Nokuba umntwana wakho utya kangakanani na, ngaba uthi, "Andihluthi, ndifuna okungakumbi?" Ngaba wakha wambona ehlala ecinga ngokutya, ekhangela ukutya, kwaye ngamanye amaxesha efihla ukutya xa kungekho mntu? Oku kunokuba yingxaki enkulu kwaye kube lusizi kumama okanye utata okubonayo. Uninzi lwexesha, sicinga ukuba oku kukunyoluka kokutya komntwana. Kodwa oko akusoloko kunjalo. Unobangela wale ndlala igqithisileyo usenokuba yimeko engaqhelekanga yemfuza ebizwa ngokuba yiPrader-Willi Syndrome . Namhlanje, siza kuthetha ngale nto, indlala egqithisileyo ehamba nayo ('hyperphagia'), kunye nonyango lwayo ngendlela elula neyobuhlobo.
Yintoni iPrader-Willi Syndrome?
Ngamafutshane, iPrader-Willi Syndrome sisifo esingaqhelekanga semfuza esibangelwa kukutshintsha kwe-DNA yethu. Ngamanye amaxesha, sinokubangelwa kukwenzakala okukhulu entloko.
Le meko ichaphazela kakhulu i-hypothalamus, inxalenye yengqondo yethu. Cinga nge-hypothalamus njengotshintsho emzimbeni wethu. Xa sisitya size sizive sihluthi, le nxalenye isithumela umyalezo othi "Kulungile, kwanele." Kodwa engqondweni yomntu onePrader-Willi Syndrome, olu "tshintsho" alusebenzi kakuhle. Ngenxa yoko, nokuba batya ukutya okungakanani na, abaziva behluthi.
Yiyo loo nto aba bantwana behlala belambile. Asikuko ukuba netyala, kwaye asikuko nokubawa. Yinxalenye yesifo ngokwaso.
Ngenxa yokulamba rhoqo ('hyperphagia'), bahlala befuna ukutya.
- Batya ukutya okuninzi kakhulu kunomntu oqhelekileyo.
- Bafihla ukutya ukuze bakutye kamva.
- Kwezinye iimeko ezingaqhelekanga, usenokulingeka ukuba utye ukutya okukhenkcezisiweyo, mhlawumbi nokutya okuphuma kwinkunkuma.
Ukuba le meko ayilawulwa, umngcipheko wokuba nokutyeba kakhulu kunye nezinye iingxaki zempilo ezinxulumene noko (ezifana nesifo seswekile nesifo sentliziyo) uphezulu kakhulu.
Ngaba ikho indlela yokunyanga le ndlala igqithisileyo?
Ewe. Kukho amayeza anokunceda ukulawula le ndlala igqithisileyo. I-Vykat XR (i-diazoxide choline) yenye yamayeza anjalo. Eli yeza lisebenza ngokuchaphazela iihomoni kunye nee-neurotransmitters engqondweni yethu ezilawula indlala kunye nomdla wokutya, zinciphisa loo mvakalelo ingapheliyo yendlala.
Kodwa eli asiloyeza elinokuthatyathwa ngokungxama. Olu nyango lufanele luqalwe kuphela phantsi kweliso lengcali.
Ulisebenzisa njani eli yeza?
Le yipilisi edla ngokuthathwa kube kanye ngemini. Ingathathwa nokutya okanye ngaphandle kokutya. Nangona kunjalo , ipilisi kufuneka iginywe yonke ngaphandle kokuqhekeka, ukutyumza, okanye ukuhlafuna.
Ugqirha wakho uza kukuqalisa ukusebenzisa eli yeza ngedosi ephantsi kakhulu. Emva koko, rhoqo emva kweeveki ezimbini, baya kunyusa idosi kancinci kancinci. Oku kubizwa ngokuba yi-'titration.' Oku kwenzelwa ukufumana idosi yokugcina esebenza kuwe kwaye elawula ngcono iimpawu zakho. Ukuba awukwazi ukusela iyeza kangangeveki okanye ngaphezulu, ugqirha wakho angakuqalisa kwakhona ngedosi ephantsi aze ayinyuse kancinci kancinci.
Uyazi njani ukuba iyeza liyasebenza?
Njengoko eli yeza liqala ukusebenza, wena okanye umntwana wakho niya kuqaphela ukuba izinto ezifana nokunqwenela ukutya rhoqo, ukunqwenela ukutya, kunye nendlala egqithisileyo ziya kuncipha kancinci kancinci. Ekubeni kuthatha ixesha ukuba eli yeza lisebenze ngokupheleleyo, musa ukulindela utshintsho olukhulu kwiiveki ezimbalwa zokuqala.
Nangona kunjalo, ukuba umdla wakho awukaphucuki nangona usele amayeza, qiniseka ukuba uthetha nogqirha wakho ngawo. Usenokukwazi ukuyeka amayeza okanye acebise olunye unyango ukuba kuyimfuneko.
Zeziphi iziphumo ebezingalindelekanga eziqhelekileyo kwaye yintoni enokwenziwa ngazo?
