Koj tus me nyuam puas tau pib ntsais muag sai sai? Los yog lawv lub qhov muag puas tau pib dov rov qab thiab lawv lub taub hau zoo li lawv tab tom rov qab? Qee zaum qhov no tuaj yeem nrog rau qhov qaug dab peg me me. Ua ib tug niam txiv, nws yog ib qho ib txwm muaj kev ntshai thiab txhawj xeeb thaum koj pom ib yam dab tsi zoo li no. Hnub no peb yuav tham txog ib hom kab mob qaug dab peg uas tsis tshua muaj uas qhia cov tsos mob no, tab sis peb tsis hnov txog lawv ntau zaus. Qhov no hu ua Jeavons Syndrome, lossis Epilepsy With Eyelid Myoclonia.
Jeavons Syndrome yog dab tsi?
Hais yooj yim xwb, Jevons syndrome yog ib hom mob qaug dab peg uas tsis tshua muaj . Nws yog tus yam ntxwv los ntawm kev ntsais muag tam sim ntawd, lossis lub qhov muag ntswj. Qhov mob no feem ntau yog tshwm sim los ntawm kev hloov pauv ntawm lub teeb thiab kev nkag siab rau lub teeb . Qhov mob feem ntau pib thaum yau .
Koj yuav tsum tau ntshai heev thaum koj tus menyuam muaj thawj qhov qaug dab peg, thiab txhua zaus lawv muaj ib qho, puas yog? Yeej ib txwm muaj kev txhawj xeeb txog lawv txoj kev nyab xeeb. Txawm hais tias koj tus menyuam xav ua si, kawm, thiab zoo siab ib yam li lwm tus menyuam, nws yog ib qho ib txwm rau nej ob leeg xav tias tsis muaj zog txog qhov xwm txheej.
Tiamsis qhov xov xwm zoo yog tias muaj kev kho mob los tswj cov qaug dab peg no thiab tswj qhov cuam tshuam uas lawv tuaj yeem muaj rau koj thiab koj tus menyuam txoj kev noj qab haus huv ntawm lub hlwb . Jevons syndrome tsis yog ib qho mob uas ploj mus thaum tus menyuam loj hlob tuaj, nws yog ib qho mob uas yuav tshwm sim mus ib txhis . Yog li ntawd, tus menyuam yuav xav tau kev kho mob thiab kev saib xyuas kom zoo thoob plaws lawv lub neej.
Puas yog Jeavons Syndrome txaus ntshai?
Yog, Jeavons Syndrome tuaj yeem ua rau muaj kev phom sij rau qee kis . Qhov xwm txheej thiab qhov hnyav ntawm qhov qaug dab peg tuaj yeem muaj kev cuam tshuam loj rau tus menyuam txoj kev noj qab haus huv tag nrho. Vim tias peb tsis paub tias qaug dab peg yuav tshwm sim thaum twg, muaj feem ntau uas tus menyuam yuav poob tam sim ntawd thiab raug mob . Yog li ntawd, nws yog ib qho tseem ceeb uas yuav tsum nrhiav kev kho mob los ntawm kws kho mob thiab ua raws li cov lus qhia kom tus menyuam muaj kev nyab xeeb.
Tus mob no tsawg npaum li cas?
Kab mob Jeavons cuam tshuam rau ntawm 1% thiab 2% ntawm cov neeg uas kuaj pom tias muaj tus kab mob qaug dab peg. Kwv yees li ntawm 50 lab tus tib neeg thoob ntiaj teb raug kev txom nyem los ntawm tus kab mob qaug dab peg. Yog li xav txog seb muaj pes tsawg feem pua ntawm lawv muaj tus mob no.
Cov tsos mob ntawm Jeavons Syndrome yog dab tsi?
