Ngaba umntwana wakho unazo ezi mpawu zingaqhelekanga? Masifunde ngesifo se-multiple sclerosis ebuntwaneni (MS)!

Ngaba umntwana wakho omncinci ngequbuliso unengxaki yokuhamba? Okanye ngaba umbono wakhe awucacanga okanye awucacanga? Ngamanye amaxesha ezi zizinto ezincinci ezivelelayo. Nangona kunjalo, kwiimeko ezingaqhelekanga, ezi mpawu zinokuba ziimpawu zokuqala zesifo esingathethi kakhulu ngaso, kodwa kubaluleke kakhulu ukuba siziqaphele. Namhlanje siza kuthetha ngenye yeemeko ezinjalo, ebizwa ngokuba yi-'Multiple Sclerosis' okanye 'MS', echaphazela abantwana abangaphantsi kweminyaka eli-18. Ungakhathazeki, siza kuthetha ngale nto ngokulula, ngendlela onokuyiqonda.

Yintoni i-"multiple sclerosis (MS)" ephuhliswa ngaba bantwana?

Ngamafutshane, esi sisifo esibangelwa kukungasebenzi kakuhle kwenkqubo yokuzikhusela komzimba. Inkqubo yokuzikhusela yomzimba wethu ifana nomkhosi okhusela ilizwe. Umsebenzi wawo kukukhusela imizimba yethu ngokulwa neentsholongwane nezifo ezivela ngaphandle. Nangona kunjalo, kumntwana one-'MS', le nkqubo yokuzikhusela yomzimba yenza impazamo encinci. Iqala ukuhlasela iiseli eziphilileyo zomzimba wayo.

Ukuchaneka, olu hlaselo lujolise kwiNkqubo yeNervous yomntwana. Oko kukuthi, ingqondo kunye nomqolo. Imithambo-luvo esebuchotsheni kunye nomqolo inesigqubuthelo esikhuselayo esijikelezileyo, njengesigqubuthelo seplastiki esijikeleze ucingo lombane. Esi sigqubuthelo sibizwa ngokuba yi-"Myelin." "Myelin" yiyo evumela imiyalezo ukuba ihambe ngokukhawuleza nangokuthe ngcembe kwimithambo-luvo.

Kwi-MS, inkqubo yomzimba yokuzikhusela ihlasela kwaye yonakalise ezi seli ze-myelin. Kufana nokuba i-sheath yentambo yombane inqunyulwa kwiindawo ezithile. Oku kubangela ukuba imiyalezo yemithambo-luvo evela ebuchotsheni iye kuwo wonke umzimba ivalwe okanye iphazamiseke.

Ukonakala kwale myelin kubangela iimpawu ezinjengobuthathaka bemisipha, ukudinwa, ukulahlekelwa yinkumbulo, ubunzima bokuhamba, kunye notshintsho ekuboneni.

Khawucinge nje, umntwana wakho unomhlobo ogama linguNilanthi. UNilanthi ngequbuliso uqala ukuva iintlungu kwelinye iliso, aze abone kancinci. Kuphela xa ebonisa ugqirha oko apho afumanisa khona ukuba kunokuba luphawu lokuqala lwe-MS.

Okwangoku akukho nyango lwe-MS. Nangona kunjalo, kukho unyango olusebenzayo lokulawula iimpawu kunye nokunciphisa ukukhubazeka kwexesha elide okubangelwa sisifo. Ngoko ke akukho mfuneko yokukhathazeka.

Ziziphi iintlobo ze-MS ezenzeka ebantwaneni?

Uhlobo oluqhelekileyo lwe-MS ebantwaneni yi -``Relapsing-Remitting MS (RRMS) ``. Malunga ne-98% yabantwana banalo olu hlobo. Kwimeko enjalo, iimpawu zivela ngequbuliso (ukuqhambuka/ukubuyela umva), zihlala okwethutyana, emva koko zinciphe okanye zinyamalale ngokupheleleyo (ukuxolelwa). Zisenokubuya emva kwexesha elithile. Ngale ndlela, iimpawu ziyavela zihambe ubomi bomntwana.

Olunye uhlobo yi -`Primary Progressive MS (PPMS)`.Oku akuvamile kakhulu ebantwaneni. Okwenzekayo kukuba iimpawu ziya ziba mandundu kancinci kancinci ngokuhamba kwexesha. Akukho phuculo lingako phakathi kwamaxesha okukhulelwa.

Ziziphi iimpawu zokuqala ze-MS kubantwana?

