Yu smɔl pikin dɔn bigin fɔ blink kwik kwik wan wantɛm wantɛm? Ɔ dɛn yay dɔn bigin fɔ rol bak ɛn dɛn ed tan lɛk se dɛn de go bak? Sɔntɛnde dis kin kam wit smɔl smɔl sik we de mek pɔsin sik. As mama ɔ papa, na nɔmal tin fɔ mek yu fil bad bad wan ɛn wɔri we yu si sɔntin lɛk dis. Tide wi go tɔk bɔt wan kayn epilepsy wae nɔr kin bɔrku wae kin sho dɛn kayn sik ya, bɔt wi nɔr kin yɛri bɔt dɛm bɔrku tɛm. Dɛn kɔl dis Jeavons Syndrome, ɔ Epilepsy With Eyelid Myoclonia.
Wetin na di sik we dɛn kɔl Jeanvons Syndrome?
Fɔ tɔk am simpul wan, Jevons syndrome na wan kayn sik we nɔ kin apin so ɔltɛm . I kin bi se yu de blink wantɛm wantɛm, wantɛm wantɛm, ɔ yu yay de shek shek. Bɔku tɛm dis sik kin kam bikɔs di layt de chenj ɛn di we aw i de fil bɔt layt . Bɔku tɛm di sik kin bigin we dɛn smɔl .
Yu go dɔn fil so fred we yu pikin gɛt in fɔs sik we dɛn kɔl seizure, ɛn ɛvri tɛm we dɛn gɛt wan sik, nɔto so? Ɔltɛm, pipul dɛn kin wɔri bɔt dɛn sef. Pan ɔl we yu pikin want fɔ ple, lan, ɛn gladi lɛk ɔda pikin dɛn, i nɔmal fɔ lɛ una ɔl tu fil se una nɔ ebul fɔ du natin bɔt di tin we apin.
Bɔt di gud nyus na dat, tritmɛnt dɛn de fɔ kɔntrol dɛn sik ya ɛn fɔ kɔntrol di impak we dɛn kin gɛt pan yu ɛn yu pikin in maynd . Jevons syndrome nɔto wan sik we de go as di pikin de gro, na wan sik we de apin ɔlsay na in layf . So, di pikin go nid fɔ gɛt di rayt mɛrɛsin ɛn fɔ wach am ɔlsay na in layf.
Yu tink se di Jeavons Syndrome denja?
Yɛs, di Jeavons Syndrome kin denja pan sɔm kayn tin dɛm . Di kayn sik ɛn aw i siriɔs kin gɛt big impak pan di pikin in ɔl wɛlbɔdi. Bikɔs wi nɔ no ustɛm di pikin go gɛt sik, chans de fɔ mek di pikin fɔdɔm wantɛm wantɛm ɛn wund . So, i impɔtant fɔ go to dɔktɔ ɛn fala di instrɔkshɔn dɛn fɔ mek di pikin sef.
Aw dis sik nɔ kin apin so ɔltɛm?
Jeavons Syndrome kin afɛkt bitwin 1% ɛn 2% pan di pipul dɛm wae dɛn kin no se gɛt epilepsy. Dɛn se na lɛk 50 milyɔn pipul dɛn ɔlsay na di wɔl gɛt wan sik we dɛn kɔl epilepsy. So imajin aw smɔl pan dɛn gɛt dis sik.
Wetin na di sayn dɛm wae de sho se pɔrsin gɛt dis sik wae de mɛk pɔrsin gɛt Jeavons Syndrome?
Tri men tin dɛn de we kin mek pɔsin gɛt di sik we dɛn kɔl Jevons syndrome:
1. di pikin in yay dεm de kכloz כ blink kכntinyu biכs fכ invכlכntri, rεpid kכntrikshכn fכ di aylid mכsul dεm (`Eyelid Myoclonia`).Dis tεm, di pikin in ed εn in yes kin fכl bak. Dis kin apin wit ɔ atɔl we yu lɔs yu kɔnshɛns wantɛm wantɛm (wan `absence seizure`). Dis kin las fɔ sɔm sɛkɔn dɛn. Dis kin apin bɔku tɛm insay di de, bɔt dɛn kin si am mɔ na mɔnin we yu wek .
2. di sik we de mek yu yay klos (`Eyelid closure-elicited electroencephalographic paroxysms`) na sik we de kכz fכ chenj di layt כ we i nכ de slip. dis na we di pikin kכlos in yay dεm εn de εkspiriεns abnכmal ilektrikal patεn dεm na di bren (`Eyelid closure-elicited electroencephalographic paroxysms`). Dɔktɔ kin luk fɔ dɛn patɛns ya wit ``EEG`` tɛst.
