Kaya mwana wanu adya motani, kodi amanena kuti, "Sindikukhuta, ndikufuna zambiri?" Kodi mudamuonapo akuganizira za chakudya nthawi zonse, kufunafuna chakudya, ndipo nthawi zina akubisa chakudya pamene palibe aliyense? Izi zitha kukhala vuto lalikulu komanso chisoni kwa mayi kapena bambo omwe amachiwona. Nthawi zambiri, timaganiza kuti ichi ndi chilakolako cha mwana cha chakudya. Koma sizili choncho nthawi zonse. Chifukwa cha njala yochulukirapo iyi chingakhale matenda osowa a majini otchedwa Prader-Willi Syndrome . Lero, tikambirana za izi, njala yochuluka yomwe imabwera nayo (`hyperphagia`), ndi chithandizo chake m'njira yosavuta komanso yochezeka.
Kodi Prader-Willi Syndrome ndi chiyani?
Mwachidule, Prader-Willi Syndrome ndi matenda osowa kwambiri omwe amayamba chifukwa cha kusintha kwa DNA yathu. Nthawi zina, amathanso kuchitika chifukwa cha kuvulala kwambiri mutu.
Matendawa amakhudza kwambiri hypothalamus, gawo la ubongo wathu. Ganizirani za hypothalamus ngati kusintha kwa thupi lathu. Tikadya ndikumva kukhuta, gawoli limatitumizira chizindikiro chakuti "Chabwino, zakwana." Koma mu ubongo wa munthu amene ali ndi Prader-Willi Syndrome, "kusintha" kumeneku sikugwira ntchito bwino. Chifukwa chake, ngakhale atadya chakudya chochuluka bwanji, samva kukhuta.
Ichi ndichifukwa chake ana awa nthawi zonse amakhala ndi njala. Si mlandu wawo, kapena umbombo. Ndi gawo la matenda okha.
Chifukwa cha njala yosalekeza imeneyi (`hyperphagia`), nthawi zonse amafunafuna chakudya.
- Amadya chakudya chochuluka kwambiri kuposa munthu wamba.
- Amabisa chakudya kuti adye pambuyo pake.
- Nthawi zina zoopsa kwambiri, mungayesedwe kudya chakudya chozizira, mwina chakudya chochokera ku zinyalala.
Ngati vutoli silikuthetsedwa, chiopsezo cha kunenepa kwambiri ndi mavuto ena okhudzana ndi thanzi (monga matenda a shuga ndi matenda a mtima) chimakhala chachikulu kwambiri.
Kodi pali mankhwala a njala yaikuluyi?
Inde. Pali mankhwala omwe angathandize kuchepetsa njala yochulukayi. Vykat XR (diazoxide choline) ndi imodzi mwa mankhwala otere. Mankhwalawa amagwira ntchito pokhudza mahomoni ndi ma neurotransmitters muubongo wathu omwe amalamulira njala ndi chilakolako, kuchepetsa kumva njala kosalekeza.
Koma iyi si mankhwala omwe angatengedwe mwadzidzidzi. Chithandizochi chiyenera kuyamba kokha motsogozedwa ndi katswiri.
Kodi mumagwiritsa ntchito bwanji mankhwalawa?
Kawirikawiri piritsi ili limatengedwa kamodzi patsiku. Likhoza kumwedwa ndi chakudya kapena ayi. Komabe , piritsili liyenera kumezedwa lonse popanda kusweka, kuphwanya, kapena kutafuna.
Dokotala wanu adzayamba kumwa mankhwalawa pa mlingo wochepa kwambiri. Kenako, milungu iwiri iliyonse, adzawonjezera mlingo pang'onopang'ono. Izi zimatchedwa 'titration.' Izi zimachitika kuti mupeze mlingo wosamalira womwe umakugwirani ntchito komanso womwe umawongolera bwino zizindikiro zanu. Ngati simungathe kumwa mankhwalawa kwa sabata imodzi kapena kuposerapo, dokotala wanu angayambenso kumwa mlingo wochepa ndikuwonjezera pang'onopang'ono.
Kodi mumadziwa bwanji ngati mankhwalawo akugwira ntchito?
Mankhwalawa akayamba kugwira ntchito, inu kapena mwana wanu mudzazindikira kuti zinthu monga kulakalaka chakudya nthawi zonse, kulakalaka chakudya, ndi njala yambiri zidzachepa pang'onopang'ono. Popeza zimatenga nthawi kuti mankhwalawa agwire ntchito mokwanira, musayembekezere kusintha kwakukulu m'masabata oyamba.
Komabe, ngati chilakolako chanu sichikuchepa ngakhale mutamwa mankhwalawo, onetsetsani kuti mwalankhula ndi dokotala wanu za vutoli. Iye akhoza kusiya kumwa mankhwalawo kapena kukupatsani chithandizo china ngati pakufunika kutero.
Kodi zotsatirapo zoyipa kwambiri ndi ziti ndipo n’chiyani chingachitike pa izo?