Xa bexilonga i-MS, oogqirha banikela ingqalelo ekhethekileyo kwezi mpawu zokuqala:

• I-Optic Neuritis: Le yimeko ebangela intlungu kwelinye okanye omabini amehlo, kunye nokulahlekelwa ngumbono. Ngokukodwa, umthambo wokubona ongaphakathi kweliso uyavuvukala. Abanye abantwana banokuba notshintsho kwindlela ababona ngayo imibala.
• I-Transverse Myelitis: Oku kwenzeka xa ukudumba kwinxalenye yomqolo kubangela amanxeba, kuthintele imiqondiso yemithambo-luvo. Oku kunokubangela iimpawu ezinjengobuthathaka kwimilenze, ukungaziva mnandi, kunye nokungakwazi ukuhamba.

Khawucinge nje, mntwana wakho, masithi igama lakhe nguKavindu. Ngenye imini, xa uKavindu ebuya esikolweni, uthi, "Mama, imilenze yam ayiziva inamandla." Emva kwexesha elithile, ukufumanisa kunzima ukuhamba. Oku kusenokuba kungenxa ye-Transverse Myelitis.

Ziziphi iimpawu eziqhelekileyo ze-MS ebantwaneni?

Iimpawu ze-MS zinokwahluka kumntu nomntu. Kwanakumntwana omnye, iimpawu zinokwahluka imihla ngemihla. Asinguye wonke umntu oza kuba nazo zonke ezi mpawu, kodwa ngokuqhelekileyo zimbalwa kuphela eziza kubonakala.

• Ukuba ndindisholo, ukurhawuzelela (i-paresthesia) : Olu luvo lunokwenzeka kwiindawo ezifana nezandla, iinyawo, nobuso.
• Isiyezi
• Ubunzima bokuhamba okanye ukugcina ibhalansi
• Ukudinwa: Oku akukokudinwa nje okuqhelekileyo. Kukuvakalelwa kukudinwa nokuba ulala kangakanani na.
• Ubuthathaka bemisipha
• Ukungcangcazela/ukungcangcazela
• Iingxaki zokugxila okanye inkumbulo
• Iingxaki zokubona: njengokubona okufipheleyo okanye ukubona kabini.

Ukuba nje unenye okanye ezimbini kwezi mpawu, musa ukucinga ukuba yi-MS. Nangona kunjalo, ukuba ezi mpawu ziyaqhubeka okanye umntwana wakho unengxaki, kubalulekile ukufuna ingcebiso kagqirha.

Yintoni ebangela ukuba abantwana babe ne-MS?

Eyona nto ibangela i-MS kukususwa kwemyelin . Sithethe ngaphambili nge-myelin sheath. Ukususwa kwemyelin kukonakala kwe-myelin sheath.

Ngasizathu sithile, inkqubo yomzimba yomntwana wethu yokuzikhusela iphosa le ndawo iphilileyo ebizwa ngokuba yi-'Myelin' njengento eyingozi emzimbeni. Emva koko iqala ukuyihlasela. Olu hlaselo lonakalisa i-'Myelin'. Amanxeba (abizwa ngokuba yi-'lesions' okanye 'i-'plaques' ngoogqirha) anokwakheka kwezi ndawo zonakeleyo. La manxeba anokubonwa ngeeskeni ezifana ne-'MRI (Magnetic Resonance Imaging)'.

Xa i-myelin yonakele, ukudluliselwa kwemiyalezo esuka ebuchotsheni iye kwiindawo ezahlukeneyo zomzimba kuyaphazamiseka. Yiloo nto ebangela iimpawu ze-MS.

Abaphandi abakayazi kakuhle ukuba kutheni inkqubo yomzimba yokuzikhusela iziphatha kakubi ngolu hlobo.

Ziziphi izinto ezibangela umngcipheko kubantwana abanesifo se-MS?

Kufunyaniswe ukuba izinto ezithile ezichaphazela umama ngexesha lokukhulelwa zinokwandisa umngcipheko wokuba umntwana wakhe abe ne-MS:

• Ukuchatshazelwa zizinto ezinobungozi: Umzekelo, ukuchatshazelwa ngumsi osetyenziswa ngabanye abantu, izibulali-zinambuzane, njl.
• Amanqanaba aphantsi e-vitamin D egazini.
• Ukuchatshazelwa zizifo ezithile zentsholongwane: Umzekelo, i-Epstein-Barr virus okanye i-mononucleosis (ekwaziwa ngokuba sisifo sokuqabulana).
• Ukutyeba kakhulu.

Kungoko ke, kubaluleke kakhulu ukuhlala usempilweni ngexesha lokukhulelwa. Ukulandela iingcebiso zonyango kunokunciphisa ezi ngozi.

Ziziphi iingxaki ezinokubakho kwi-MS yobuntwana?

