Yu pikin in wayt tin dɔn pwɛl? Lɛ wi tɔk bɔt Pɛriventrikular Lukomalasia (PVL) .

If dɛn bɔn yu pikin bifo tɛm, ɔ if yu de gɛt ɛnitin we de mek yu nɔ ebul fɔ gro, dis rili impɔtant fɔ yu. Sɔntɛnde, smɔl smɔl pat dɛn na di bren na di pikin dɛn kin pwɛl. Dis na wan kכndyushכn we dεn kכl periventricular leukomalacia, כ PVL fכ sכt. Nɔ mek dis fred, lɛ wi tɔk bɔt am ditayli.

Wetin na PVL? Lɛ wi ɔndastand am simpul wan.

Okay, lɛ wi si wetin PVL (Periventricular Leukomalacia) na simpul wan. Yu no, wi bren na wan ɔgan we rili kɔmpleks ɛn we wɔndaful. I gɛt difrɛn pat dɛn. Wan impɔtant pat na di ‘wayt tin’ . Dis na lεk di ‘waya’ sistεm na wi bren. di bren sεl dεm, dat na di nεv sεl dεm (nyuron) , de kכmכnik wit dεn wan dεm εn frכm di bren to di spεnal kכd, εn de chenj infכmeshכn tru dis ‘waya’ sistεm, dat na di (wayt mכtalman) .

So, if yu pikin gɛt periventricular leukomalacia, dat min se wan pat pan dis wayt tin dɔn pwɛl . dis damej kin mek di pikin in mכtalman in mכ talman de dilay , we na aw dεn de kכntro in bכdi, εn dεn intellektual skil dεm, we na aw dεn de tink εn כndastand tin dεm. Nɔto dat nɔmɔ, bɔt pikin dɛn we gɛt dis sik kin gɛt mɔ risk bak fɔ gɛt wan sik we dɛn kɔl sɛribra palsi .

Lɛ wi brok dis lɔng nem ‘periventricular leukomalacia’ smɔl ɛn ɔndastand am. Dɔn i go klia mɔ:

• ‘Peri’ min ‘arawnd’ ɔ ‘sɔrawnd’.
• ‘Ventricular’ de tכk bכt di kכva dεm we fulכp wit wata insay di bren. Wi kin kɔl dɛn ventrikl ya bak .
• ‘Leuko’ min ‘wayt’. Dis de tɔk bɔt di wayt tin we de na di bren.
• Malasia na abnɔmal ‘sɔf’ we di tisu dɛn kin apin we di tisu dɛn dɔn pwɛl. Dɔktɔ dɛn kin si dis tru tɛst.

So, fɔ tɔk am simpul wan, di periventricular leukomalacia na damej pan di wayt tin we de rawnd di ventricles na yu pikin in bren, we de mek dɛn sof.

di pikin dεm we dεn bכn bifo 32 wiks we dεn bכn, כ we dεn bכn pasmak, na dεn kin gεt di hεy risk fכ gεt PVL. dis risk de inkrεs wit di sכt di bεlε ej we dεn bכn, כ aw ali dεn bכn.

If yu pikin bɔn bifo tɛm, a ɔndastand se yu gɛt wan tawzin kwɛstyɔn ɛn fred na yu maynd. Yu go mɔs de tink bɔku tin bɔt yu pikin in wɛlbɔdi ɛn tumara bambay. Bɔt mɛmba se yu pikin in mɛdikal tim de ɔltɛm fɔ ɛp yu fɔ ɔndastand dis tin, ɛn fɔ ɛp ɛn gayd yu ɛn yu famili.

Wetin na di sayn dɛm fɔ pikin we gɛt PVL?

I kin tranga fɔ no wantɛm if pikin gɛt PVL jɔs bay we yu luk dɛn. Dat min se sɔntɛm no klia sayn nɔ de we de sho se pɔsin de na do . Bɔt as tɛm de go, PVL kin mek wan ɔ mɔ pan dɛn sik ya. I impɔtant fɔ kip yu yay pan dɛn tin ya:

• Mɔtalman delay: I nɔ kin izi fɔ sidɔm, kray, waka, ɔ yuz yu an ɛn fut fayn fayn wan. Fɔ ɛgzampul, sɔm pikin dɛn kin slo fɔ ol dɛn nɛk ɔp fayn fayn wan, ɔ dɛn kin slo fɔ rol ɔ sidɔm pas ɔda pikin dɛn.
• Cognitive delays / (Intellectual disability): Na we pɔsin nɔ ɔndastand ɛn nɔ ebul fɔ lan. Dis kin inklud tin dɛn lɛk fɔ delay fɔ tɔk wɔd ɔ fɔ mek i nɔ izi fɔ ɔndastand simpul instrɔkshɔn dɛn.
• Prɔblɛm fɔ balans: I nɔ kin izi fɔ mek yu balans.
• I nɔ kin ebul fɔ si ɛn yɛri fayn.
• Spastic quadriplegia (stif na ɔl di 4 limb dɛm, mɔ prɛsishɔn, i nɔ kin izi fɔ bɛn ɔ ɛkstɛnd) ɔ diplegia ( stiffness na tu leg nɔmɔ) – dɛn tin ya kin bi sayn dɛm bak fɔ sɛribra palsi .

