Yu smɔl pikin in bren nɔ de wok fayn? Lɛ wi lan bɔt Porencephaly.

I nɔmal fɔ fil big big lod we dɔktɔ dɛn tɛl yu bɔt prɔblɛm we de wit yu pikin in bren divɛlɔpmɛnt. Sɔntɛnde, dɛn wɔd dɛn de, dɛn kɔndishɔn dɛn de, kin rili fɔrina to wi. Wɛl, wan sik de wae nɔr kin bɔrku wae dɛn kɔl Porencephaly wae yu nɔr dɔn yɛri bɔt, bɔt e impɔtant fɔ no bɔt. Mek wi tok abaut dis simpul, fo we we yu go andastan, okay?

Wetin rili na dis tin we dɛn kɔl porencephaly?

Fɔ tɔk am simpul wan, pɔrɛnsfali na wan tin we nɔ kin apin so ɔltɛm we di sak ɔ sist we ful-ɔp wit wata, ɔ sist, kin divɛlɔp na pikin in sɛribra ɛmisfya bikɔs ɔf di damej. Dis damej kin apin bɔku tɛm we di pikin stil de na di bɛlɛ ɔ jɔs afta dɛn bɔn am. Tink bɔt am, wi bren na tin we rili kɔmpleks. we sist fכm sכmsay insay am, i kin afekt di nכmal divεlכpmεnt εn di wok we di bren de du. Dis kin mek sɔm pikin dɛn nɔ ebul fɔ tɔk ɔ ɔda tin dɛn we nɔ kin izi fɔ dɛn nyurolɔjik .

Aw dis sik kin kɔmɔn?

Fɔ tru, dis sik we dɛn kɔl Porencephaly nɔ kin bɔku . No rayt statystik nɔ de fɔ no ɔmɔs pikin dɛn na di wɔl gɛt am. Bɔt i kin afɛkt gyal pikin ɛn bɔy pikin dɛn ikwal.

Yu tink se men kayn pɔrsin wae gɛt pɔrsin wae gɛt dis sik?

Yɛs, tu men kayn tin dɛn de fɔ dis.

• Acquired Porencephaly: Dis na di kayn we we dɛn kin gɛt mɔ. I kin kam bikɔs di bren de pwɛl we di pikin in bren de gro.
• Jɛnɛtik Porɛnsɛfali: Dis na wan sik we nɔ kin apin so ɔltɛm. I kin bi bikɔs ɔf wan chenj we de apin na di jɛnɛtiks .

Wetin mek dis de apin to wi pikin? Wetin na di rizin dɛn?

Bɔku rizin dɛn de fɔ dis. Dɛn rizin ya kin difrɛn bak fɔ di tu kayn we dɛn we wi bin dɔn tɔk bɔt.

Di tin dɛn we kin mek pɔsin gɛt jɛnɛtiks

pan ɔl we i nɔ kin apin so ɔltɛm, dis kכndyushכn kin kכz bay chenj, כ jεnεtik mכtεshכn, insay sכm jin dεm (fכ egzampl, di jin dεm `COL4A1` כ `COL4A2` ). dis jin dεm rili imכtant fכ prodyuz protin dεm we de gi strכkchכral trεnk to difrεn tisu dεm na wi bכdi. So, if difεkt de na dεn jin dεm ya, i kin afekt di strכkchכ fכ di tisu dεm εn mek tin lεk di sist dεm we dεn mεnshכn na di bren.

Di Kɔz dɛn we dɛn dɔn gɛt

Dis na di kayn we we pipul dɛn kin gɛt mɔ. wetin de apin ya na we di nכmal bכdi fכ fכlכ di pikin in bren de ambɔg. Dis kin kam bikɔs sɔmtin lɛk strok , ɔksijɛn nɔ de na di bren, ɔ blɔd de kɔmɔt na di bren. Dis damej kin apin we di pikin de na in bɛlɛ, we dɛn bɔn am, ɔ lɔng afta dɛn bɔn am.

