Yu tink se wan say na yu pikin in bren tu big? Lɛ wi lan bɔt ɛmimɛgalɛnsɛfali!

Yu dɔn ɛva wɔri bɔt aw yu smɔl pikin in ed shep, ɔ bɔt di fit we i kin fit am ɔltɛm? Sɔmtɛm, sɔm kayn mɛrɛsin kin de wae nɔr kin bɔrku biɛn dɛn tin ya. Hemimegalencephaly na wan pan dɛn kayn sik ya. Pan ɔl we di nem kin tan lɛk se i kɔmplikt smɔl, lɛ wi tɔk bɔt am simpul wan.

Wetin na Ɛmimɛgalɛnsɛfali?

Fɔ tɔk am simpul wan, ɛmimɛgalɛnsɛfali na we wan say na yu pikin in bren (sɛribra ɛmisfya) nɔ big pas di ɔda wan. Tink bɔt wi bren lɛk big tumbu we gɛt tu af, wan lɛft ɛn wan rayt say. pan dis kכndishכn, na wan sayd nכmכ de gro pas aw i fכ gro. Sɔntɛnde dis big big pat kin jɔs bi na smɔl pat na da say de na di bren , ɔ di wan ol sayd kin big.

We wan say na di bren big dis we, ɔda chenj dɛn kin apin insay di bren. Fɔ ɛgzampul:

• Nyuron na wan kayn sɛl na wi bren. i kin bi se dεn nכ כganayz fayn (cytoarchitecture) כ di tכp layεr na di bren kin nכ fכm fayn (kכtikal displasia).
• Di kɔpɔs kalɔsɔm we nɔ de ɔ we dɔn pwɛl: Dis tan lɛk brij we de kɔnɛkt di tu say dɛn na di bren . If i nɔ de ɔ i dɔn pwɛl, prɔblɛm kin apin.
• di bכdi we fulכp wit wata (vεntrikul) dεm na di bren na di sayd we dεn afekt big.

Bikɔs sɔm pat dɛn na di bren nɔ de divɛlɔp fayn dis kayn we, i kin mek pɔsin gɛt sik we i de fil bɔku tɛm. Wi kin kɔl dis bak epilepsy . Bɔku tɛm, i nɔ kin izi fɔ kɔntrol dɛn sik ya wit ɔdinari mɛrɛsin dɛn we de mek pɔsin sik . If dɛn nɔ ebul fɔ kɔntrol di sik dɛn we dɛn kin gɛt wit mɛrɛsin, bɔku pikin dɛn kin gɛt ɔpreshɔn na dɛn bren (ɔpareshɔn fɔ di sik we dɛn kɔl ɛpilepsi).

Yu tink se men kayn ɛmimɛgalɛnsɛfali de?

Yɛs, sɔm men kayn tin dɛn de fɔ dis sik:

• Isolated hemimegalencephaly: dis de afekt כnli di כtamost layεr na di pikin in bren (sεribral kכtεks). Natin nɔ de we de insay di skin ɔ ɔda pat dɛn.
• Syndromic hemimegalencephaly: Dis nɔ kin afɛkt di bren nɔmɔ, bɔt i kin afɛkt di pikin in skin ɛn sɔm ɔda ɔgan dɛn bak. BɔtDi sayn dɛm na di skin kin apin sɔm mɔnt ɔ ivin sɔm ia afta dɛn bɔn am. כlso, wan say na di pikin in bכdi kin big pas di כda wan (hεmihypertrophy).
• Tכtal εmimegalεnsεfali: insay dis, di pikin in sεribεl εn sכmtεm ivin di bren stεm kin big. Dis kin apin isol ɔr syndromic.

Wetin na di sayn dɛm fɔ dis sik?

di fכs simptom we yu kin notis na yu pikin we de gεt ``infantile spasms כ seizures ''. Dis kin bi focal seizures. Dis min se na wan say nɔmɔ na di pikin in bɔdi kin twitch.

