɔn dɛm fɔ PHACE sindrom

Pikin dεm we gεt PHACE sεndrכm kin gεt sכm kכmplikεshכn dεm bikoz fכ dεn abnכmaliti dεm ya na dεn bכdi strכkchכ εn blכd vεsεl dεm. Na dis na wetin dɛn bi:

• Balans ishu dɛn
• Prɔblɛm wit dɛn tit, fɔ ɛgzampul , di ɛnamel haypoplasia ɛn di tut rut we nɔ de wok fayn.
• I nɔ izi fɔ swɛla
• di εndokrin sistεm abnכmaliti dεm. Fɔ ɛgzampul, di tayroyd nɔ de wok fayn ɛn di ɔmon we de mek di ɔmon nɔ de wok igen.
• Yu kin gɛt ed pen bɔku tɛm, sɔntɛnde yu kin gɛt maygren .
• Pɔsin we nɔ de gro fayn
• Di delay fɔ tɔk ɛn langwej
• Di risk fɔ gɛt strok we de go ɔp .
• כgan dεm we de fכ bכn pikin dεm we nכ de divεlכp

Wetin kin mek pɔsin gɛt PHACE syndrome?

Risach pipul dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin mek sɔm pikin dɛn kin gɛt PHACE syndrome. Stɔdi dɔn sho se i kin bi bikɔs ɔf di tin dɛn we de na di bɔdi ɛn di tin dɛn we de apin na di say we i de. Bɔt di rayt we aw di jɛnɛtiks kin chenj we kin mek i apin nɔ klia yet. Sɔm masta sabi pipul dɛn biliv se na wan random (de novo) jin chenj we kin apin di tɛm we uman gɛt bɛlɛ. Dis min se i nɔ kin gɛt am frɔm mama ɛn papa.

Aw dɛn kin no se pɔsin gɛt PHACE syndrome?

Okay, so aw dɔktɔ dɛn kin no se yu gɛt PHACE syndrome? Bɔku tɛm, dɔktɔ go du gud ɛgzam pan in bɔdi ɛn du sɔm tɛst dɛn . Dɛn gɛt patikyula diagnostik krayteria , we na gaydlain. Na so dɛn kin disayd if pikin gɛt PHACE syndrome.

Sɔntɛnde, dɔktɔ dɛn kin gɛt aidia bɔt di sik frɔm di skan we yu kin du we yu gɛt bɛlɛ. Bɔt ɔda tɛm dɛn, i nɔ kin klia te afta dɛn bɔn di pikin, ɔ leta we i smɔl.

Bɔku tɛm, di dɔktɔ go fɔs luk fɔ big ɛmangioma na di pikin in bɔdi, mɔ na in fes, in nɛk, ɔ in ed. di prεsεns fכ wan εmangioma εn atכs wan כda ki fכm we riliyt to PHACE kin bi inof fכ di diagnosis.

Apat frɔm dat, dɛn kin du bɔku tɛst dɛn fɔ luk gud wan pan di pikin in bren, in at, in at, ɛn in yay. Dis na di tɛst dɛm we dɛn kin du:

• CT skan dɛn we dɛn kin du
• Echocardiograms – Dis de luk di strכkchכ εn di wok we di at de du.
• Ay ɛgzam – na ɔftalmɔlɔjis.
• Test fɔ yɛri
• MRI skan – Tek ditayla pikchɔ, mɔ di bren ɛn di blɔd vesel dɛm.
• Ultrasound skan we dɛn kin yuz

Aw dɛn kin trit PHACE syndrome?

We dɛn de trit PHACE sindrom, di men tin we dɛn kin pe atɛnshɔn pan na fɔ mek dɛn nɔ gɛt prɔblɛm dɛn we kin apin ɛn fɔ ɛp di pikin fɔ liv nɔmal wan wit dɛn sik dɛn. Di we aw dɛn kin trit am kin difrɛn difrɛn wan bay us ɔgan ɔ pat na di bɔdi di sik kin afɛkt.Dat min se nɔto ɔl pikin kin gɛt di sem tritmɛnt.

