Ingabe ikhanda lomntwana wakho libonakala likhulu kunezinye izingane? Ake sixoxe nge-(Megalencephaly)!

Kungenzeka ukuthi uke waphawula ukuthi ikhanda lomntwana wakho likhulu kancane kunezinye izingane ezilingana naye, akunjalo? Mhlawumbe izigqoko namabhande ekhanda umntwana wakho agqoka mancane kangangokuthi kunzima ukuthola usayizi ofanele iminyaka yakhe. Ingabe lokhu kumane nje kuyingozi, noma kuyinto okufanele sikhathazeke ngayo? Namuhla sikhuluma ngesimo esibizwa ngokuthi "i-Megalencephaly", esaziwa nangokuthi "i-Macrencephaly", esingaba yinto ebalulekile kuwe ngesikhathi esinjengalesi.

Ngakho-ke iyini le "Megalencephaly"?

Kalula nje, i-"Megalencephaly" yisimo lapho ubuchopho bomntwana wakho buba bukhulu ngendlela engavamile . Lokhu kuvame ukuba khona lapho ezalwa. Okwenzekayo lapha ukuthi ubuchopho ngokwabo buba nzima kakhulu. Okusho ukuthi, ubuchopho bunesisindo esingaphezu kokulindelekile ngokweminyaka yengane kanye nosayizi womzimba wayo.

Esinye sezibonakaliso zokuqala zalokhu kungaba ikhanda elikhulu ngokungavamile. Ingane yakho ingase ingakwazi ukugqoka izigqoko noma amabhande ekhanda afanele iminyaka yayo ngoba mancane kakhulu.

Ukuba nobuchopho obukhulu ngezinye izikhathi kungathinta ukukhula kwengane. Lokhu kusho ukuthi ingase ibhekane nokubambezeleka kokukhula. Isibonelo, ingase yephuze kakhulu kunalokho obekulindelekile ukusho amazwi ayo okuqala, ukukhasa, noma ukuhamba.

Esikhathini esiningi, lesi simo esibizwa ngokuthi ``Megalencephaly`` siyenzeka kanye nezinye izimo zezokwelapha. Imbangela eyinhloko yalokhu ukushintshashintsha kwezakhi zofuzo.

Yiziphi izinhlobo eziyinhloko ze-`(Megalencephaly)`?

Kunezinhlobo ezintathu eziyinhloko zalesi simo:

1. I-Megalencephaly Eyinhloko: Lokhu kwaziwa nangokuthi i-Benign Familyal Megalencephaly noma i-Idiopathic Megalencephaly. Kulesi simo, ingane inobuchopho obukhulu, kodwa azikho ezinye izimpawu noma izinkinga zezinzwa. Ezimweni eziningi, oyedwa noma bobabili abazali bangase babe nekhanda elikhulu. Usayizi wekhanda lengane yakho ungakhula kancane kancane kuze kube yilapho eneminyaka engaba yizinyanga ezingu-18 ubudala, ngemva kwalokho lingase lizinze.

2. I-Metabolic Megalencephaly: Lokhu kubangelwa amaphutha esizalwa nawo e-metabolism, iqembu lezimo zofuzo ezithinta indlela imizimba yethu ecubungula ngayo ukudla.

3. I-Anatomic Megalencephaly: Lolu hlobo lubangelwa ukuguquka kwezakhi zofuzo okuthinta ukukhula kwesimiso sezinzwa sengane. Lokhu kubhekwa njengesifo sokukhula kwemizwa. Isimo esibizwa ngokuthi i-Megalencephaly sivame ukubhekwa njengophawu lwesifo esiyisisekelo kulolu hlobo.

Udokotela owelapha ingane yakho cishe uzonquma uhlobo lwe-megalencephaly ngokusekelwe kuhlangothi lobuchopho (hemisphere) olukhulu kunokulindelekile:

• I-Unilateral Megalencephaly (i-Hemimegalencephaly / i-Unilateral Megalencephaly):Okwenzekayo kulokhu ukuthi uhlangothi olulodwa lobuchopho luba lukhulu kunolunye.
• I-Bilateral Megalencephaly: Lokhu kuthinta izinhlangothi zombili zobuchopho. I-Bilateral isho ukuthi "izinhlangothi zombili."

Ziyini izimpawu zalesi simo?