Abantwana banokuba neengxaki ezithile ngenxa ye-MS. Ezi azibonakali kwangoko, kwaye zinokuchaphazela kuphela xa befikelela ebudaleni.

• Ubunzima bokuhamba ngaphandle koncedo.
• Ukudakumba kunye nokuxhalaba.
• Ubunzima bokwenza umsebenzi wesikolo.
• Ukungasebenzi kakuhle kwezandla.
• Ubunzima bokulawula umchamo okanye isitulo (ukungakwazi ukuzibamba).

Ayizizo zonke ezi zinto ezichaphazela wonke umntwana, kodwa kubalulekile ukuba uzazi ezi zinto ukuze ufumane uncedo ngokukhawuleza xa lufuneka.

Oogqirha bayixilonga njani i-MS ebantwaneni?

Ugqirha uxilonga umntwana one-MS ngokwenza uvavanyo lomzimba, uvavanyo lwemithambo-luvo, kunye nezinye iimvavanyo ezikhethekileyo . Ngexesha lovavanyo, ugqirha uza kukubuza imibuzo malunga neempawu zomntwana wakho kunye nokuba kukho nabani na kusapho lwakho okhe waba nesi sifo.

Uvavanyo lokuxilonga lukwanceda ekuthinteleni ezinye iimeko ezineempawu ezifanayo neze-MS. Ezi vavanyo ziquka:

• Uvavanyo lwegazi kunye novavanyo lomchamo.
• Uvavanyo lokufota olufana ne-MRI (Magnetic Resonance Imaging) scans (kukwakho novavanyo olujonga imithambo-luvo yeliso, olufana ne-Optical Coherence Tomography).
• Ukubhoboza eLumbar:Kule meko, kuthathwa ulwelo olujikeleze umqolo luze luhlolwe.
• Uvavanyo lwe-Evoked Potential (EP): Olu lulinganisa isantya imiyalezo ehamba ngaso kwimithambo-luvo.

Ngenxa yokuba iimpawu ze-MS zifana nezezinye izifo ezininzi, kungathatha ixesha ukufumanisa imeko echanekileyo. Oku kunokuba yingxaki kubazali, kwaye kunokufuna ukutyelela ugqirha izihlandlo ezininzi. Nangona kunjalo, xa sele kufunyenwe ukuxilongwa ngokuchanekileyo, kunokwenzeka ukunyanga umntwana wakho ngokufanelekileyo kwaye umncede abe nobuntwana obonwabisayo nobungenasiphazamiso.

Ngaba abantwana abancinci bayakwazi ukuyibona i-'MS'?

Iimpawu ze-MS azibonakali xa umntwana ezalwa. Ngenxa yoko, akunakwenzeka ukuba umntwana afunyanwe ene-MS. Iimpawu ziyabonakala njengoko umntwana ekhula. Le meko idla ngokuqala ngexesha lokufikisa. Izihlandlo ezininzi, esi sifo sifunyaniswa ngaphambi kokuba sifikelele kwiminyaka eli-16 ubudala.

Iphathwa njani i-MS ebantwaneni?

Unyango oluphambili lwe-MS ephinda ibuyele kwi-relapsing-remitting (RRMS), oluqheleke kakhulu ebantwaneni, lunyango lokuguqula izifo (DMT). La mayeza e-DMT alawula ukuqhubela phambili kwesi sifo kwaye anciphise ukuphindaphindeka kweempawu. Elinye iyeza elivunyiweyo yi-FDA (Food and Drug Administration) lipilisi ebizwa ngokuba yi -fingolimod . Licetyiswa kubantwana abaneminyaka eli-10 nangaphezulu. Ezinye ii-DMTs zisafundwa ngoku ukuba zisetyenziswe ebantwaneni.

Ukongeza, oogqirha banyanga neempawu ezithile zomntwana. Ezi zingabandakanya:

• Unyango Lomsebenzi: Lunceda kwimisebenzi yemihla ngemihla.
• Unyango Lomzimba: Lunceda ekuphuhliseni amandla omzimba kunye nokulinganisela.
• Unyango lokuthetha: Ukuba unengxaki yokuthetha okanye yokuginya.
• Uvavanyo lwe-neuropsychological kunye nonyango: Inceda ngezinto ezifana nenkumbulo, ingqalelo, kunye nokufunda.

Ukuba esi sifo sichaphazele inkumbulo yomntwana kunye nobuchule bakhe bokucinga (umsebenzi wokuqonda), inkxaso eyongezelelweyo inokufuneka esikolweni.

Usenokufumana ithuba lokuthatha inxaxheba kwiimvavanyo zeklinikhi ezivavanya unyango olutsha. Ugqirha wakho uza kukuxelela okungakumbi ngale nto.