Ɔda sayn dɛm wae yu kin si na:

• Di ed we dɔn big (Macrocephaly).
• Shep fɔ ed we nɔ ivin.
• Difεlεns wit muvmεnt lεk fכ waka εn rכn.
• Wan say na di bɔdi nɔ de fil fayn ɛn wik.
• Divεlכpmεnt delay: Dis min se dεn de let fכ tכk, ple, εn lan di we we fit dεn ej.
• di we aw yu de si: fכ egzampl, af pan di rεnj we wi de si de lכs we yu de luk wit di tu yay (hεmianopia).

Wetin kin mek pɔsin gɛt ɛmimɛgalɛnsɛfali?

Infakt, sayɛnsman dɛn stil nɔ no di rayt tin we kin mek pɔsin gɛt dis sik. Sɔm pipul dɛn biliv se na jɛnɛtiks, we min se na bikɔs di pikin in DNA chenj . Bɔt i nɔto tin we pɔsin kin gɛt frɔm in mama ɛn papa. Dat min se yu gɛt di kɔndishɔn ɛn nɔto sɔntin we yu kin pas to yu pikin.

i go bi se arawnd di tכd wik we di bεlε de, wan chenj we de apin na wan pan di jin dεm we imכtant fכ divεlכpmεnt na di bren de apin. Mɛmba se dis sik nɔ kin kam bikɔs ɔf ɛnitin we yu bin du we yu gɛt bɛlɛ. Dis nɔto yu fɔlt ɔ na di papa in fɔlt.

Wetin na de risk factor wae kin afɛkt dis sik?

εmimegalεnsεfali kin apin wit כda jεnεtik kכndishכn dεm. dis min se pikin dεm we gεt dεn kכndyushכn dεm ya kin gεt hεmimegalencephaly:

• `Epidamal nevus sindrom`
• `Klippel-Trenaunay sindrom`
• `McCune-Albright sindrom`
• ``Nyurofibromatosis Tayp 1 (NF1)''.
• `KLOVS sindrom`
• `Proteus sindrom`
• `Haypomelanosis fɔ Ito`

Aw dɛn kin no se pɔsin gɛt ɛmimɛgalɛnsɛfali?

Fɔ no fɔ tru if na so i bi, yu pikin in dɔktɔ go fɔs chɛk yu pikin ɛn aks yu bɔt yu pikin in wɛlbɔdi istri. Dɔn, dɛn kin du dɛn tɛst ya:

• Wan MRI skan na di bren.
• EEG (Ilektroɛnsɛfalogram) tɛst. Dis de mekɔp di ilɛktrik wok we di bren de du.

wit di advans tεknכlכji tide, sכmtεm i pכsibul fכ no dis kכndyushכn we di pikin stil de na di bεlε ``di bεlε.`` dis dεn kin du dis bay we dεn de du spεshal MRI skan fכ di pikin in bren ``fetal MRI``.

Aw dɛn kin trit am?

Di men gol fɔ trit hemimegalencephaly na fɔ kɔntrol di sik dɛn we de mek pɔsin sik. Dɛn sik ya kin bigin sɔmtɛm we dɛn rili yɔŋ ɛn bɔku tɛm i nɔ kin izi fɔ kɔntrol wit mɛrɛsin (drug-resistant).

Dis sik kin mek yu gɛt difrɛn kayn fit. I impɔtant fɔ no se fit we kin apin we i smɔl, mɔ if i bigin we i smɔl, kin rili afɛkt di we aw pikin de gro. If yu nɔ kɔntrol di pikin, dat kin rili ambɔg di we aw pikin de gro ɛn divɛlɔp, ɛn i kin pwɛl di bren we de divɛlɔp. So, i impɔtant fɔ stɔp di fit kwik kwik wan.