We di bren nɔ gɛt ɔksijɛn ɔ i gɛt blɔd, di wata we ful-ɔp wit wata (cyst) kin fɔm insay di ples fɔ di nɔmal bren tisu. Dis kin bi mɔ if yu gɛt dɛn tin ya we kin mek yu gɛt dis sik :

• Yuz rɔm ɔ drɔgs we yu gɛt bɛlɛ. Dis na sɔntin we wi fɔ rili avɔyd.
• Dayabitis we pɔsin kin gɛt we i gɛt bɛlɛ. If yu gɛt dis sik, yu fɔ fala yu dɔktɔ in instrɔkshɔn dɛn gud gud wan.
• Infεkshכn dεm na di mama we i bεlε.
• Infεkshכn dεm we kin apin afta dεn bכn di pikin.
• Trauma we dɛn de bɔn pikin.
• Ɔda tin dɛn we kin mek di blɔd nɔ de go fayn na di bren na sɔm blɔd prɔblɛm dɛn ɛn sik dɛn we kin apin we pɔsin de chenj in bɔdi .

Sɔntɛnde, dɔktɔ dɛn kin gɛt aidia bɔt di ɔndalayn kɔz bay usay di sist dɛn de, dɛn saiz, ɛn aw dɛn bɔku.

Wetin na di sayn dɛm fɔ dis sik? Aw wi kin no am?

Di sayn dɛm fɔ porencephaly kin difrɛn frɔm wan pikin to ɔda pikin. Dɛn kin difrɛn bak pan aw de sik kin tranga ɛn ustɛm dɛn kin bigin. di nyurolכjik dεfisit dεm dipכnt pan usay di sist dεm de na di bren εn aw dεn big. Dis kin tan lɛk we pɔsin kin gɛt strok.

Na sɔm kɔmɔn sayn dɛn ya:

• Di delay fɔ tɔk ɛn langwej. Sɔntɛnde, pipul dɛn nɔ kin ebul fɔ tɔk wɔd dɛn we dɛn de ol.
• Dilay we di bɔdi de divɛlɔp. Fɔ ɛgzampul, fɔ let fɔ bigin waka.
• Dilayed kognitiv divεlכpmεnt.
• Dilayed soshal divɛlɔpmɛnt.
• Di ed we big ɔ smɔl we yu kɔmpia am to di bɔdi saiz.
• di mכsul tכn dεm we de dכn (Hypotonia). Di pikin in bɔdi kin fil bad bad wan.
• Wiknɛs na di bɔdi.
• Prɔblɛm dɛn we de prosɛs di infɔmeshɔn we pɔsin kin gɛt. Fɔ ɛgzampul, di we aw pipul dɛn kin chenj we dɛn tɔch ɔ sawnd.
• Di sik dɛn we kin mek pɔsin sik. Dis na wetin wi sabi as fit.

Di impɔtant tin na dat nɔto ɔl dɛn kwaliti ya de insay ɛvri pikin. Sɔm pikin dɛn kin gɛt wan ɔ tu pan dɛn kwaliti dɛn ya nɔmɔ, ɛn ɔda wan dɛn kin gɛt bɔku.

Us ɔda prɔblɛm dɛn dis kin mek pɔsin gɛt?

sכm tεm dεm, dis porεnsεfali kin mek di wata we de rawnd di bren εn spεnal kכd kכlכ, we min sedi chanεl dεm we di sεribrospεnal fכluid (CSF) de fכlכ kin bi blכk. dis kin mek di wata de bכku εn mek prεshכn rawnd di bren. Dɛn kɔl dis haydrosɛfalɔs . If dis prɛshɔn go ɔp, di sayn dɛm we bin dɔn de kin wɔs ɔr nyu sayn dɛm kin kam. Fɔ ɛgzampul, ed kin at, vɔmit, ɛn prɔblɛm wit yu yay .