Ndifanele ndimbone nini ugqirha womntwana wam?

Ukuba umntwana wakho ukuxelela ngokundindisholo, utshintsho ekuboneni, okanye naziphi na ezinye iimpawu ezingaqhelekanga, kubalulekile ukuthetha nogqirha womntwana wakho ngoko nangoko. Ukufunyanwa kwangethuba kwe-MS yeyona nto ingcono. Oogqirha banokumhlola umntwana wakho baze bamisele eyona ndlela ifanelekileyo yokufumanisa isifo.

Emva kokuba isifo sifunyenwe, wena okanye umntwana wakho kufuneka wazise iqela lezonyango ukuba kukho naziphi na iimpawu ezintsha ezibonakala okanye ukuba iimpawu ziya zisiba mandundu ngequbuliso (ukuqhambuka).

Liyintoni ikamva labantwana abane-MS yobuntwana?

Abantwana abafunyaniswe bene-MS ngokubanzi banokuba nethemba elihle ngekamva. Kukho unyango lokunciphisa ukuphindaphindeka nobukhali beempawu. Ukuthintela ukukhubazeka kwexesha elide, esi sifo kufuneka silawulwe ubomi bonke. Umntwana wakho kuya kufuneka adibane neqela lakhe lezonyango le-MS rhoqo ebomini bakhe bonke.

Abanye abantwana abane-MS ephinda ibuyele kwi-relapsing-remitting (RRMS) banokuba nesifo esibizwa ngokuba yi-secondary progressive MS (SPMS) xa bebadala. Kulapho ke iimpawu ziba mandundu kancinci kancinci. Nangona kunjalo, uphando lubonise ukuba abantu abafunyaniswe bene-MS ebuntwaneni banesantya esiphantsi sokukhula kwesifo kunabo bahlakulela i-SPMS xa bebadala.

Ngaba i-MS iya kuchaphazela ubomi besikolo somntwana wam?

Ngenxa yokuba i-MS inokuchaphazela inkumbulo yomntwana kunye nezakhono zakhe zokucinga (umsebenzi wokuqonda), umntwana unokujongana nemingeni emsebenzini wesikolo. Ke ngoko, licebo elihle ukuba ubuncinane uvavanyo olunye lwe-neuropsychological. Emva koko, kubalulekile ukuthetha nootitshala bomntwana rhoqo. Ungafumana inkxaso yokunceda umntwana ukuba aqhubele phambili ngesantya sakhe kwaye afikelele kwiinjongo zakhe zemfundo.

Abantwana abaninzi abane-MS baqhelene kakuhle nabanye abantwana abaneminyaka yabo. Banokudlala baze bathathe inxaxheba kwimisebenzi njengabanye abantwana.

Ukuba unemibuzo, ugqirha uza kukunika ingcebiso malunga nokuba imisebenzi ethile ikhuselekile na kumntwana.

Njengomzali, usenokuba nexhala kakhulu xa ufumanisa ukuba umntwana wakho une-MS. Yinto eqhelekileyo leyo. Kodwa khumbula, uninzi lweemeko ze-MS ezichaphazela abantwana yi-relapsing-remitting (RRMS). Oku kuthetha ukuba iimpawu ziyafika zihambe. Ugqirha unokwenza isicwangciso sonyango ukunciphisa ukuphindaphindeka kunye nobukhali beempawu. Nangona i-MS sisifo sobomi bonke esingenanyango, ukuba ilawulwa kakuhle, ungamnceda umntwana wakho adlale aze afunde ngokuphazamiseka okuncinci.

Umyalezo Wokuya Ekhaya

• I-MS yobuntwana yimeko apho inkqubo yomzimba yokuzikhusela ihlasela i-myelin kwinkqubo yemithambo-luvo.
• Iimpawu ziyahluka, kwaye zinokubandakanya iingxaki zokubona, ukuba ndindisholo, ubunzima bokuhamba, kunye nokudinwa.
• Esi sifo singalawulwa ngokufunyanwa kwangethuba kunye nonyango olufana ne-'DMT'.
• Umntwana usenokufuna inkxaso eyongezelelweyo esikolweni nakwimpilo yemihla ngemihla, kodwa uninzi lwabantwana lunokuphila ubomi obuqhelekileyo.
• Ukuba umntwana wakho uneempawu ezingaqhelekanga, funa ingcebiso kagqirha ngoko nangoko. Musa ukoyika, ngolwazi olufanelekileyo kunye nenkxaso, ungamelana nale meko.

"I-MS yobuntwana, i-Multiple Sclerosis, iNkqubo yeNervous, i-Myelin, iNkqubo yoKhuseleko loMzimba, iimpawu, unyango