Dɛn simptom ya kin bi we yu ol 2. Wan tin we yu fɔ mɛmba na dat PVL kin difrɛn frɔm wan pikin to ɔda pikin. I nɔ de afɛkt ɔlman di sem we.

Wetin na di tin dɛn we kin mek pɔsin gɛt PVL?

di men tin we kin mek i gεt PVL na we di pikin in bren nכ de gεt inof bכdi כ כksijεn , bifo כ afta dεn bכn am. Tink bɔt dis, wi bren sɛl dɛn nid ɔksijɛn ɛn tin dɛn fɔ mek dɛn liv ɛn wok. We dɛn nɔ gi dɛn tin ya fayn, dɛn sɛl dɛn de kin pwɛl.

As wi bin dɔn tɔk, di pikin dɛn we dɛn bɔn bifo tɛm (preterm) , ɔ di wan dɛn we dɛn bɔn smɔl fɔ di ej we dɛn gɛt bɛlɛ (smɔl fɔ di ej we dɛn gɛt bɛlɛ), na dɛn kin gɛt di ay risk. Dis na bikɔs dɛn bren stil de divɛlɔp, we de mek dɛn rili dilik. So, dɛn kin pwɛl mɔ.

Sɔm ɔda tin dɛn we kin gɛt fɔ du wit PVL na:

• Blɔd we de kɔmɔt na di bren (Intraventricular hemorrhage) .
• di rכpכshכn fכ di amniotic sak bifo tεm we uman bεlε.
• Infεkshכn na di mama in uterus we i bεlε.

Aw dɔktɔ dɛn kin no se pɔsin gɛt PVL?

If dɛn bɔn yu pikin bifo tɛm, dɔktɔ dɛn go du sɔm spɛshal tɛst dɛn fɔ chɛk yu pikin insay di fɔs de ɛn wik dɛn we yu pikin dɔn liv.Dɛn kin du dɛn tin ya fɔ no ɛni bren we dɔn pwɛl kwik kwik wan. Sɔntɛnde, dɛn nɔ kin du tɛst te di pikin sho sayn dɛn fɔ di sik, lɛk fɔ delay fɔ divɛlɔp.

Bɔku tɛst dɛn de we kin mek pɔsin no PVL kɔrɛkt wan:

• Bren MRI skan: MRI (Magnetic Resonance Imaging) skan kin tek rili klia, ditayli pikchɔ dɛn bɔt yu pikin in bren. dis kin luk fכ patεn dεm we de damej di wayt tin na di bren, we kכnsist wit PVL.
• Ɛd ɔltrasɔund: Ɔltrasɔund de yuz sawnd wev fɔ mek pikchɔ dɛn bɔt di bɔdi tisu dɛn. Dis na wan we bak we dɛn kin yuz fɔ no if pɔsin gɛt PVL. If yu pikin gɛt PVL, di ɔltra saund kin sho chenj dɛn na di wayt tin na di bren.

Wetin na di tritmɛnt dɛm fɔ PVL?

Naw, no dairekt tritmɛnt ɔ mɛrɛsin nɔ de fɔ PVL. Di damej we PVL kin mek na di bren kin de sote go . Bɔt nɔ wɔri. Difrɛn tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik dɛn we yu pikin gɛt ɛn fɔ mek i liv bɛtɛ layf . Dɛn tin ya kin gi yu pikin bɔku rilif. Dɛn tin ya kin bi:

• Fizik tritmɛnt: Dis kin ɛp yu pikin fɔ mek i ebul fɔ muv fayn fayn wan, ɔ fɔ kɔntrol in bɔdi fayn fayn wan. Dis inklud ɔl tu di fayn fayn motoka skil dɛm (lɛk fɔ ol pensil, bɔtin bɔtin, tay shuzlɛs) ɛn di gros motoka skil dɛm (lɛk fɔ sidɔm, nil dɔŋ, waka, ɛn rɔn). Imajin aw pikin kin strɔng if dɛn gɛt dis kayn tritmɛnt frɔm we dɛn smɔl!
• Occupational therapy: Dis kin ɛp di pikin fɔ lan nyu we fɔ du ɛvride wok, lɛk fɔ it wit tin dɛn ɛn fɔ drɛs, fɔ insɛf. Dis rili impɔtant fɔ mek di pikin ebul fɔ du mɔ fɔ insɛf .
• Spich therapy: If yu pikin gɛt prɔblɛm fɔ tɔk ɔ tɔk to ɔda pipul dɛn, dis tritmɛnt kin ɛp. I kin ɛp wit tin dɛn lɛk aw fɔ kɔl di wɔd dɛn, aw fɔ mek sɛntɛns, ɛn aw fɔ ɔndastand am.
• Di tin dɛn we dɛn kin yuz fɔ ɛp pikin: Di tin dɛn we dɛn kin yuz fɔ ɛp pikin lɛk wilchia, pɔsin we de waka, ɛn krach kin ɛp fɔ mek di pikin ebul fɔ muv mɔ, ɔ fɔ ebul fɔ muv. Dɛn tin ya kin ɛp pikin fɔ du bɔku tin dɛn fɔ insɛf.
• Mɛrɛsin: Sɔm mɛrɛsin kin mek di mɔsul dɛn spastisite.Dɛn kin ɛp fɔ kɔntrol di sayn dɛm lɛk, ɔr ɛp fɔ kɔntrol ɔda mɛrɛsin (e.g., epilepsy) wae yu pikin kin gɛt. Dɛn fɔ jɔs yuz dɛn tin ya ɔnda dɔktɔ in advays.
• Soshal savis ɛn ɛdyukeshɔn sɔpɔt: Yu pikin kin nid ɛkstra sɔpɔt wit skul wok ɔ ɔda tin dɛn na in layf ɛvride. Sɔshial woka dɛm, spɛshal pipul dɛm we sabi bɔt ɛdyukeshɔn, ɛn ɔda pipul dɛm we sabi du dɛn wok kin gi dɛn kayn sɔpɔt savis ɛn ɛp.

Di tin we impɔtant pas ɔl na fɔ mek dɛn du ɔl dis fɔ ɛp di pikin fɔ liv fayn, kɔmfyut, ɛn gladi layf as i pɔsibul.

Wi kin ebul fɔ mek dɛn nɔ gɛt PVL?

Natin nɔ de we yu kin du dairekt wan fɔ mek yu nɔ gɛt PVL. Di men gol na fɔ tray fɔ mek dɛn nɔ bɔn pikin bifo tɛm . Dis na bikɔs di pikin we dɛn bɔn bifo tɛm na di men tin we kin mek pɔsin gɛt PVL. If yu de pan denja fɔ bɔn pikin bifo tɛm, fɔ go na ples we gɛt spɛshal mɛrɛsin fɔ pikin dɛn we dɛn bɔn bifo tɛm, dat kin ɛp fɔ mek dɛn nɔ gɛt dis sik te to sɔm mak.

Pan ɔl we dɛn nɔ kin ebul fɔ stɔp di pikin we dɛn bɔn bifo tɛm ɔltɛm, yu kin ridyus di prɔblɛm we yu gɛt if yu tek dɛn tin ya we yu gɛt bɛlɛ:

• Fɔ kia fɔ pikin ɔltɛm , dat min se, go na klinik dɛn ɛn go to dɔktɔ dɛn.
• Manej yu wɛlbɔdi prɔblɛm, lɛk dayabitis , ay blɔd prɛshɔn, ɔ pwɛl hat .
• Nɔ smok, rɔm, ɔ yuz ɔda drɔgs kpatakpata.
• It it we gɛt fayn fayn tin dɛn fɔ it .
• Gɛt wet insay wɛlbɔdi we we yu gɛt bɛlɛ.
• Protekt yusɛf frɔm infɛkshɔn we kin ambɔg yu ɛn yu pikin we nɔ gɛt bɛlɛ.
• Tray fɔ ridyus strɛs as yu ebul ɛn rilaks.

If mi pikin gɛt PVL, wetin a go ɛkspɛkt fɔ tumara bambay?

Nɔto ɔl pikin dɛn we gɛt PVL kin afɛkt di sem we. Dis min se wan pikin kin rili difrɛn frɔm ɔda pikin . di prכgnosis/outluk fכ pikin de dipכnt pan sεvεra tin dεm. Fɔ ɛgzampul, di kayn we aw di pikin in bren dɔn pwɛl ɛn ɔda wɛlbɔdi prɔblɛm dɛn we i gɛt.