Di tritmɛnt fɔ di sik we de mek pɔsin sik kin bigin wit mɛrɛsin we de agens di sik we de mek i sik. Sɔm pikin dɛn kin kɔntrol dɛn sik ya fɔ di res ɔf dɛn layf wit dɛn mɛrɛsin ya. Bɔt bɔku pan dɛn kin gɛt ɛpilepsi we nɔ kin tek drɔgs. Dɔn dɛn kin du ɔpreshɔn we dɛn kɔl hemispherectomy. dis min fכ pul di pat pan di pikin in bren we dεn afekt (sεribral kכtεks) כ fכ separet am frכm di כda say na di bren.

we dεn du dis כpεrayshכn, sכmtεm dεn kin kכl am "functional hemispherectomy." Insay dis ɔpreshɔn, di dɔktɔ kin kɔt ɛn separet di tisu ɛn nɛv dɛn we de kɔnɛkt wan say na di pikin in bren to di ɔda wan, bɔt di say na di bren we nɔ kin big, dɛn kin lɛf am insay di skel. insay "anatomical or complete hemispherectomy," wan say na di bren de separet frכm di כda say, we de pul di abnכmal sayd כlsay. Na nyurosɔjɔn we gɛt spɛshal trenin fɔ du ɔpreshɔn pan ɛpilepshi fɔ du dis ɔpreshɔn.

Yu tink se di ɔpreshɔn fɔ pul af pan di bren (Hemispherectomy) at?

Infakt, hemispherectomy na ɔpreshɔn we rili at fɔ du na in bren. Bɔku rizin dɛn de we mek fɔ du dis ɔpreshɔn kin at fɔ du dis ɔpreshɔn bikɔs ɔf di kɔndishɔn we dɛn kɔl ɛmimɛgalɛnsɛfali.

Di fɔs tin na dat, bɔku tɛm di blɔd vesel dɛn kin de na wan we we nɔ kɔmɔn. So, i nɔ kin izi fɔ fɛn dɛn ɛn kɔt dɛn we dɛn de du ɔpreshɔn. Sɔntɛnde dis kin mek pɔsin blɔd pasmak.

Apat frɔm dat, bikɔs di wan ol pikin in bren nɔ shep fayn, bɔku tɛm dɛn nɔ kin si di landmak dɛn we dɔktɔ we de du ɔpreshɔn fɔ no wan wan pat dɛn na in bren. Dɔn bak, bebi ɛn smɔl pikin dɛn kin lɔs bɔku blɔd we dɛn de du dis ɔpreshɔn. Dɛn fɔ tek tɛm wach dis ɛn dɛn fɔ chenj blɔd as nid de.

So, i rili impɔtant fɔ mek di mɛdikal tim we de trit yu pikin na tim we sabi du dis ɔpreshɔn ɛn we gɛt ɛkspiriɛns. I bɛtɛ fɔ mek dɛn du dis ɔpreshɔn na yu pikin na ɔspitul we kin du ɛmisfya ɔltɛm fɔ pikin dɛn we gɛt ɛmimɛgalɛnsɛfali ɛn we gɛt bɔku ɛkspiriɛns pan dis ɔpreshɔn.

Wetin na di prɔgnosis fɔ pikin we gɛt dis sik?

Aw yu pikin in kɔndishɔn go divɛlɔp dipen mɔ pan aw dɛn kin kɔntrol di fit fayn fayn wan ɛn if di abnɔmal bren divɛlɔpmɛnt de na wan say ɔ ɔl tu di say dɛn.

εmimegalεnsεfali na wan spεktrum kכndishכn we de afekt εvri pikin difrεnt wan. Dis min se di tin dɛn we kin apin kin difrɛn frɔm wan pikin to ɔda pikin.

• Bɔku pikin dɛn kin gɛt sɔm lɛvul pan intɛlektual disabiliti .
• Sɔm pikin dɛm wae gɛt wɛl kɔntrol kin ivin gɛt lɛk aw dɛn kin gɛt sɛns.
• Bɔt fɔ sɔm ɔda pikin dɛn, tin dɛn lɛk fɔ waka, fɔ tɔk, ɛn fɔ divɛlɔp dɛn maynd kin rili afɛkt.

kכlכsכl כl di pikin dεm we gεt εmimegalεnsεfali kin wik na wan say na di bכdi (hεmiparesis) . Dis na wan kayn sik we dɛn kɔl sɛribra palsi. Sɔm pikin dɛn kin wik smɔl, ɛn ɔda wan dɛn kin wik bad bad wan. Sɔm pikin dɛn kin gɛt wan sik we dɛn kɔl homonymous hemianopsia, usay af pan di say we dɛn de si kin lɔs. Bɔku pikin dɛn kin ebul fɔ waka ɛn tɔk, bɔt nɔto ɔl pikin dɛn kin ebul fɔ waka. Sɔm pikin dɛn nid spɛshal tin fɔ ɛp dɛn fɔ it, ɛn ɔda wan dɛn kin it nɔmal wan.