Muaj peb yam tseem ceeb ntawm Jevons syndrome:
1. Tus me nyuam lub qhov muag kaw los yog ntsais muag tas li vim yog cov leeg ntawm lub qhov muag qaug zog sai sai yam tsis xav tau ('Eyelid Myoclonia').Lub sijhawm no, tus menyuam lub taub hau thiab pob ntseg yuav poob rov qab. Qhov no yuav tshwm sim nrog lossis tsis muaj kev poob siab tam sim ntawd ('kev qaug dab peg tsis muaj zog'). Qhov no feem ntau kav ntev li ob peb feeb. Qhov no tuaj yeem tshwm sim ntau zaus hauv ib hnub, tab sis feem ntau pom thaum sawv ntxov thaum sawv .
2. Qaug dab peg uas ua rau lub qhov muag kaw (`Eyelid closure-elicited electroencephalographic paroxysms`) yog qaug dab peg uas tshwm sim los ntawm kev hloov pauv ntawm lub teeb lossis tsis tsaug zog. Qhov no yog thaum tus menyuam kaw lawv lub qhov muag thiab muaj cov qauv hluav taws xob tsis zoo hauv lub hlwb (`Eyelid closure-elicited electroencephalographic paroxysms`). Tus kws kho mob tuaj yeem nrhiav cov qauv no nrog kev kuaj ``EEG``.
3. Kev ua xua rau lub teeb. Lub teeb ci ntsa iab tuaj yeem ua rau qaug dab peg. Lub teeb ci ntsa iab lossis cov qauv teeb uas hloov pauv (piv txwv li, lub hnub ci ntsa iab los ntawm cov ntoo) tuaj yeem ua rau tsis xis nyob.
Xav txog seb, thaum koj tus menyuam tab tom ua si, nws lub qhov muag cia li ntsais muag sai sai thiab nws lub taub hau rov qab mus. Tom qab ob peb feeb, nws rov qab mus rau qhov qub. Yuav ua li cas ntxhov siab yog tias qhov no tshwm sim ntau zaus hauv ib hnub?
Ntxiv mus, tus me nyuam yuav muaj kev co tes thiab ceg tam sim ntawd ('Myoclonic seizures') lossis kev co tag nrho lub cev uas tsis tuaj yeem tswj tau ('Grand mal' lossis 'Tonic-clonic seizures') . Txawm li cas los xij, cov no tsis tshua muaj.
Cov yam ua rau mob Jeavons Syndrome yog dab tsi?
Cov tsos mob no feem ntau yog tshwm sim los ntawm cov teeb ci ntsa iab, teeb ntsais ntsais lossis teeb ntsais ntsais .
- Teeb strobe zoo li teeb disco
- Ib lub teeb uas yuav tsum tau hloov (rau, tawm)
- Lub hnub mam li tshwm sim los ntawm cov huab
- Lub teeb ci ntsa iab rau saum npoo dej
- Cov qauv teeb uas hloov pauv thaum lub tsheb tsav hla cov ntoo
Tej yam no tuaj yeem ua rau qaug dab peg. Yog li ntawd , zam qee qhov teeb pom kev zoo lossis tiv thaiv koj tus menyuam lub qhov muag ntawm kev hloov pauv ntawm lub teeb tuaj yeem pab txo qhov zaus ntawm cov tsos mob no.
Cov tsos mob ntawm Jeavons Syndrome pib muaj hnub nyoog li cas?
Cov tsos mob no feem ntau pib thaum yau . Lub hnub nyoog nruab nrab ntawm kev pib mob yog ntawm 1 thiab 15 xyoos , tab sis feem ntau cov neeg mob tau tshaj tawm ntawm 6 thiab 8 xyoos .
Dab tsi ua rau muaj Jeavons Syndrome?
Qhov ua rau muaj tus mob Jevons syndrome no tseem tsis tau nkag siab tag nrho , tab sis kev tshawb fawb qhia tias muaj kev hloov pauv ntawm cov noob caj noob ces . Tau pom tias qee qhov kev hloov pauv hauv cov noob caj noob ces hauv qab no yuav ua rau muaj tus mob qaug dab peg no:
- `CHD2`
- `COL6A3`
- `KCNB1`
- `NAA10`
- `NEXMIF`
- `RORB`
- `SYNGAP1`
Qee qhov kev hloov pauv caj ces uas ua rau muaj tus mob no tseem tsis tau txheeb xyuas. Txoj kev uas txhua qhov kev hloov pauv caj ces raug xa mus los ntawm ib tiam mus rau ib tiam (kev txais qub txeeg qub teg) yuav txawv. Koj tuaj yeem nrhiav kev pab los ntawm tus kws pab tswv yim caj ces kom paub ntau ntxiv txog qhov no.