Dɔn bak, bikɔs porencephaly kin mek dɛn gɛt sik we dɛn kɔl epilepsy . Sɔm pikin dɛn kin gɛt mɔsul spasticity bak , we na wan sik we di mɔsul dɛn kin stif ɛn stif.

Aw dɔktɔ dɛn kin no bɔt dis?

Bɔrku tɛm, pikin dɛm wae gɛt pɔrsin kin sho sayn dɛm fɔ dis sik jɔs afta dɛn bɔn dɛn. Bɔrku pikin dɛn kin gɛt dis sik bifo dɛn ol wan ia. sכmtεm, dεn kin si dεn sist dεm ya pan di כltra saund skan we dεn kin du bifo dεn b כn we di pikin stil de na di bεlε. If na so i bi, di dɔktɔ kin no di sik bifo dɛn bɔn di pikin.

Fɔ mek di dɔktɔ no se i gɛt di sik, i go nid fɔ si ditayli pikchɔ dɛn bɔt yu pikin in bren. Fɔ du dis, yu ɔ yu pikin go nid fɔ du tɛst dɛn lɛk dɛn wan ya:

• Ultrasound skan we dɛn kin yuz.
• CT skan we dɛn kin du.
• MRI skan we dɛn kin du.

Yu tink se tritmɛnt de fɔ dis? Aw dɛn de manej am?

Fɔ tɔk tru, no definitiv mɛrɛsin nɔ de fɔ porencephaly. Bɔt bɔku we dɛn de fɔ kɔntrol di tin dɛn we i de du. di tritmεnt na fכ ridyus di nyurolכjik impεryans dεm we de apin.

Fɔ ɛgzampul, if yu gɛt di sik we wi bin tɔk bɔt, we na haydrosɛfalɔs, dɛn kin pul di wata we pasmak we dɔn gɛda rawnd di bren.

Na sɔm tritmɛnt dɛn we go ɛp di pikin:

• Mɛrɛsin we de mek pɔsin nɔ gɛt sik. Kɔntrol di biginin fɔ di fit.
• Mɛrɛsin fɔ mek di mɔsul dɛn tayt fayn fayn wan.
• Mɛrɛsin fɔ ridyus di pen.
• Fizik tritmɛnt: Mek di mɔsul dɛm na di bɔdi strɔng ɛn mek i izi fɔ muv.
• Tɛrapi fɔ tɔk. Fɔ win di prɔblɛm dɛn we yu kin gɛt fɔ tɔk.
• Occupational therapy: Praktis fɔ du di wok dɛn we yu de du ɛvride fɔ yusɛf.
• Sɔntɛnde, dɛn kin du ɔpreshɔn fɔ pul wan sist.
• כpεrayshכn fכ drεn di εksyכs sεribra fכluid dεm kin du bak fכ pul di εksyכs sεribra spεnal fכluid.

Di impɔtant tin na dat nɔto ɔl dɛn tritmɛnt ya nid fɔ ɛvri pikin. Dɔktɔ dɛn go disayd di bɛst tritmɛnt bay di pikin in kɔndishɔn.

Aw di tumara bambay go tan lɛk fɔ pikin we gɛt dis sik? (Prɔgnosis) .

Dis na tin we at fɔ tɔk smɔl. Bikɔs sɔm pikin dɛn we gɛt porencephaly kin gɛt sɔm prɔblɛm dɛn wit dɛn nyurolɔjik. Bɔt sɔm pikin dɛn kin liv nɔmal wan ɛn nɔ gɛt ɛni prɔblɛm. Aw de sik kin tranga kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin.

di fyuchu fכ pikin dipכnt pan di saiz fכ di sist dεm na di bren, usay dεn de, di nכmba fכ di sist dεm, εn aw dεn de afekt εvri pikin. Bɔt if dɛn no di pikin kwik kwik wan ɛn gi di rayt tritmɛnt ɛn tritmɛnt, bɔku pikin dɛn kin liv fayn layf ɛn we go mek dɛn gɛt bɔku tin dɛn fɔ du.