Izimpawu ze-megalencephaly zingahluka. Ezinye izingane zingase zingabi nazimpawu futhi ikhanda likhulisiwe nje. Kodwa-ke, ezinye izingane zingase zibe nezimpawu ezifana nalezi:

• Ukulibaziseka kokukhula: Ukulibaziseka ezintweni ezifana nokukhuluma nokuhamba, njengoba sesishilo kakade.
• Isifo Sokuxhuzula (`Ukuxhuzula` / `Isifo Sokuxhuzula`): Lokhu kusho izimo ezifana nokuxhuzula.
• Izinkinga ze-neurological: Ukungasebenzi kahle kobuchopho kanye nomgogodla.

Ngezinye izikhathi, i-megalencephaly ingenzeka yodwa ngaphandle kwezimpawu. Ngezinye izikhathi, ingenzeka kanye nezinye izinkinga zezinzwa kanye nokukhubazeka kokuzalwa. Kulezi zimo, i-megalencephaly ibangelwa yileso sifo noma isimo esithile.

Ezinye izimpawu ezingase zibonakale yilezi:

• Ikhanda elikhulu noma elingalingani.
• Ukukhubazeka kwengqondo.
• Ubunzima bokunyakaza nokulinganisela.
• Ukuqina kwemisipha noma ubuthakathaka.
• Izinguquko embonweni.

Ngakho-ke, yini ebangela lokhu?

I-Megalencephaly ibangelwa yiphutha endleleni amangqamuzana obuchopho bomntwana wakho akhula ngayo. Kucatshangwa ukuthi ibangelwa kakhulu ukuhlukahluka kwezakhi zofuzo .

Inqubo lapho kwakheka khona ama-neuron amasha, noma amangqamuzana ezinzwa, emizimbeni yethu ibizwa ngokuthi `(ukwanda kwe-Neuron)`. Ngokuvamile, umzimba wethu ulawula le nqubo, ukhiqiza amangqamuzana ngenani elifanele, ngesikhathi esifanele. Kodwa enganeni ene-`(Megalencephaly)` lawa maseli akhiqizwa ngokweqile, noma awayi ezindaweni ezifanele. Lokhu kungenzeka ngenkathi ingane ikhula esibelethweni noma njengengxenye yesinye isimo sezokwelapha.

Yiziphi ezinye izifo ezingase zivele ngalesi simo?

I-Megalencephaly ingenzeka nezinye izifo eziningi kanye nama-syndromes, kuye ngohlobo lwayo kanye nemvelaphi yezakhi zofuzo.

Izifo ezihambisana ne-Anatomic Megalencephaly:

Lolu hlobo luvame ukubhekwa njengophawu lwezimo ezilandelayo:

• `(I-Achondroplasia)`
• `(i-Bannayan-Riley-Ruvalcaba syndrome)`
• `(I-Greig cephalo-polysyndactyly syndrome)`
• `(Isifo se-Opitz-Kaveggia)`
• `(Isifo sikaPretzel)`
• `(Isifo sikaSimpson-Golabi-Behmel)`
• `(Isifo sikaSotos)`
• `(I-Weaver syndrome)`

Izifo ezihambisana ne-Megalencephaly ye-Metabolic:

Ingane yakho ingase ibe ne-megalencephaly kanye namaphutha azalwa nawo e-metabolism. Lezi yizinkinga ngendlela umzimba ophula ngayo ukudla futhi usebenzise ngayo amandla. Lokhu kungafaka phakathi izimo ezifana nalezi:

• Ukungahambi kahle kwama-organic acid (`ama-organic acidurias`).
• Izifo ze-metabolic encephalopathy, njengesifo iCanavan kanye nesifo i-Alexander.
• Izifo zokugcina i-Lysosomal, njengesifo sikaTay-Sachs kanye nesifo sikaSandhoff.

Ubani osengozini enkulu yalokhu?

Isimo esibizwa ngokuthi ``Megalencephaly'' singathinta noma yimuphi umntwana. Kodwa sivame kakhulu kubafana . Kwezinye izimo, singatholakala ngofuzo emndenini wakho, noma singavela "ngokungahleliwe" ngaphandle kwesizathu esibonakalayo.

Lesi simo sitholakala kanjani? (`Ukuxilongwa`)

Udokotela wengane yakho angase asole ukuthi ine-megalencephaly ngemva kokuhlola ingane yakho nokwenza izivivinyo ezimbalwa. Lapho ehlola ingane yakho, udokotela uzolinganisa umjikelezo wekhanda lengane yakho nge-tape measure. Ngemuva kwalokho, bazoqhathanisa leso silinganiso namanani ajwayelekile obudala bengane, ubulili, nokuphakama kwayo.

