I understand how worried you must be as a parent when you learn that your child has seizures caused by a rare condition called CDKL5. At a time like this, how empowering it is to learn about a treatment that can control your child's condition? Today we are going to talk about a liquid medicine called Ganaxolone that brings such hope, and is specifically recommended for this condition.
What is Ganaxolone?
Simply put, Ganaxolone is an oral liquid medication. It also comes under the brand name Zytalmy. It is primarily used to control seizures in people with a rare genetic condition called cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) .
This condition called CDKL5 usually causes frequent seizures in young children. So this medicine can bring great relief to them. However, sometimes your doctor may prescribe this medicine for other medical conditions as well. So if you have any questions, it is best to ask your doctor about it and clarify it.
Things you need to tell your doctor before starting medication
Before starting this medication, it is very important to give your doctor a complete description of your or your child's health history. If you have any of the conditions listed in the table below, be sure to tell them about it.
| Your condition or habit | Why should you tell the doctor? |
|---|---|
| Depression or suicidal thoughts | This medication can sometimes alter mental states, so your doctor should be especially careful about it. |
| Liver disease | The liver helps remove this medicine from the body. If you have liver problems, your dose may need to be adjusted. |
| Drug or alcohol addiction | Alcohol and certain drugs can affect the way this medication works and can increase drowsiness. |
| Allergies to ganaxolone or other medicines, foods, or dyes | This will help you know in advance if you may have an allergy. |
| Being pregnant or trying to get pregnant | You should discuss the safety of this medication during pregnancy with your doctor. |
| Breastfeeding the baby | You should talk to your doctor about whether the medicine passes to the baby through breast milk and its effects. |
How exactly do you use this medicine?
It is very important to give this medicine correctly. Here are some tips on how to do it.
- Give with food: Always give this medicine with a meal .
- Give it on time: Make it a habit to take your medicine at the same time every day. This will help maintain consistent levels of the medicine in your body.
- Shake well: Before giving the medicine, don't forget to shake the bottle well .
- Use the correct device: Use the oral syringe or measuring cup that comes with the medicine to measure it. Do not use household teaspoons , as they may not have the correct measurements and may result in an incorrect dose.
- Don't stop suddenly: Don't stop taking the medication unless your doctor tells you to. Stopping suddenly can cause serious reactions.
You will receive a special instruction leaflet (MedGuide) with this medicine. Read it carefully every time. You will also receive an INSTRUCTIONS FOR USE leaflet on how to use the medicine. If you have any questions about it, ask your doctor for clarification.
When giving to children
This medicine can be given to children as young as 2 years old on the recommendation of a doctor, but special care and supervision are required when giving it.
What if I miss a dose of medicine and take too much?
If you miss a meal...
If you forget to take a dose, take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and take the next dose at the scheduled time. Never take a double dose.
If you take too much (overdose)...
If you think you have taken too much of this medicine, go to the nearest hospital Emergency Department (ETU) immediately. Alternatively, you can call the National Poisons Information Centre at the Colombo National Hospital for advice.
Other things that may interact with this medicine (Interactions)
Ganexolone can interact with some other medications you are taking. Therefore, tell your doctor about all medications, vitamins, and herbal remedies you are taking.
| Type of drug or substance | Examples and notes |
|---|---|
| Alcohol | Avoid drinking alcohol. It increases the drowsiness and dizziness caused by the medication. |
| Medication for anxiety or sleep | These can further increase drowsiness. |
| Some medications for depression | For example: amitriptyline, fluoxetine, sertraline |
| Other anticonvulsants | For example: carbamazepine, phenobarbital, phenytoin |
| General anesthetics | Inform your doctors that you are taking this medicine before surgery. |
| Rifampin, an antibiotic | This may reduce the effectiveness of ganaxolone. |
What are the possible side effects?
Like any medicine, ganaxolone can cause side effects. Some are serious, some are common. It's important to be aware of these.
| Side effect | Description |
|---|---|
| Side effects that should be reported to your doctor immediately | |
| Allergic reactions | Skin rash, itching, swelling of the face, lips, tongue or throat. |
| Falling asleep during the day's work | Falling asleep unintentionally due to excessive sleepiness. |
| Mental changes | Sudden anger, agitation, increased depression, or suicidal thoughts. |
| Things to tell your doctor if they persist or are bothersome | |
| Drowsiness | This is most common during the initial stages of starting the medication. |
| Spitting out saliva from the mouth | Increased saliva production. |
| Fever | Increased body temperature. |
| Cold-like symptoms | Runny nose or stuffy nose. |
How to store and dispose of medicine safely?
Storage
Keep this medicine out of the reach of children and pets . It is best to store it at room temperature (between 20-25 degrees Celsius). Discard any remaining medicine 30 days after opening the bottle or after the expiration date.
Removal
This medicine can be very dangerous and even fatal if ingested by another adult, child, or pet. Therefore, it is essential to properly dispose of unused or expired medicine.
If you can, take these to a medication take-back program. Ask your pharmacy or local authorities about this. If not, check the label to see if it is okay to throw them in the trash. If you do, mix the liquid medicine with something like cat litter, soil, or coffee grounds, put it in a tightly sealed bag or container, and throw it in the trash. If you are unsure, consult your doctor.
Take-Home Message
- Ganaxolone is a medication used to control seizures caused by a specific condition called CDKL5.
- Always give this medicine with food, using the special measuring device provided by the doctor.
- Do not stop taking medication suddenly without medical advice.
- While taking this medication, watch out for any changes in your mental state, depression, or suicidal thoughts. If this happens, tell your doctor immediately.
- Dispose of unused or expired medicines safely, out of reach of children and pets.
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