3. Fɔtosɛnsitiviti. Layt dɛn we de flash kin mek pɔsin gɛt sik. Brayt layt ɔ chenj layt patɛn (e.g., san layt we de shayn tru tik) kin mek yu nɔ fil fayn.
Imajin se we yu pikin de ple, in yay bigin fɔ blink kwik kwik wan wantɛm wantɛm ɛn in ed go bak. Afta sɔm sɛkɔn, i kin kam bak to in nɔmal. Aw i go vɛks if dis kin apin bɔku tɛm insay di de?
pan tap dat, di pikin kin jכk in an εn leg dεm wantεm wantεm (`Myoclonic seizures`) כ di wan ol bכdi jכk we i nכ kin kכntro (`Grand mal` כ `Tonic-clonic seizures`) . Bɔt, dɛn tin ya nɔ kin bɔku.
Wetin na de tin wae kin mek pɔrsin gɛt Jeavons Syndrome?
Dɛn sayn ya kin kam mɔ pan layt dɛn we de shayn, we de flash ɔ we de flik .
- Strobe layt dɛn lɛk disko layt dɛn
- Wan layt bɔl we nid fɔ chenj (on, ɔf) .
- Di san we de apia wantɛm wantɛm tru di klawd
- Layt we de shayn na di wata we de ɔp
- Di chenj we di layt de chenj we motoka de drayv tru tik dɛn
Dɛn tin ya kin mek yu gɛt sik. So , if yu avɔyd sɔm layt sɔs ɔ protɛkt yu pikin in yay frɔm di chenj we di layt de chenj, dat kin ɛp fɔ mek dɛn nɔ gɛt dɛn sik ya ɔltɛm.
Na us ej di sayn dɛm fɔ di Jeavons Syndrome kin bigin?
Bɔku tɛm dɛn sik ya kin bigin we dɛn smɔl . Di avrej ej fɔ bigin na bitwin 1 ɛn 15 ia , bɔt dɛn kin ripɔt bɔku pan di kes dɛm bitwin 6 ɛn 8 ia .
Wetin kin mek pɔsin gɛt di sik we dɛn kɔl Jeanvons Syndrome?
Dɛn nɔ dɔn ɔndastand gud gud wan yet di rayt tin we kin mek pɔsin gɛt di sik we dɛn kɔl Jevons syndrome , bɔt risach dɔn sho se wan chenj de na di jɛnɛtiks . Dɛn dɔn si se sɔm chenj dɛn we kin apin na dɛn jin ya kin mek dɛn gɛt dis sik we de mek pɔsin sik:
- `CHD2`
- `KƆL6A3`
- `KCNB1`
- `NAA10`
- `NƐKSMIF`
- `RORB`
- `SYNGAP1`
Sɔm pan di chenj dɛm we de apin na di jɛnɛtiks we de mek dis sik nɔr dɔn no yet. di we aw εvri jεnεtik chenj de pas frכm jεnereshכn to jεnereshכn (inheritance) kin difrεn. Yu kin aks pɔsin we de advays yu bɔt yu jɛnɛtiks fɔ ɛp yu fɔ no mɔ bɔt dis.
Udat de pan denja pas ɔl fɔ gɛt dis sik?
Ɛnibɔdi kin gɛt di sik we dɛn kɔl Jeavons Syndrome. Bɔt di risk kin bɔku if pɔsin na yu famili gɛt epilepsy . Na lɛk 80% pan di pikin dɛm wae dɛn kin no se gɛt Jeavons Syndrome gɛt blɔd fambul wae gɛt jenɛral epilepsy bak .
Dɔn bak, dis sik kin apin to gyal pikin dɛn pas bɔy pikin dɛn .
Wetin na de prɔblɛm wae kin kam wit di Jeavons Syndrome?
Na lɛk wan pan ɛvri fayv pipul dɛm wae dɛn no se gɛt Jevons syndrome kin gɛt sɔm kayn absens sik wae de kam afta dɛnsɛf, ɛn nɔr kin rɛst bitwin dɛn. Dɛn kɔl dis aylid myoklonic status epilepticus .
Di tin we impɔtant pas ɔl na dat, status epilepticus na wan mɛdikal imejensi we de mek pɔsin in layf de pan denja. I nid fɔ go to dɔktɔ wantɛm wantɛm!
If yu pikin gɛt sik we de te pas 5 minit, ɔ if dɛn gɛt sɔm sik dɛn we de kam insay wan row we nɔ gɛt brek bitwin, kɔl 911 wantɛm wantɛm ɔ kɛr yu pikin go na di ɔspitul imejensi dipatmɛnt we de nia am.