Ngaphezu kwalokho, udokotela angase futhi acele ukuhlolwa kwezithombe, njenge-MRI, ukuze kubhekwe ubuchopho bengane futhi kutholakale noma yikuphi ukukhubazeka.

Cabanga ngalokhu: I-MRI ifana nokuthatha isithombe sengaphakathi lobuchopho. Ivumela udokotela ukubona kahle ukuma, usayizi, kanye nanoma yiziphi izinguquko ebuchosheni.

Uma udokotela wakho esola esinye isimo esiyisisekelo kanye ne-megalencephaly, kungadingeka enze izivivinyo ezengeziwe ukuqinisekisa ukuxilongwa. Lezi zivivinyo ezengeziwe zingafaka:

• Ukuhlolwa kwegazi.
• Ukuhlolwa komchamo.
• Ukuhlolwa kofuzo.

Lesi simo sivame ukutholakala nini?

Ngezinye izikhathi, abazali nodokotela bayaqaphela ukuthi ikhanda lomntwana likhulu ngokushesha ngemva kokuzalwa noma ezinyangeni ezimbalwa zokuqala. Lesi simo (i-megalencephaly) singakhula njengoba umntwana ekhula, ngokuvamile ngesikhathi sobuntwana kanye nobuntwana bokuqala.

Ngezinye izikhathi, ngisho nangesikhathi sokuhlolwa kwe-ultrasound ngesikhathi sokukhulelwa, kungatholakala i-underlateral megalencephaly (ukwanda kohlangothi olulodwa lobuchopho).

Yiziphi izindlela zokwelapha lokhu?

Okwamanje akukho ukwelashwa kwe-megalencephaly. Kodwa-ke, kunezindlela zokwelapha ezingasiza ingane yakho ukuthi ilawule izimpawu zayo. Kuye ngezimpawu zengane yakho, udokotela wakho angase ancome okulandelayo:

• Uma kukhona ukuxhuzula, kunikezwa imithi yokuvimbela ukuxhuzula noma, uma kudingeka , kwenziwe ukuhlinzwa kokuxhuzula .
• Ukubamba iqhaza ekwelashweni okufana nokwelashwa kwamehlo, ukwelashwa ngokomzimba, ukwelashwa ngokomsebenzi, noma ukwelashwa ngenkulumo.
• Ukubhalisa ezinhlelweni zokungenelela kusenesikhathi noma ezifundweni zemfundo ekhethekile esikoleni.

Obani abazoba seqenjini lokunakekela ingane yakho?

Ithimba lokunakekela eliqinile lizoba khona ukusiza ingane yakho ukuthi ilawule izimpawu ze-megalencephaly. Leli thimba lingafaka:

• Odokotela bezingane.
• Odokotela bezinzwa.
• Odokotela abahlinza izinzwa.
• Ochwepheshe bentuthuko.
• Abelaphi bokukhuluma, abomsebenzi kanye nabezomzimba.

Lizoba njani ikusasa lomntwana kulesi simo?

Umbono wengane yakho uncike ezintweni eziningi. Isibonelo, ukuthi izimpawu zimbi kangakanani nokuthi iyini imbangela eyinhloko. Ingane yakho ingase ingabi nezinye izimpawu ngaphandle kwekhanda elikhuliswe kancane. Noma, izimpawu zingathinta intuthuko yengane yakho. Isibonelo, ingadinga usizo olwengeziwe ngemisebenzi yansuku zonke noma ingadinga usizo lokufunda esikoleni.

Into ebaluleke kakhulu ukuthi ingane ngayinye ihlukile. Ngakho-ke, udokotela olapha ingane yakho kuphela ongakunikeza ulwazi olunembile kakhulu ngesimo sengane yakho kanye nekusasa layo.

Iyini isikhathi sokuphila nge-`(Megalencephaly)`?

Uma lesi simo singesibi kakhulu, okungukuthi, uma sincane, singase singabi nomthelela omkhulu esikhathini sokuphila kwengane. Kodwa-ke, kuye ngokuthi imbangela iyini, isibonelo, uma lesi simo sihambisana nesinye isimo esibucayi sezokwelapha, isikhathi sokuphila kwengane singase sibe sifushane kancane. Izimpawu ezinzima, njengesifo sokuwa, zingathinta nekusasa lengane. Udokotela wakho angakunikeza ulwazi ngesimo sengane yakho nokuthi yini ongayilindela njengoba ikhula.

Ingabe ikhona indlela yokuvimbela lesi simo?

