Has your child been diagnosed with Duchenne Muscular Dystrophy (DMD)? And have you been told about the drug Eteplirsen as a special treatment for it? It's normal to feel a little scared, worried, and hesitant when you hear a name like this, especially when it concerns your child. But don't be afraid. Knowledge is our greatest strength. Today, let's talk in a very simple and friendly way about what Eteplirsen is, what it does, and what you need to know about it as a parent.
What kind of medicine is Eteplirsen really?
Simply put, Eteplirsen is a special drug used to treat a condition called Duchenne Muscular Dystrophy (DMD) . However, it is not given to all children with DMD. It is only given to children who have a specific gene mutation .
Think about it, the muscles in our body are like the walls of a building. These walls need cement to keep them strong. Similarly, to keep our muscles strong and healthy, we need a special protein called dystrophin . Children with DMD have a defect in the production of this dystrophin protein.
What the drug Eteplirsen does is help the dystrophin protein, which has been disabled by the genetic defect, to function again, to some extent. That is, this drug helps the muscles make some of the dystrophin protein they need.
Importantly, Eteplirsen is not a cure for DMD. However, it can slow down the rate at which the muscle weakness caused by the disease occurs, providing some relief to the child.
Things you need to tell your doctor before starting treatment
Before your child starts this treatment, it is essential that you clearly explain these facts to your doctor . Do not hide anything, as all this information is important for the child's safety.
- Allergies: Be sure to tell your child if they have any allergies to Eteplirsen or any other medicine, food, dyes, or preservatives.
- Pregnancy or trying to get pregnant: This may not apply to children, as this medication is usually given to children. However, if a young person is being treated for any reason, the doctor should be informed if she is pregnant or trying to get pregnant.
- Breastfeeding: If the person receiving treatment is a breastfeeding mother, the doctor should also be informed.
How do you give this medicine to a child?
This is not a home remedy. Eteplirsen is an injection into a vein. This treatment is given in a hospital or clinic, under the full supervision of a doctor or trained nursing staff. So there is no need to worry about the child's safety.
This vaccine is usually given once a week. It is very important to follow the exact days and times of treatment.
What if I miss a day to take my medication?
To get the most out of this treatment, it is essential to get the vaccinations on schedule. If for some reason you are unable to take your child to the hospital on the scheduled date, call your doctor or clinic immediately and let them know. They will advise you on what to do next.
What if I take too much medicine?
This is given in a hospital setting, so the chances of this happening are almost zero. However, in the event of an emergency, if you suspect an overdose, call the National Poisons Information Centre at the National Hospital immediately. Or take the child to the nearest hospital Emergency Department (ETU) .
Things to consider during treatment
There are currently no known interactions with this medicine. However, to be on the safe side, give your doctor a complete list of any other medicines (including vitamins, Panadol), traditional medicines, herbal products or supplements your child is taking.
Throughout the treatment, the doctor will monitor the child's condition very closely. This means that they will regularly check the child's muscle strength, movement, and overall health.
What are the possible side effects?
Like any medicine, Eteplirsen can cause some side effects. However, not everyone gets them. It is important to be aware of these. Let's break these side effects down into two categories.
| Side effect | Description and what to do |
|---|---|
| Serious side effects that should be reported to your doctor immediately | |
| Severe allergic reactions |
If you notice any of these, it is an emergency. Seek medical advice immediately. |
| Side effects that are usually not serious, but should be reported to the doctor if they persist | |
| Vomiting | Vomiting after taking the medicine. |
| Headache | Mild to moderate headache. |
| Cough | A new cough or worsening of an existing cough. |
| Dizziness and Loss of balance | Dizziness and difficulty maintaining balance when walking or standing. |
If your child develops any other unusual symptoms not mentioned in this list, inform your doctor about them as well. Don't ignore anything.
Take-Home Message
- Eteplirsen is a special treatment for children with Duchenne Muscular Dystrophy (DMD) and a specific genetic mutation .
- Although this is not a cure for the disease, it can help control symptoms and slow down muscle weakness.
- This medicine is given in a hospital by a trained medical staff as an injection into a vein, so there is nothing to worry about at home.
- Be sure to tell your doctor about any allergies your child has or any other medications your child is taking.
- If you experience severe allergic symptoms such as skin rashes and facial swelling after taking the medicine, seek medical advice immediately.
- Take your child to the hospital on schedule , without missing any appointments. If you have any concerns, call the doctor immediately.
- If you have any further questions about this treatment, please feel free to ask your doctor without hesitation.
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