Dɛn kin du dis kayn tritmɛnt:

• Laser tεrapi fכ εmangiomas na di skin, כ gi dεm mεdikeshכn (e.g., beta-blכk dεm lεk propranolol) fכ shrink dεm.
• Fɔ gi spɛshal ɛdyukeshɔn , tɔk tɛrapi, ɛn fisiotɛrapi fɔ ɛp fɔ lan na skul.
• Sɔntɛnde, dɛn kin nid fɔ du ɔpreshɔn fɔ kɔrɛkt di bad tin dɛn we de na di at, di blɔd vesel, ɔ di bren.
• Fɔ gi difrɛn mɛrɛsin dɛn fɔ kɔntrol di sik we dɛn kɔl epilepsy, ed we de at, ɛn di ɔmon dɛn we nɔ balans.
• Fɔ gi sɔpɔt divays fɔ mek pɔsin nɔ yɛri fayn ɛn fɔ gi glas fɔ mek pɔsin nɔ ebul fɔ si fayn.

Bɔku famili dɛn kin tɔk to pɔsin we de advays dɛn bɔt di jɛnɛtiks fɔ no mɔ bɔt di tritmɛnt we dɛn kin gɛt fɔ dɛn pikin, ɛn aw fɔ ɛp dɛn as dɛn de gro. Dis kin rili ɛp wi.

Yu tink se dɛn go ebul fɔ stɔp dis?

Bɔt i sɔri fɔ no se, no we nɔ de fɔ mek dɛn nɔ gɛt PHACE syndrome. Bikɔs wi nɔ no di rayt tin we kin mek yu gɛt dis sik, natin nɔ de we yu go du fɔ ridyus di risk fɔ bɔn pikin wit dis sik.

Bɔt if yu want fɔ no mɔ bɔt di chans we yu gɛt fɔ gɛt pikin we gɛt wan sik, yu kin tɔk to yu dɔktɔ bɔt fɔ mek dɛn du tɛst fɔ yu jɛnɛtiks .

Wetin kin apin if mi pikin gɛt PHACE syndrome? Wetin wi fɔ ɛkspɛkt?

If yu pikin gɛt dis sik, dɛn go nid fɔ chɛk-ap ɔltɛm wit dɛn praymari kia dɔktɔ ɛn spɛshal pipul dɛn we de du difrɛn tin dɛn (e.g., dɔktɔ we de mɛn at, nyurolɔjis, ɔftalmɔlɔjis) fɔ mek shɔ se dɛn sik dɛn nɔ de afɛkt dɛn kwaliti layf . Dis na kɔndishɔn wae nid fɔ de manej fɔ lɔng tɛm.

Dis sik nɔr kin afɛkt di pikin nɔmɔ, bɔt i kin afɛkt yu ɛn di ɔda pipul dɛm na di famili. So, e fayn fɔ tink bɔt yu maynd wɛl bɔdi. Sɔm pipul dɛn kin gɛt bɔku fridɔm ɛn trɛnk we dɛn tɔk to pɔsin we sabi bɔt mental wɛlbɔdi biznɛs .

So wetin na de layf fɔ pɔrsin wae gɛt dis sik? I rili dipen pan aw di pikin in sik dɛn bad ɛn us ɔgan dɛn di sik dɔn afɛkt.

Pikin dɛn we gɛt bad bad bren ɛn at pwɛl kin gɛt shɔt layf. Bɔt if pikin gɛt smɔl smɔl sik dɛn ɛn dɛn de manej am fayn fayn wan, i kin liv nɔmal layf.

Ustɛm yu fɔ go to dɔktɔ?