Epilepsy kin gɛt bɔku impak bak pan pikin in maynd wɛlbɔdi . Afta di pikin dɔn gɛt sik, i kin fil se i de fred ɛn i nɔ kin rɛst. Wae pɔrsin kin wɔri ɛn pwɛl hat kin kam bak wit Jevons syndrome. So, i impɔtant fɔ kia fɔ di pikin in maynd ɛn if nid de, go to ɛp frɔm pɔsin we de gi advays bɔt in maynd .
Aw dɛn kin no se pɔsin gɛt di sik we dɛn kɔl Jeanvons Syndrome?
Dɔktɔ kin no se i gɛt Jeavons Syndrome bay we i tink bɔt dɛn tɛst ɛn tin ya:
- Na bay we dɛn de du wan nyurolɔjik ɛgzam.
- Na bay we yu no di pikin in wɛlbɔdi biznɛs ɛn in famili wɛlbɔdi istri (especially epilepsy).
- bay we yu du wan EEG tεst (Ilektroεnεsεfalogram - EEG).
We dɛn de du dɛn tɛst ya, di dɔktɔ go luk fɔ di tri men sayn dɛn we de sho se pɔsin gɛt Jevons sindrom we wi bin dɔn tɔk bɔt. I go pul ɔda tin dɛn bak we kin mek pɔsin gɛt di sem kayn sik fɔ mek dɛn no di sik kɔrɛkt wan.
Aw dɛn kin trit di Jeavons Syndrome?
Dɛn kin trit Jevons sindrom wit mɛrɛsin dɛn we de mek pɔsin nɔ gɛt sik.Apat frɔm dat, yu dɔktɔ kin se yu fɔ wɛr spɛshal lens fɔ kɔntrol di sayn dɛn we layt kin kam wit.
Us kayn mɛrɛsin dɛn kin yuz fɔ dis?
Yu pikin in dɔktɔ kin gi yu wan ɔ mɔ pan dɛn mɛrɛsin ya we de mek i nɔ gɛt sik (we dɛn rayt dɛn akɔdin to di alifbɛt):
- Brivaracetam `(Brivaracetam)`
- Klɔbazam
- Etosuximide we gɛt di sik
- Lakosamid we dɛn kɔl
- Lamotrijin we dɛn kɔl Lamotrigine
- Levetiracetam `(Lɛvɛtirasɛtam)`
- Pɛrampanɛl `(Pɛrampanɛl)`
- Topiramat we gɛt di sik
- Valproik asid `(Valproik asid)`
Ɔlman kin ansa difrɛn we we dɛn de tek mɛrɛsin fɔ mek pɔsin sik . I kin tek tɛm fɔ fɛn di rayt mɛrɛsin ɔ di kɔmbayn mɛrɛsin fɔ yu pikin, ɛn yu kin nid fɔ tray bɔku difrɛn mɛrɛsin dɛn . Dis kin mek yu at pwɛl ɛn sɔntɛnde i kin tek lɔng tɛm. Insay dis tɛm, yu go nid fɔ go to yu pikin in dɔktɔ ɔltɛm fɔ si aw yu pikin in bɔdi de du di mɛrɛsin dɛn.
Di dɔktɔ go tɛl yu bak bɔt di bad tin dɛn we kin apin to ɛni mɛrɛsin we dɛn gi yu pikin. If yu gɛt ɛni kwɛstyɔn bɔt di tritmɛnt we di dɔktɔ tɛl yu fɔ du, aks am.
Yu tink se dɛn kin trit dis sik bay we dɛn chenj di tin dɛn we di pikin de it?
Nɔr patikyula it nɔr de we dɛn kin it fɔ di Jeavons Syndrome. Naw, no data nɔ de fɔ sɔpɔt di yus fɔ di ketogenic diet as tritmɛnt fɔ dis kɔndishɔn.
Wetin na di fiuja fɔ pikin we gɛt Jeavons Syndrome? (Prɔgnosis) .
Di fiuja fɔ pikin we gɛt dis sik kin difrɛn difrɛn wan bay di patikyula tin we ɛni pikin gɛt . Yu pikin in dɔktɔ na di bɛst pɔsin fɔ no bɔt dis.
No mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl Jevons syndrome, bɔt dɛn de du mɔ risach. Pan ɔl we na sik we pɔsin kin gɛt fɔ ɔl in layf, tritmɛnt dɛn de fɔ kɔntrol di sik we pɔsin kin gɛt .
Yu tink se di sik we dɛn kɔl Jeanvons Syndrome kin afɛkt di pikin in sɛns?
