When the doctor tells you that your child has a rare condition called Mucopolysaccharidosis type VII, or MPS VII (Sly Syndrome) for short, you, as a mother or father, must have been very shocked and worried. At the same time, when you heard about the vaccine called Vestronidase alfa (brand name: MEPSEVII) as a treatment for this, you must have many questions in your mind. It is normal to think things like, "What is this medicine? Will it help the child? Are there any side effects?" Don't be afraid. Today, we will talk about this medicine in simple language that you can understand, in a friendly manner.
Simply put, what is Vestronidase alfa?
Think of our body as a big factory. This factory has specialized 'workers' to do different jobs. We call these workers 'enzymes'. In a child with a condition like MPS VII, the body does not produce a certain important enzyme, or it produces very little of it.
Vestronidase alfa is a treatment that addresses that deficiency . To be precise, it is an enzyme replacement therapy (ERT) . What this vaccine does is to give the child an enzyme that is not naturally produced in the body. When this enzyme enters the body, it breaks down harmful substances that accumulate in the body and helps control the symptoms.
The most important thing is that this is not a cure for the disease. However, this treatment can help control the symptoms, improve the child's quality of life, and make the child live a more comfortable life.
How to give this medicine to the child?
This medicine is not a pill that can be swallowed or injected at home. Vestronidase alfa is given as an infusion, like saline, into a vein .
This procedure always takes place in a hospital or clinic , under the close supervision of doctors and nurses. It can take several hours. The medical team constantly checks the child's condition (heart rate, blood pressure, etc.) while the child is receiving this treatment. So you don't need to worry about your child's safety.
Although this treatment can be given even to newborns, there are special precautions that need to be followed depending on the age and condition of the child. Your child's doctor will inform you about this.
Things you need to tell your doctor before starting treatment
Before starting this treatment, it is extremely important to tell the doctor some information about your child's health. This information will determine how the child will be treated and the precautions to be taken.
| Matter to be informed | Why is that important? |
|---|---|
| Any type of allergy | Be sure to tell your doctor if you have any allergies to vestronidase alfa, other medicines, foods, dyes, or preservatives. This will help prevent severe allergic reactions. |
| Pregnancy or trying to get pregnant | If the person receiving treatment is a young person, it is very important to inform them whether they are pregnant or trying to get pregnant. |
| Breast-feeding | If the mother is receiving treatment, she should inform the doctor whether she is breastfeeding the baby. |
What things should we be careful about when giving medicine?
Be aware of severe allergic reactions.
This medicine can cause severe allergic reactions in some children. To reduce this risk, your doctor may decide to give you other medicines (for example, antihistamines like piritan, fever reducers) about an hour before giving the Vestronidase alfa vaccine. So follow your doctor's instructions exactly.
Missed Dose
It is very important to get this vaccine on schedule. If for some reason you are unable to go to the hospital on the scheduled date, call your doctor immediately and let them know, so they can advise you on the next date to come.
Overdose
Since this medicine is given in a hospital, the chances of overdose are very low. However, if this happens or you suspect it, inform the medical team immediately. If you have any problems at home, call the National Poisons Information Centre at the Colombo National Hospital . Or take the child to the Emergency Treatment Unit (ETU) of the nearest hospital.
Problems with other medications
It has not been thoroughly studied how this medicine interacts with other medications. Therefore, it is very important to inform your doctor about any other medications, vitamins, herbal remedies, or supplements your child is taking. Also, do not start any new medications without first checking with your child's doctor.
What are the possible side effects of this medicine?
Like any medicine, Vestronidase alfa vaccine can cause some side effects. Although most of these are minor, there are some things we should be especially aware of.
| Serious side effects that you should report to your doctor or nurse immediately | |
|---|---|
| Severe allergy symptoms | Skin irritation, eczema, skin rash, itching, swelling of the lips, tongue or face. |
| Breathing difficulties | Difficulty breathing, chest tightness, abnormal noises when breathing. |
| Low blood pressure | Dizziness, blue eyes, near loss of consciousness. |
| Side effects that are usually not dangerous, but should be reported to the doctor if they persist | |
| Diarrhea | Flatulence. |
| Discomfort at the injection site | Pain, redness, or swelling around the injection site. |
This list does not include all possible side effects. In addition, if you notice anything unusual, never hesitate to talk to your doctor about it.
Take-Home Message
- Vestronidase alfa is an enzyme replacement therapy that controls the symptoms of a rare condition called MPS VII (Sly Syndrome). It is not a cure for the disease.
- This treatment is given as an infusion into a vein in a hospital, under medical supervision.
- Before starting treatment, it is imperative to inform the doctor about all of your child's allergies and other health conditions.
- If you experience severe allergic symptoms such as facial swelling, difficulty breathing, or skin rashes during treatment, notify the medical team immediately.
- Do not miss your scheduled treatment date for any reason. If you miss it, call your doctor immediately.
- If you have any questions or concerns about this medication, discuss them with your doctor.
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