Leej twg muaj feem yuav mob no tshaj?
Txhua tus neeg tuaj yeem muaj tus mob Jeavons Syndrome. Txawm li cas los xij, qhov kev pheej hmoo siab dua yog tias ib tug neeg hauv koj tsev neeg muaj tus mob qaug dab peg . Kwv yees li 80% ntawm cov menyuam yaus uas kuaj pom tias muaj tus mob Jeavons Syndrome muaj ib tug txheeb ze uas kuj muaj tus mob qaug dab peg dav dav .
Tsis tas li ntawd xwb, tus mob no feem ntau tshwm sim ntawm cov ntxhais dua li cov tub hluas .
Cov teeb meem uas yuav tshwm sim ntawm Jeavons Syndrome yog dab tsi?
Kwv yees li ib ntawm tsib tus neeg uas kuaj pom tias muaj tus kab mob Jevons syndrome yuav muaj ntau zaus qaug dab peg tsis tuaj yeem ua ke, tsis muaj kev so ntawm nruab nrab. Qhov no hu ua eyelid myoclonic status epilepticus .
Qhov tseem ceeb tshaj plaws, tus kab mob qaug dab peg yog ib qho xwm txheej ceev uas ua rau tuag taus. Nws yuav tsum tau kho mob tam sim ntawd!
Yog tias koj tus menyuam muaj qaug dab peg uas kav ntev dua 5 feeb, lossis yog tias lawv muaj qaug dab peg ntau zaus sib law liag yam tsis muaj kev so ntawm ib nrab, hu rau 911 tam sim ntawd lossis coj koj tus menyuam mus rau chav kho mob ceev ze tshaj plaws.
Kab mob qaug dab peg kuj tseem muaj feem cuam tshuam loj heev rau kev noj qab haus huv ntawm tus menyuam . Tom qab qaug dab peg, tus menyuam yuav ntshai thiab tsis so. Kev ntxhov siab thiab kev nyuaj siab kuj yog ib qho uas tshwm sim nrog Jevons syndrome. Yog li ntawd, nws yog ib qho tseem ceeb uas yuav tsum saib xyuas tus menyuam txoj kev noj qab haus huv ntawm lub hlwb thiab, yog tias tsim nyog, nrhiav kev pab los ntawm tus kws pab tswv yim txog kev noj qab haus huv ntawm lub hlwb .
Yuav kuaj mob Jeavons Syndrome li cas?
Tus kws kho mob kuaj mob Jeavons Syndrome los ntawm kev xav txog cov kev kuaj thiab cov yam ntxwv no:
- Los ntawm kev ua qhov kev kuaj mob neurological.
- Los ntawm kev paub txog tus menyuam txoj kev noj qab haus huv thiab keeb kwm kev noj qab haus huv hauv tsev neeg (tshwj xeeb yog tus mob qaug dab peg).
- Los ntawm kev ua qhov kev kuaj EEG (Electroencephalogram - EEG).
Thaum lub sijhawm kuaj mob no, tus kws kho mob yuav nrhiav peb yam tsos mob tseem ceeb ntawm Jevons syndrome uas tau hais ua ntej. Nws kuj tseem yuav tshem tawm lwm yam mob uas yuav ua rau muaj cov tsos mob zoo sib xws kom thiaj li kuaj tau qhov tseeb.
Yuav kho tus mob Jeavons Syndrome li cas?
Jevons syndrome kho nrog cov tshuaj tiv thaiv qaug dab peg.Ntxiv rau, koj tus kws kho mob yuav pom zoo kom hnav cov iav tshwj xeeb los tswj cov tsos mob uas tshwm sim los ntawm lub teeb.