We pikin de sik ɛn we i de blink in yay, dat kin mek i nɔ ebul fɔ lan na di klasrum . If dɛn nɔ ebul fɔ kip dɛn yay opin fayn fayn wan, i kin at fɔ tek pat ful wan na klas. Bɔku pikin dɛn we gɛt Jevons sindrom kin gɛt sɔm prɔblɛm fɔ lan na skul ɛn dɛn kin nid ɔda sɔpɔt fɔ lan buk . Bɔt dis sik nɔ kin afɛkt di pikin in sɛns dairekt wan .
If di pikin gɛt dilɛy fɔ divɛlɔp, i kin bi sayn fɔ se na jenɛtik kɔz fɔ Jevons syndrome.
Yu tink se di Jeavons Syndrome kin afɛkt di layf we pɔsin de liv?
Di Jeavons Syndrome nɔ kin afɛkt di pikin in layf dairekt wan . Nɔmal layfspan pɔsibul. Bɔt di kayn we aw di pikin kin sik ɛn aw di pikin in bɔdi kin biev we dɛn gɛt tritmɛnt kin afɛkt di pikin in ɔl in wɛlbɔdi. Dɔktɔ kin ɛp fɔ wach ɛn manej di sik ɔlsay na di pikin in layf.
Ustɛm a fɔ go to dɔktɔ?
If yu pikin gɛt sik fɔ di fɔs tɛm, kɔl di imejensi savis wantɛm wantɛm ɔ kɛr am go na ɔspitul.
If dɛn dɔn no se yu ɔ yu pikin gɛt di sik we dɛn kɔl Jeavons Syndrome, if yu gɛt sik we de mek yu sik ɔ yu gɛt sɔm sayn dɛn we tan lɛk se i de wɔs, ɔ if yu de gɛt sayd ɛfɛkt frɔm di tritmɛnt, go to dɔktɔ wantɛm wantɛm . Yu dɔktɔ kin ɛp yu ɛn yu pikin fɔ kɔntrol di sik ɛn ansa yu kwɛstyɔn dɛn.
Us kwɛstyɔn dɛn a fɔ aks di dɔktɔ?
- "Dɔkta/Madam, us kayn tritmɛnt bɛtɛ fɔ mi pikin?"
- "Wetin na di poshubul sayd effekt dɛm fɔ dɛn tritmɛnt ya?"
- "Yu rikɔmɛnd fɔ yuz spɛshal kayn glas fɔ layt sɛnsitiviti?"
- "Aw a go ɛp mi pikin na skul?"
Yu tink se di Sanflawa Sindrom gɛt fɔ du wit di Jeavons Sindrom?
Sanflawa Sindrom ɛn Jeavons Sindrom na tu kayn sik dɛn we fiba . Sunflower Syndrome na wan kayn epilepsy bak we kin kam wit aylid myoclonia. Insay dis, pɔsin kin tɔn to brayt layt sɔs (lɛk di san layt) ɛn wev in an bifo in yay. Dis kin mek di layt chenj ɛn mek yu gɛt sik.
Fɔ dɔn, tin dɛn fɔ mɛmba (Take-Home Message) .
Sɔntɛnde, wi kin fɔgɛt aw layt impɔtant to wi ɛvride layf. Layt de ɛp wi fɔ si na dak ɛn fɔ mek plant dɛn gro, fɔ ɛgzampul. Bɔt fɔ pɔsin we gɛt di sik we dɛn kɔl Jeavons Syndrome, layt kin mek i gɛt sik . Dɔktɔ kin ɛp fɔ kɔntrol aw layt kin afɛkt yu pikin. Dɛn kin gi yu mɛrɛsin ɛn spɛshal lens fɔ kɔba di yay.
Mɛmba:
- Jeavons Syndrome na wan sik we nɔ kin apin so ɔltɛm bɔt we pɔsin kin ebul fɔ kɔntrol .
- Di men sayn dɛm na we yu de blink wantɛm wantɛm, yu de fil lɛk layt, ɛn yu de fred fɔ si .
- Pan ɔl we dis na sik we pɔsin kin gɛt fɔ ɔl in layf, dɛn kin kɔntrol am wit mɛrɛsin ɛn chenj di we aw pɔsin de liv in layf .
- Yu fɔ mɛmba yu pikin in maynd wɛlbɔdi bak . Aks pɔsin we sabi du in wok if nid de.
- If yu sik we de te pas 5 minit ɔ yu gɛt siriɔs sik na imejensi! Go to dɔktɔ wantɛm wantɛm.
A op se dis infɔmeshɔn dɔn ɛp yu fɔ ɔndastand sɔm tin bɔt dis sityueshɔn. A de wish yu pikin fɔ wɛl kwik kwik wan!
` Jevons sindrom, epilepsy, siiz, aylid myoklonus, pikin dεm, fכtosεnsitiviti, EEG
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