Monga mankhwala ena aliwonse, ingayambitse zotsatirapo zoyipa. Koma si aliyense amene amalandira. Tiyeni tiwone zotsatirapo zoyipa zomwe zimafala kwambiri komanso momwe tingazithanire nazo.
| Zotsatira Zam'mbali | Momwe mungayang'anire |
|---|---|
| Kukula kwambiri kwa tsitsi m'thupi (hypertrichosis) | Izi nthawi zambiri zimakhala zosavuta kuzithetsa. Mutha kugwiritsa ntchito njira zochotsera tsitsi ngati pakufunika kutero. Komabe, ngati sizikumveka bwino, lankhulani ndi dokotala wanu. |
| Kutupa chifukwa cha kuchulukana kwa madzi m'thupi (edema) | Ngati mukumva zizindikiro monga kutupa kwa miyendo, akakolo, kapena mapazi, kapena kuvutika kupuma , uzani dokotala wanu nthawi yomweyo . Dokotala wanu angafunike kusiya kumwa mankhwala kwakanthawi, kuchepetsa mlingo, kapena kukupatsani mankhwala ena, monga diuretics. |
| Kuchuluka kwa shuga m'magazi | Izi ndi zinthu zofunika kuzidziwa. Dokotala wanu adzayang'ana shuga m'magazi mwanu nthawi zonse musanayambe kumwa mankhwalawo komanso pamene mukumwa. Ngati pakufunika kutero, mungapatsidwe mankhwala ena kuti akuthandizeni kuchepetsa shuga m'magazi mwanu. |
| Ziphuphu pakhungu | Gwiritsani ntchito sopo wofewa komanso wopanda fungo. Ngati kuyabwa kukuchitika, mafuta odzola angagwiritsidwe ntchito monga momwe dokotala wanenera. Ngati kuyabwa kukukulirakulira kapena sikutha, dziwitsani dokotala wanu. |
Matenda oopsa omwe amafunikira chisamaliro chapadera!
Tauzidwa kuti mankhwalawa angayambitse shuga wambiri m'magazi. Nthawi zina, izi zingayambitse matenda oopsa otchedwa Diabetic Ketoacidosis (DKA) . Izi zimachitika pamene zinthu zoopsa zotchedwa ketones zimasonkhana m'magazi chifukwa thupi lilibe insulin yokwanira. Izi ndi zadzidzidzi zachipatala.
Zizindikiro za kuchuluka kwa shuga m'magazi:
- Kumva ludzu losazolowereka
- Kukodza pafupipafupi
- Kumva njala kuposa masiku onse
- Kuchepetsa thupi mosadziwa
Zizindikiro zochenjeza za matenda a shuga a Ketoacidosis (DKA):
- Kusanza kapena kusanza
- Kuwawa kwam'mimba
- Kutopa kwambiri kapena kusokonezeka maganizo
- Kuvuta kupuma
- Fungo la zipatso pamphuno
- Kukhala ndi shuga wambiri m'magazi (monga kupitirira 300 mg/dL)
Ngati muli ndi zizindikiro izi, pitani kwa dokotala nthawi yomweyo. Kapena, pitani ku Dipatimenti Yodzidzimutsa (ETU) ya chipatala chapafupi. Izi ndizofunikira kwambiri.
Dziwani momwe mankhwala ena amagwirizanirana ndi mankhwala ena.
Mankhwala ena omwe mumamwa angakhudze momwe Vykat XR imagwirira ntchito. Mankhwala ena amatha kuwonjezera zotsatira zoyipa za Vykat XR, pomwe ena amatha kuchepetsa mphamvu yake.
Choncho, uzani dokotala wanu momveka bwino za mankhwala onse omwe inu kapena mwana wanu mukumwa (kuphatikizapo mankhwala olembedwa ndi dokotala, mankhwala ogulitsidwa kunja kwa chipatala, mavitamini, mankhwala achikhalidwe, ndi mankhwala azitsamba). Iye adzasintha mlingo kapena kusintha mankhwala ngati pakufunika kutero. Musayambe kapena kusiya mankhwala aliwonse popanda kufunsa dokotala wanu.
Uthenga Wopita Nawo Kunyumba
- Prader-Willi Syndrome ndi matenda osowa kwambiri omwe amakhudza majini omwe amachititsa kuti munthu asamve kukhuta.
- Dziwani kuti njala yochuluka ya mwana wanu komanso kufunafuna chakudya si vuto lake, koma ndi chizindikiro cha matendawo.
- Mankhwala monga Vykat XR amatha kuchepetsa njala yochulukayi, koma nthawi zonse ayenera kuchitidwa motsogozedwa ndi katswiri .
- Nthawi zonse dziwani zotsatirapo zake, makamaka zizindikiro za shuga wambiri m'magazi. Ngati mukupeza zizindikiro za matenda a shuga otchedwa Diabetic Ketoacidosis (DKA), pitani ku chipatala mwamsanga.
- Ndikofunikira kwambiri kudziwitsa dokotala wanu za mankhwala ena onse ndi zowonjezera zomwe mukumwa.
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