Njengayo nayiphi na iyeza, linokubangela iziphumo ebezingalindelekanga. Kodwa ayinguye wonke umntu ozifumanayo. Makhe sijonge ezona ziphumo bezingalindelekanga ziqhelekileyo kunye nendlela yokuzilawula.
| Imiphumela | Indlela yokulawula |
|---|---|
| Ukukhula kweenwele emzimbeni ngokugqithisileyo (hypertrichosis) | Oku kudla ngokulawulwa. Ungasebenzisa iindlela zokususa iinwele ukuba kuyimfuneko. Nangona kunjalo, ukuba kunzima kakhulu ukulawula, thetha nogqirha wakho. |
| Ukudumba okubangelwa kukuqokelelana kolwelo emzimbeni (i-edema) | Ukuba ufumana iimpawu ezinje ngokudumba kwemilenze, amaqatha, okanye iinyawo, okanye ubunzima bokuphefumla , xelela ugqirha wakho ngoko nangoko . Ugqirha wakho unokufuna ukuyeka amayeza okwethutyana, anciphise umthamo, okanye anike amanye amayeza, anje nge-diuretics. |
| Amanqanaba eswekile egazini anyukileyo | Le yinto ekufuneka uyiqaphele. Ugqirha wakho uza kujonga amanqanaba eswekile yakho yegazi rhoqo ngaphambi kokuba uqale ukuthatha amayeza nangexesha uwasebenzisa. Ukuba kuyimfuneko, unganikwa amanye amayeza okunceda ukulawula iswekile yakho yegazi. |
| Irhashalala lolusu | Sebenzisa isepha ezingenavumba, ezithambileyo. Ukuba kukho ukurhawuzelela, amafutha okugcoba angafakwa njengoko kuyalelwe ngugqirha. Ukuba ukurhawuzelela kuyanda okanye akupheli, yazisa ugqirha wakho. |
Iimeko ezinzima ezifuna ukhathalelo olukhethekileyo!
Sixelelwe ukuba eli yeza linokubangela amazinga aphezulu eswekile egazini. Kwiimeko ezingaqhelekanga, oku kunokukhokelela kwimeko eyingozi kakhulu ebizwa ngokuba yiDiabetic Ketoacidosis (DKA) . Oku kwenzeka xa izinto eziyingozi ezibizwa ngokuba zii-ketones ziqokelelana egazini kuba umzimba ungenayo i-insulin eyaneleyo. Le yingxamiseko yezonyango.
Iimpawu zezinga eliphezulu leswekile:
- Ukuziva unxaniwe ngokungaqhelekanga
- Ukuchama rhoqo
- Ndiziva ndilambile kakhulu kunesiqhelo
- Ukunciphisa umzimba ngokungeyomfuneko
Iimpawu ezilumkisayo zeDiabetic Ketoacidosis (DKA):
- Isicaphucaphu okanye ukuhlanza
- Isisu esibuhlungu
- Ukudinwa kakhulu okanye ukudideka
- Ubunzima bokuphefumla
- Ivumba elimnandi leziqhamo emlonyeni
- Ukuba namanqanaba aphezulu kakhulu eswekile egazini (umz., angaphezu kwama-300 mg/dL)
Ukuba unayo nayiphi na kwezi mpawu, bonana nogqirha ngokukhawuleza ngaphandle kokulibazisa. Okanye, yiya kwiSebe leNgxamiseko (ETU) lesibhedlele esikufutshane. Oku kubaluleke kakhulu.
Qaphela indlela ezisebenzisana ngayo nezinye iziyobisi.
Amanye amayeza owasebenzisayo anokuchaphazela indlela esebenza ngayo iVykat XR. Amanye amayeza anokunyusa iziphumo ebezingalindelekanga zeVykat XR, ngelixa amanye enokunciphisa ukusebenza kwayo.
Ngoko ke, xelela ugqirha wakho ngokucacileyo malunga nawo onke amayeza owasebenzisayo wena okanye umntwana wakho (kuquka amayeza kagqirha, amayeza athengiswa ngaphandle kwemvume kagqirha, iivithamini, amayeza esintu, iimveliso zezityalo). Uza kulungisa idosi okanye atshintshe amayeza ukuba kuyimfuneko. Musa ukuqala okanye ukuyeka naliphi na iyeza ngaphandle kokubuza ugqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Prader-Willi Syndrome sisifo esingaqhelekanga semfuza esibangela ukuphelelwa yimvakalelo yokugcwala.
- Qonda ukuba ukulamba kakhulu komntwana wakho nokufuna ukutya akusilo ityala lakhe, kodwa luphawu lwesifo ngokwaso.
- Amayeza afana neVykat XR anokulawula le ndlala igqithisileyo, kodwa kufuneka kusoloko kwenziwa phantsi kweliso lengcali .
- Hlala uqaphela iziphumo ebezingalindelekanga, ingakumbi iimpawu zeswekile ephezulu egazini. Ukuba ubonakalisa iimpawu zeDiabetic Ketoacidosis (DKA), yiya kwiSebe lezeMpilo eziNgxamisekileyo (ETU) esibhedlele ngoko nangoko.
- Kubaluleke kakhulu ukwazisa ugqirha wakho malunga nazo zonke ezinye iziyobisi kunye nezongezelelo ozithathayo.
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