A ɔndastand aw yu fɔ wɔri as mama ɔ papa we yu kam fɔ no se yu pikin gɛt sik we dɛn kɔl CDKL5 we nɔ kin apin so ɔltɛm. Na dis kayn tɛm, aw i kin gi yu pawa fɔ lan bɔt tritmɛnt we go ebul fɔ kɔntrol yu pikin in kɔndishɔn? Tide wi go tɔk bɔt wan likwid mɛrɛsin we dɛn kɔl Ganaxolone we de briŋ dis kayn op, ɛn dɛn kin rɛkɔmɛnd am spɛshal fɔ dis kɔndishɔn.
Wetin na Ganaxolone?
Fɔ tɔk am simpul wan, Ganaxolone na mɛrɛsin we dɛn kin tek fɔ it. I de kam bak ɔnda di brand nem Zytalmy. dεn kin yus am fכ kכntrכl di sik we de kam pan pipul dεm we gεt wan rεs jεnεtik kכndyushכn we dεn kכ l sayklin-dipεndεnt kinase-lεk 5 (CDKL5) dεfisiεns dizכrd (CDD) .
Dis kכndyushכn we dεn kכl CDKL5 kin mek s כm sכ m pikin dεm we de sכk bכku bכku wan. So dis mɛrɛsin kin mek dɛn rili fil fri. Bɔt sɔntɛnde, yu dɔktɔ kin gi yu dis mɛrɛsin fɔ ɔda sik dɛn bak. So if yu gɛt ɛni kwɛstyɔn, i go fayn fɔ aks yu dɔktɔ bɔt am ɛn mek i klia.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin fɔ tek mɛrɛsin
Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ gi yu dɔktɔ kɔmplit diskripshɔn bɔt yu ɔ yu pikin in wɛlbɔdi istri. If yu gɛt ɛni wan pan di kɔndishɔn dɛn we de na di tebul we de dɔŋ ya, mek shɔ se yu tɛl dɛn bɔt am.
| Yu kɔndishɔn ɔ yu abit | Wetin mek yu fɔ tɛl di dɔktɔ? |
|---|---|
| Pwɛl hat ɔr kin tink bɔt fɔ kil insɛf | Sɔntɛnde dis mɛrɛsin kin chenj yu maynd, so yu dɔktɔ fɔ tek tɛm mɔ bɔt am. |
| Liva sik | Di liva de ɛp fɔ pul dis mɛrɛsin kɔmɔt na di bɔdi. If yu gɛt prɔblɛm wit yu liva, yu kin nid fɔ chenj di doz we yu de tek. |
| Drug ɔ rɔm adikshɔn | Rɔk ɛn sɔm drɔgs kin afɛkt di we aw dis mɛrɛsin de wok ɛn i kin mek pɔsin slip mɔ. |
| Alɛji to ganaxolone ɔ ɔda mɛrɛsin, it, ɔ day | Dis go ɛp yu fɔ no bifo tɛm if yu kin gɛt alɛji. |
| Fɔ gɛt bɛlɛ ɔ fɔ tray fɔ gɛt bɛlɛ | Yu fɔ tɔk bɔt aw dis mɛrɛsin sef we yu gɛt bɛlɛ wit yu dɔktɔ. |
| Fɔ gi di pikin in bɛlɛ | Yu fɔ tɔk to yu dɔktɔ bɔt if di mɛrɛsin de pas to di pikin tru in mama in milk ɛn di tin dɛn we i kin du. |
Aw ɛksaktɔli yu kin yuz dis mɛrɛsin?
I rili impɔtant fɔ gi dis mɛrɛsin kɔrɛkt wan. Na sɔm advays dɛn ya bɔt aw fɔ du am.
- Gi wit it: Gi dis mɛrɛsin ɔltɛm wit it .
- Gi am di rayt tɛm: Mek yu abit fɔ tek yu mɛrɛsin di sem tɛm ɛvride. Dis go ɛp fɔ mek di mɛrɛsin kɔntinyu fɔ de na yu bɔdi.
- Shek gud gud wan: Bifo yu gi di mɛrɛsin, nɔ fɔgɛt fɔ shek di bɔtul fayn fayn wan .
- Yuz di kɔrɛkt tin: Yuz di ɔral sirinj ɔ di mɛzhɔmɛnt kɔp we de kam wit di mɛrɛsin fɔ mɛzhɔ am. Nɔ yuz ti spɔnj dɛn we yu kin yuz na os , bikɔs dɛn nɔ kin gɛt di kɔrɛkt mɛzhɔmɛnt ɛn i kin mek yu nɔ yuz am di rayt doz.
- Nɔ stɔp wantɛm wantɛm: Nɔ stɔp fɔ tek di mɛrɛsin pas yu dɔktɔ tɛl yu fɔ tek am. If yu stɔp am wantɛm wantɛm, dat kin mek yu gɛt siriɔs riakshɔn.
Yu go gɛt spɛshal instrɔkshɔn liflet (MedGuide) wit dis mɛrɛsin. Rid am gud gud wan ɛvri tɛm. Yu go gɛt bak wan INSTRUKSHƆN FƆ YUZ liflet bɔt aw fɔ yuz di mɛrɛsin. If yu gɛt ɛni kwɛstyɔn bɔt am, aks yu dɔktɔ fɔ mek i no yu klia wan.
We yu de gi pikin dɛn
Dɛn kin gi dis mɛrɛsin to pikin dɛn we ol lɛk 2 ia bay we dɔktɔ tɛl dɛn, bɔt dɛn nid spɛshal kia ɛn supavayshɔn we dɛn de gi am.
Wetin a go du if a mis wan doz fɔ mɛrɛsin ɛn tek bɔku?
If yu mis wan it...