Cov tshuaj twg siv rau qhov no?
Koj tus menyuam tus kws kho mob yuav sau ib lossis ntau yam tshuaj tiv thaiv qaug dab peg hauv qab no (sau raws li cov tsiaj ntawv):
- Brivaracetam (Brivaracetam)
- Clobazam
- Ethosuximide
- Lacosamide
- Lamotrigine
- Levetiracetam (Levetiracetam)
- Vaj Huam Sib Luag `(Vaj Huam Sib Luag)`
- Topiramate
- Valproic acid (Valproic acid)
Txhua tus neeg teb rau cov tshuaj qaug dab peg sib txawv . Nws yuav siv sijhawm los nrhiav cov tshuaj zoo lossis kev sib xyaw ua ke ntawm cov tshuaj rau koj tus menyuam, thiab koj yuav tsum sim ntau yam tshuaj sib txawv . Qhov no tuaj yeem ua rau koj ntxhov siab thiab qee zaum ntev heev. Thaum lub sijhawm no, koj yuav tsum mus ntsib koj tus menyuam tus kws kho mob tsis tu ncua kom pom tias koj tus menyuam lub cev teb li cas rau cov tshuaj.
Tus kws kho mob kuj tseem yuav qhia koj txog tej yam tshwm sim ntawm cov tshuaj uas koj tus menyuam tau txais. Yog tias koj muaj lus nug txog kev kho mob uas tus kws kho mob pom zoo, nug.
Puas kho tau tus mob no los ntawm kev hloov tus menyuam txoj kev noj haus?
Tsis muaj kev noj zaub mov tshwj xeeb uas pom zoo rau tus mob Jeavons Syndrome. Tam sim no tsis muaj cov ntaub ntawv los txhawb kev siv cov zaub mov ketogenic los kho tus mob no.
Yav tom ntej ntawm ib tug me nyuam uas muaj tus kab mob Jeavons Syndrome yuav zoo li cas? (Kev kwv yees)
Lub neej yav tom ntej ntawm ib tug me nyuam uas muaj tus mob no yuav txawv nyob ntawm txhua tus me nyuam qhov teeb meem . Koj tus kws kho mob yog tus neeg zoo tshaj plaws uas yuav paub txog qhov no.
Tsis muaj kev kho rau Jevons syndrome, tab sis kev tshawb fawb ntxiv tau ua. Txawm hais tias nws yog ib qho mob uas yuav kav mus ib txhis, muaj kev kho mob los tswj kev qaug dab peg .
Puas yog Jeavons Syndrome cuam tshuam rau tus menyuam txoj kev txawj ntse?
Qaug dab peg thiab ntsais muag tuaj yeem cuam tshuam rau tus menyuam txoj kev kawm hauv chav kawm . Yog tias lawv tsis tuaj yeem qhib lawv lub qhov muag kom zoo, nws yuav nyuaj rau koom nrog hauv chav kawm tag nrho. Ntau tus menyuam uas muaj tus kab mob Jevons muaj teeb meem kawm ntawv hauv tsev kawm ntawv thiab tej zaum yuav xav tau kev txhawb nqa kev kawm ntxiv . Txawm li cas los xij, qhov xwm txheej no tsis cuam tshuam ncaj qha rau tus menyuam txoj kev txawj ntse .
Yog tias tus me nyuam muaj kev loj hlob qeeb, nws yuav yog ib qho cim qhia tias muaj ib qho ua rau muaj Jevons syndrome.
Puas yog Jeavons Syndrome cuam tshuam rau lub neej?
Kab mob Jeavons Syndrome tsis cuam tshuam ncaj qha rau tus menyuam lub neej . Lub neej ib txwm muaj peev xwm ua tau. Txawm li cas los xij, qhov hnyav ntawm qhov qaug dab peg thiab tus menyuam lub cev teb rau kev kho mob li cas tuaj yeem cuam tshuam rau tus menyuam txoj kev noj qab haus huv tag nrho. Tus kws kho mob tuaj yeem pab saib xyuas thiab tswj tus mob thoob plaws tus menyuam lub neej.