Okwamanje ayikho indlela eyaziwayo yokuvimbela i-megalencephaly. Kodwa-ke, uma wazi ukuthi othile emndenini wakho unalesi simo noma unezinsolo ezinengqondo, ungakhuluma nomeluleki wezakhi zofuzo. Bangakusiza ukuthi uhlole ingozi yakho yokuba nengane ene-megalencephaly.

Kufanele ubonane nini nodokotela?

Uma ingane yakho inezimpawu ezintsha noma eziya ziba zimbi kakhulu ze-megalencephaly, tshela udokotela wengane yakho. Kubalulekile futhi ukugcina irekhodi lokukhula kwengane yakho nokwazisa udokotela wakho uma ingane yakho ingahlangabezani nezigaba zokukhula (isib., ukuhlala ingasizwa, ukukhuluma amagama okuqala) ngokweminyaka yayo.

Uma ingane yakho ihlushwa yi-seizure okokuqala, shayela izinsizakalo eziphuthumayo ngokushesha.

Uyini umehluko phakathi kwe-`(Macrocephaly)` kanye ne-`(Megalencephaly)`?

`(Macrocephaly)` ibizwa nangokuthi `(Megacephaly)` noma `(Megalocephaly)`, ngoba ubukhulu bekhanda bukhulu. Ku-`(Macrocephaly)`, ingane ingaba nekhanda elikhulu, kodwa akudingeki ukuthi kube nenkinga ngesakhiwo sobuchopho.

`(Megalencephaly)` (ubuchopho obukhulu) bungabangela `(Macrocephaly)` (ikhanda elikhulu). Kodwa-ke, `(Macrocephaly)` ingabangelwa futhi `(hydrocephalus)` noma `(hydrocephalus)`. Kalula nje, `(Megalencephaly)` iyimbangela eyodwa kuphela `(Macrocephaly)`.

Kuyini lokhu `(i-Megalencephaly-capillary malformation - MCAP)`?

I-Megalencephaly-capillary malformation (MCAP) yisimo esingavamile lapho kukhona ukukhula ngokweqile kwesikhumba, imithambo yegazi, izicubu ezixhumeneyo, kanye nezicubu zobuchopho.

Odokotela bavame ukuxilonga isimo `(MCAP)` lapho bezalwa. Izingane ezizalwa zine `(MCAP)` zinalezi zimpawu:

• Ubuchopho obukhulisiwe (`Megalencephaly`).
• Ikhanda elikhulu (`iMacrocephaly`).
• Ukukhubazeka kwemithambo yegazi emincane kakhulu - Lokhu kuyizinkinga zemithambo yegazi emincane kakhulu.

Kuyini lokhu `(Megalencephaly-polymicrogyria-polydactyly-hydrocephalus - MPPH)`?

I-Megalencephaly-polymicrogyria-polydactyly-hydrocephalus (MPPH) yisimo esithinta indlela ubuchopho bomntwana wakho obukhula ngayo. Bangase babe nobuchopho obukhulu (i-megalencephaly), futhi bungakhula ngokushesha phakathi neminyaka emibili yokuqala yokuphila. Lokhu kungathinta ukukhula, ukunyakaza, kanye nokuhlakanipha kwengane.

Okokugcina, into ebaluleke kakhulu! (Umyalezo Wokuya Ekhaya)

Uma ikhanda lengane yakho likhulu kakhulu kunomzimba wayo wonke, kuyinto evamile ukukhathazeka. Kungathatha isikhathi ukuthi ingane yakho iphakamise ikhanda layo yodwa noma yakhe amandla okuhlala iqonde. Ithimba lokunakekela ingane yakho lizokwenza izivivinyo ukuthola ukuthi kungani ubuchopho bengane yakho bukhulu kunalokho obekulindelwe.

Khumbula, ikhanda elikhulu alisho njalo inkinga enkulu. Kwezinye izimo, i-megalencephaly ilula futhi akukho okufanele ukhathazeke ngayo. Ngakolunye uhlangothi, ezinye izingane zingadinga usizo nokusekelwa impilo yonke ukuze zilawule izimpawu zazo. Lesi simo asithinti zonke izingane ngendlela efanayo. Funda kabanzi mayelana nokuxilongwa kwengane yakho nokuthi yini ongayilindela esikhathini esizayo.Ulwazi olunembile kakhulu ongaluthola luvela kudokotela owelapha ingane yakho. Ungesabi ukuyibuza imibuzo nokukhuluma ngakho konke okusengqondweni yakho.

I- Megalencephaly, i-Macrencephaly, ikhanda elikhulu, ikhanda lomntwana likhulu, ukukhulisa ubuchopho, izifo zezingane, izifo zofuzo, ukubambezeleka kokukhula