Wan stɔdi we dɛn jɔs du sho se afta dɛn dɔn du di ɔpreshɔn:

• di fit dכn stכp kכmplit wan pan 68% pan di pikin dεm.
• 43% pan di pikin dεm bin gεt avεrej כ sכmtεm intεlεjεns.
• 26% pan di pikin dεm dכn ebul fכ tכk di we aw dεn ej.
• 21% pan di pikin dεm dכn ebul fכ rid na infεkt lεvεl.

Yu tink se dɛn kin ebul fɔ avɔyd ɛmimɛgalɛnsɛfali?

Bikɔs sayɛnsman dɛn stil nɔ no di rayt tin we kin mek pɔsin gɛt dis sik, no we nɔ de fɔ mek i nɔ gɛt dis sik.

Aw yu kin kia fɔ pikin we gɛt dis sik?

If yu pikin gɛt di sik we dɛn kɔl Hemimegalencephaly, iDɛn nid wan big tim fɔ mɛn pipul dɛn. Tugɛda wit yu pikin in mɛdikal tim, yu kin mek wan plan we go mit yu pikin in nid. Yu pikin in mɛdikal tim kin gɛt:

• Di dɔktɔ dɛn we de mɛn pikin dɛn
• Di wan dɛn we de stɔdi bɔt nyurolɔji
• Nyurosɔjɔn dɛn
• Divɛlɔpmɛnt spɛshal pipul dɛn
• Di wan dɛn we de mɛn pipul dɛn we de tɔk, di wan dɛn we de mɛn pipul dɛn we gɛt wok, ɛn di wan dɛn we de mɛn dɛn bɔdi
• Ɔda pipul dɛn we de kia fɔ wɛlbɔdi biznɛs.

Us kwɛstyɔn dɛn yu fɔ aks yu pikin in dɔktɔ?

If dɛn no se yu pikin gɛt ɛmimɛgalɛnsɛfali, yu kin aks di dɔktɔ dɛn kwɛstyɔn ya:

• Us kayn hemimegalencephaly mi pikin gɛt?
• Mi pikin gɛt ɛni ɔda mɛrɛsin?
• Wetin na di bɛst tritmɛnt?
• Wetin na di we aw mi pikin de si tin?
• Wetin wi go du fɔ mek i nɔ gɛt bɛtɛ sik?

Mama ɛn Papa, una gɛt maynd smɔl! (Mɛsej we dɛn kin tek go na os)

Wi no se fɔ si yu pikin gɛt sik we de mek i sik, ɔ fɔ no se dɛn gɛt wan sik lɛk Ɛmimɛgalɛnsɛfali, i kin mek yu sɔprayz ɛn i kin mek yu at pwɛl. Bɔt mɛmba se nɔto yu wangren de. Di mɛdikal tim we de trit yu pikin de wit yu ɛvri step na di rod.

If yu de tray tranga wan fɔ bia wit dis kayn tin, aks yu dɔktɔ bɔt sɔpɔt grup dɛn we de ɛp famili dɛn we gɛt pikin dɛn we gɛt ɛmimɛgalɛnsɛfaly. We yu tɔk to mama ɛn papa dɛn we gɛt pikin dɛn we gɛt dis sik, dat kin ɛp yu fɔ ridyus di fred we yu de fred ɛn kam fɔ no di sik we yu pikin gɛt. Dɛn kin bi big trɛnk fɔ yu as yu pikin de lan fɔ liv wit de sik.

` εmimegalεnεfali, abnכmal bren divεlכpmεnt, infantil εpilepsi, bren כpεrayshכn, divεlכpmεnt dilay, jεnεtik kכndishכn, nyurolכjik sik dεm