If yu fɔgɛt fɔ tek wan doz, tek am jɔs lɛk aw yu mɛmba. Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek di nɛks doz, skip di doz we yu mis ɛn tek di nɛks doz di tɛm we yu dɔn sɛtul. Nɔ ɛva tek dabl doz.
If yu tek tumɔs (ɔvados)...
If yu tink se yu dɔn tek dis mɛrɛsin tumɔs, go na di ɔspitul we de nia yu Imejɛnsi Dipatmɛnt (ETU) wantɛm wantɛm. Ɔda we de fɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ gɛt advays.
Ɔda tin dɛm wae kin intarakt wit dis mɛrɛsin (Interactions) .
Ganexolone kin intarakt wit sɔm ɔda mɛrɛsin dɛm wae yu de tek. So, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn, vaytamɛn dɛn, ɛn ɔyl mɛrɛsin dɛn we yu de tek.
| Tayp fɔ drɔg ɔ sɔntin | Ɛgzampul dɛn ɛn not dɛn |
|---|---|
| Rum | Nɔ drink rɔm. I kin mek yu slip ɛn diziz we di mɛrɛsin kin mek yu gɛt mɔ ɛn mɔ. |
| Mɛrɛsin fɔ wɔri ɔ fɔ slip | Dɛn tin ya kin mek pɔsin slip mɔ ɛn mɔ. |
| Sɔm mɛrɛsin fɔ pwɛl hat | Fɔ ɛgzampul: amitriptyline, fluoxetine, sɛtralin |
| Ɔda mɛrɛsin dɛn we de mek pɔsin in kɔnvuls | fכ egzampl: kabamazεpin, fεnobarbital, fεnitoin |
| Jɛnɛral anestetik dɛn | Tɛl yu dɔktɔ dɛn se yu de tek dis mɛrɛsin bifo dɛn du yu ɔpreshɔn. |
| Rifampin, we na wan antibayɔtik | Dis kin ridyus di effektiv we ganaxolone de wok. |
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, ganaxolone kin mek yu gɛt sayd ɛfɛkt. Sɔm kin siriɔs, ɛn ɔda wan dɛn kin kɔmɔn. I impɔtant fɔ no bɔt dɛn tin ya.
| Sayd ɛfɛkt we pɔsin kin gɛt | Tɔk bɔt |
|---|---|
| Sayd ɛfɛkt dɛn we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| Fɔ slip we yu de wok fɔ di de | Fɔ slip we yu nɔ bin want bikɔs yu de slip pasmak. |
| Di chenj dɛn we pɔsin kin gɛt na in maynd | Fɔ vɛks wantɛm wantɛm, fɔ vɛks kwik, fɔ gɛt pwɛl hat mɔ ɛn mɔ, ɔ fɔ tink bɔt fɔ kil insɛf. |
| Tin dɛm fɔ tɛl yu dɔktɔ if dɛn kɔntinyu ɔr de mɔna yu | |
| Di we aw pɔsin kin slip | Dis kin apin mɔs pan di fɔs stej dɛm fɔ stat di mɛrɛsin. |
| Spit ɔut saliva frɔm di mɔt | Di saliva prodakshɔn we de go ɔp. |
| Fiva | Di bɔdi in tɛmpracha we de go ɔp. |
| Simptom dɛm we tan lɛk kol | Nos we de rɔn ɔ nos we dɔn stɔp. |
Aw fɔ kip ɛn trowe mɛrɛsin fayn fayn wan?
Usay fɔ kip
Kip dis mɛrɛsin usay pikin ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich . I bɛtɛ fɔ kip am na rum tɛmpracha (bitwin 20-25 digri sɛlshiɔs). Trowe ɛni mɛrɛsin we lɛf 30 dez afta yu opin di bɔtul ɔ afta di de we i dɔn.
Fɔ pul di tin dɛn we dɛn dɔn pul
Dis mɛrɛsin kin rili denja ɛn ivin kil am if ɔda big pɔsin, pikin, ɔ animal we dɛn kin mɛn na os tek am. So, i impɔtant fɔ trowe di mɛrɛsin we dɛn nɔ yuz ɔ we dɔn pas fayn fayn wan.
If yu ebul, tek dɛn tin ya to wan program fɔ tek mɛrɛsin bak. Aks yu famasi ɔ lokal ɔtoriti dɛn bɔt dis. If nɔto so, chɛk di lɛbl fɔ si if i fayn fɔ trowe dɛn na dɔti. If yu du dat, miks di likwid mɛrɛsin wit sɔntin lɛk pusi dɔti, dɔti, ɔ kɔfi grɔn, put am insay bag ɔ kɔntena we dɛn sidɔm tayt, ɛn trowe am na di dɔti. If yu nɔ shɔ, go to yu dɔktɔ.
Mɛsej we dɛn kin kɛr go na os
- Ganaxolone na wan mɛrɛsin we dɛn kin yuz fɔ kɔntrol di sik we pɔsin kin gɛt we i gɛt wan patikyula sik we dɛn kɔl CDKL5.
- Ɔltɛm gi dis mɛrɛsin wit it, yuz di spɛshal tin we di dɔktɔ gi yu fɔ mɛzhɔ.
- Nɔ stɔp fɔ tek mɛrɛsin wantɛm wantɛm if yu nɔ gɛt dɔktɔ advays.
- We yu de tek dis mɛrɛsin, wach fɔ ɛni chenj na yu maynd, pwɛl hat, ɔr de tink bɔt fɔ kil yusɛf. If dis apin, tɛl yu dɔktɔ wantɛm wantɛm.
- Trowe di mɛrɛsin dɛn we yu nɔ yuz ɔ we dɔn dɔn fayn fayn wan, usay pikin dɛn ɛn animal dɛn we yu de mɛn nɔ go ebul fɔ rich.
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