Sɔm pikin dɛn kin gɛt sɔm kayn sik wae nɔr kin pasmak , ɔr nɔr kin gɛt ɛni sayn atɔl. Dɛn kin liv nɔmal layf. Bɔt ɔda pipul dɛn kin gɛt bɔku prɔblɛm wit dɛn bɔdi ɛn/ɔ dɛn maynd . Yu dɔktɔ go ebul fɔ gi yu sɔm aidia bɔt di kayn damej we yu pikin dɔn gɛt ɛn aw i kin afɛkt in divɛlɔpmɛnt.

Jɔs tink bɔt, sɔntɛnde, i kin tan lɛk se pikin na big prɔblɛm we i yɔŋ, bɔt if dɛn trit am di rayt tritmɛnt, i kin gɛt bɛtɛ tin fɔ du wit dɛn yon intres. So, nɔ giv ɔp fɔ op.

I nɔ pɔsibul fɔ tɔk klia wan aw yu pikin go afɛkt. Di bɛst tin we yu kin du na fɔ tɔk to spɛshal pipul dɛn we de du risach ɛn trit PVL. As yu pikin de ol, dɛn go bɛnifit bɔku pan di ɛp we wan tim we gɛt spɛshal pipul dɛn we go ebul fɔ mek dɛn tritmɛnt akɔdin to wetin dɛn nid.

Wetin na di layf we pɔsin we gɛt PVL kin liv?

Dis na tin we de mɔna bɔku mama ɛn papa dɛn. כl di pikin dεm we gεt PVL kin εkspεkt fכ liv ful layf . Bɔt if yu pikin in bren dɔn pwɛl bad bad wan ɔ ɔda bad bad tin dɛn we kin apin to am , i kin shɔt smɔl. Sɔm tin dɛn we kin afɛkt di we aw dɛn de liv lɔng na:

• I nɔ izi fɔ it ɛn drink.
• I nɔ ebul fɔ muv di bɔdi ɔ i gɛt prɔblɛm wit di we aw i de muv.
• Di prɔblɛm dɛn we pɔsin kin gɛt we i de blo.

Dɛn tin ya nɔ kin afɛkt ɔlman, bɔt i fayn fɔ no bɔt tin dɛn lɛk dis. Tɔk to yu dɔktɔ bɔt dis.

So, lɛ wi luk sɔm pan di tin dɛn we wi nid fɔ mɛmba frɔm dis? (Mɛsej we dɛn kin tek go na os)

Mama ɔ papa kin go tru bɔku bɔku filin dɛn we dɛn bɔn pikin ɛn afta dɛn bɔn am, nɔto so? Ɛspɛshali if dɛn bɔn di pikin bifo tɛm ɔ dɛn fɔ kip am na NICU (Neonatal Intensive Care Unit) , di lod we yu kin fil da tɛm de nɔ kin izi fɔ tɔk bɔt. Dɔn, as yu de spɛn sɔm dez ɛn wik wit dɔktɔ ɛn tɛst, yu kin gɛt fɔ dil wit mɔ pas aw yu bin tink se i pɔsibul. Yu kin fil lɛk se ɔltin nɔ ebul fɔ kɔntrol yusɛf, ɛn yu kin ivin blem yusɛf.

Bɔt, pan dis kɔndishɔn we dɛn kɔl periventricular leukomalacia (PVL) , nɔbɔdi nɔ de fɔ blem . Ivin di wan dɛn we de stɔdi bɔt dis nɔ no di rayt tin we kin mek i apin. Wan ɔda impɔtant tin na dat PVL kin afɛkt ɛvri pikin difrɛn we . So, i impɔtant fɔ wok klos wit yu pikin in mɛdikal tim fɔ gi yu di bɛst mɛrɛsin, advays, ɛn sɔpɔt as yu pikin de gro.

Mɛmba se nɔto yu wan de pan dis waka. Yu dɔktɔ dɛn, nɔs dɛn, di wan dɛn we de mɛn yu, ɛn yu famili ɛn padi dɛn ɔl de fɔ sɔpɔt yu.

Dɔn bak, i rili impɔtant fɔ kia fɔ yusɛf . Na we yu strɔng ɛn gɛt wɛlbɔdi nɔmɔ yu go ebul fɔ kia fɔ yu pikin fayn fayn wan. Ɛnitɛm we yu de fil bad, tɔk to pɔsin we yu biliv. If nid de, nɔ shem fɔ go fɛn advays. Di dedikeshɔn we yu de du to yu pikin rili valyu.

`di pεriventrikular lכkomalasia, PVL, di bren we dεn dכn pwεl, di pikin we dεn bכn bifo tεm, divεlכpmεnt delay, sεribra palsi, pikin hεlth