If yu pikin gɛt ɛni wan pan dɛn tin ya, mek shɔ se yu go to dɔktɔ:

• If yu gɛt prɔblɛm fɔ it ɔ drink
• if di pikin nכ de mit di divεlכpmεnt maylston dεm we fit in ej, dat na if i de divεlכp let (e.g., nכ de ol in nεk כp pan tεm, nכ de waka, nכ de tכk).
• If yu nɔ de ansa tin dɛn wit yu yay, dat na if yu si sɔntin we strenj na yu yay.
• If yu si big, flat, rεd spat na yu bכdi (lεk εmangioma).

Ustɛm yu fɔ kɛr yu pikin go na ɔspitul kwik kwik wan?

If yu si sɔntin lɛk dis, kɛr yu pikin go na di imejensi rum we de nia yu wantɛm wantɛm , ɔ kɔl 1990:

• If yu de sho sayn dɛm fɔ strok (e.g. wan say na di fes we de drɔp wantɛm wantɛm, yu an nɔ de wok fayn, yu nɔ ebul fɔ tɔk).
• If yu gɛt sik we de mek yu sik.
• If yu gɛt prɔblɛm fɔ blo, if yu fil lɛk se yu de swɛla.
• If di at bit nɔ de bit ɔltɛm, ɔ if di pikin tɔn blu.

Kwɛshɔn dɛn fɔ aks di dɔktɔ/mrs.

Yu kin aks yu pikin in dɔktɔ ɔ nɔs kwɛstyɔn dɛn lɛk dɛn wan ya. Dɛn tin ya go ɛp yu fɔ ɔndastand di tin we de apin:

• Mi pikin rili gɛt PHACE syndrome? A nid fɔ du ɛni ɔda tɛst fɔ kɔnfirm am?
• Mi pikin nid fɔ gɛt ɔpreshɔn ? If na so i bi, wetin mek ɛn ustɛm?
• Tritmɛnt de fɔ pul mi pikin in hemangioma ? Yu tink se i go wɛl kpatakpata?
• Ɛni bad tin de we dɛn tritmɛnt ya kin du? Wetin na dɛn?
• Wetin na di tin dɛn we wi nid fɔ tek tɛm mɔ bɔt fɔ di pikin?
• Aw mi pikin in layf go tan lɛk?
• Yu tink se di pikin go ebul fɔ liv nɔmal layf wit dis sik?

Fɔ dɔn, sɔntin we wi fɔ mɛmba

We yu kam fɔ no se yu pikin gɛt wan sik we nɔ kin apin so ɔltɛm ɛn yu nɔ no bɔku tin bɔt am, yu kin fil bad bad wan, fil bad, ɛn fred. I rili at fɔ biliv. Dis kin rili afɛkt yu ɛn yu famili.

Sɔm pikin dɛn kin liv fayn fayn wan te dɛn big wit dis sik. Bɔt fɔ ɔda pipul dɛn, di layf we dɛn kin liv kin shɔt bikɔs ɔf di bad bad sayn dɛm. Fɔ jɔyn sɔpɔt grup, ɔr tɔk to wan jenɛtik kɔlnɔ ɔr mɛntɛl hεlth pɔrsin, kin bi big kɔrej ɛn trɛnk fɔ yu ɛn yu famili dis tɛm. So nɔ shem fɔ gɛt da ɛp de.

Mɛmba se nɔto yu wangren de. Dɔktɔ, nɔs, ɛn bɔku ɔda pipul dɛn de we go ɛp yu fɔ no bɔt dɛn prɔblɛm ya, lisin to yu kwɛstyɔn dɛn, ɛn gi yu di infɔmeshɔn we yu nid. So, kɔntinyu fɔ strɔng ɛn tray fɔ gi yu pikin di bɛst we i nid.

` PHACE syndrome, hemangioma, sik dεm we dεn bכn wit, bren abnכmaliti, at dεfεkt, atεrial dεfεkt, yay abnכmaliti, jεnεtik sik dεm, sik dεm we nכ kin apin, pikin hεlth