Yu tink se dɛn kin ebul fɔ avɔyd Porencephaly?

Dɛn nɔ kin ebul fɔ stɔp dis sik ɔltɛm. Na bikɔs i nɔ kin izi fɔ wi fɔ kɔntrol tin dɛn we gɛt fɔ du wit jɛnɛtiks. Bɔt if yu gɛt bɛlɛ we gɛt wɛlbɔdi, dat kin mek yu pikin nɔ gɛt dis sik te to sɔm mak.

I rili impɔtant fɔ avɔyd fɔ drink rɔm ɔ tek drɔgs we yu gɛt bɛlɛ. If yu gɛt gestational diabetes, fala yu dɔktɔ in instrɔkshɔn dɛn fayn fayn wan. Yu fɔ tray bak fɔ protɛkt yusɛf frɔm infɛkshɔn.

Jɛnɛtik Porɛnsɛfali na wan sik we sɔm tɛm dɛn kin pas to pikin if wan pan di mama ɛn papa gɛt di jin we dɔn chenj . We yu tɛst yu jɛnɛtiks, dat kin ɛp fɔ no if yu ɔ yu patna gɛt di jin. We yu tɔk to pɔsin we de advays yu bɔt di jɛnɛtiks, dat go ɛp yu fɔ ɔndastand di prɔblɛm we yu gɛt fɔ pas di jin to yu pikin.

Wetin na di ɔda tɛm dɛn we yu fɔ go to dɔktɔ?

If dɛn dɔn no se yu pikin gɛt ɔr dɛn tink se i gɛt porencephaly, yu fɔ go to dɔktɔ wantɛm wantɛm if ɛni wan pan dɛn sik ya kam ɔ i wɔs:

• Ɛd we de at
• Fɔ vɔmit
• Prɔblɛm dɛn wit balans ɔ kɔdineshɔn
• Di sik dɛn we kin mek pɔsin sik/fit
• Paralayz pan ɛni pat na dɛn bɔdi
• Vishɔn kin chenj

Wetin na di impɔtant kwɛstyɔn dɛn we wi fɔ aks di dɔktɔ?

Yu kin aks di dɔktɔ kwɛstyɔn dɛn lɛk:

• If wi gɛt ɔda pikin, wetin na di chans fɔ mek da pikin de gɛt porencephaly bak?
• Yu tink se i fayn fɔ mek dɛn du tɛst fɔ wi famili?
• Yu tink se mi pikin go nid ɔpreshɔn fɔ pul di sist ɔ wata we pasmak na in bren?
• Wetin na di bɛst tritmɛnt fɔ ɛp mi pikin fɔ bia wit di delay we i de divɛlɔp?

Fɔ dɔn, na dis mama ɛn papa gɛt fɔ se... (Take-Home Message)

Porencephaly na wan sik we nɔ kin apin so ɔltɛm. Pikin dɛm wae gɛt dis sik kin gɛt disabled na dɛn bɔdi ɛn in maynd, sɔmtɛm nɔr kin pasmak, sɔmtɛm kin tranga. Bɔt mɛmba se if dɛn no di sik kwik kwik wan ɛn di tritmɛnt ɛn tritmɛnt we dɛn nid, bɔku pikin dɛn kin liv fayn layf, gladi at, ɛn gɛt sakrifays. Nɔto yu wan de, dɔktɔ dɛn, dɔktɔ dɛn, ɛn bɔku ɔda pipul dɛn de fɔ ɛp yu ɛn yu pikin. Di tin we impɔtant pas ɔl na fɔ nɔ giv ɔp di op ɛn gi yu pikin di lɔv, kia, ɛn sɔpɔt we i nid.

Porencephaly , bren sik, pikin sik, jεnεtik sik, nyurolכjik sik, divεlכpmεnt delay