Kuv yuav tsum mus ntsib kws kho mob thaum twg?
Yog tias koj tus menyuam muaj qaug dab peg thawj zaug, hu rau cov kev pabcuam thaum muaj xwm txheej ceev tam sim ntawd lossis coj lawv mus rau tsev kho mob.
Yog tias koj lossis koj tus menyuam tau kuaj pom tias muaj Jeavons Syndrome, yog tias koj muaj qaug dab peg lossis cov tsos mob uas zoo li hnyav zuj zus, lossis yog tias koj muaj cov kev mob tshwm sim los ntawm kev kho mob, mus ntsib kws kho mob tam sim ntawd . Koj tus kws kho mob tuaj yeem pab koj thiab koj tus menyuam tswj hwm tus mob thiab teb koj cov lus nug.
Kuv yuav tsum nug tus kws kho mob li cas?
- "Kws kho mob/Niam, hom kev kho mob twg zoo tshaj plaws rau kuv tus menyuam?"
- Cov kev kho mob no yuav muaj tej yam tshwm sim tsis zoo li cas?
- "Koj puas pom zoo kom siv cov tsom iav tshwj xeeb rau kev rhiab lub teeb?"
- Kuv yuav pab kuv tus menyuam li cas hauv tsev kawm ntawv?
Puas yog Sunflower Syndrome muaj feem cuam tshuam nrog Jeavons Syndrome?
Kab Mob Paj Noob Hlis thiab Kab Mob Jeavons yog ob yam mob zoo sib xws . Kab Mob Paj Noob Hlis kuj yog ib hom kab mob qaug dab peg uas nrog los ntawm qhov muag myoclonia. Hauv qhov no, ib tus neeg yuav tig mus rau qhov chaw ci ntsa iab (xws li lub hnub ci) thiab co tes rau ntawm lawv lub qhov muag. Qhov no tuaj yeem ua rau muaj kev hloov pauv ntawm tus qauv teeb thiab ua rau qaug dab peg.
Thaum kawg, tej yam yuav tsum nco ntsoov (Cov Lus Coj Mus Tsev)
Qee zaum peb tsis nco qab tias lub teeb tseem ceeb npaum li cas rau peb lub neej txhua hnub. Piv txwv li, lub teeb pab peb pom kev hauv qhov tsaus ntuj thiab cog nroj tsuag. Tab sis rau ib tus neeg uas muaj Jeavons Syndrome, lub teeb tuaj yeem ua rau qaug dab peg . Tus kws kho mob tuaj yeem pab tswj hwm seb lub teeb cuam tshuam li cas rau koj tus menyuam. Lawv tuaj yeem sau tshuaj thiab tsom iav tshwj xeeb los npog qhov muag.
Nco ntsoov:
- Jeavons Syndrome yog ib qho mob qaug dab peg uas tsis tshua muaj tab sis tswj tau .
- Cov tsos mob tseem ceeb yog ntsais muag tam sim ntawd, rhiab rau lub teeb, thiab photophobia .
- Txawm hais tias qhov no yog ib qho mob uas yuav kav mus ib txhis, nws tuaj yeem tswj tau los ntawm kev siv tshuaj thiab kev hloov pauv hauv lub neej .
- Nco ntsoov txog koj tus menyuam txoj kev noj qab haus huv ntawm lub hlwb thiab . Yog tias tsim nyog, nrhiav kev pab los ntawm cov kws tshaj lij.
- Qaug dab peg ntev tshaj 5 feeb lossis qaug dab peg ntau zaus yog qhov xwm txheej ceev! Nrhiav kev kho mob tam sim ntawd.
Vam tias cov ntaub ntawv no tau pab koj nkag siab txog qhov teeb meem no. Kuv vam tias koj tus menyuam yuav zoo sai sai!
Jevons syndrome, qaug dab peg, qaug dab peg, qhov muag myoclonus, menyuam yaus, photosensitivity, EEG
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus