Epilepsy is a neurological condition that presents itself as seizures, and it can either be inherited or developed later in life. The onset of epilepsy is most common in children and older adults, but the condition can occur at any age.
Adults who get epilepsy well after childhood, usually suffered a brain injury or tumour, resulting in defects to their cerebral structure. Other causes can be related to genetic abnormalities, prior brain infection, prenatal injuries or developmental disorders. But in about half of people with epilepsy, there’s no apparent cause. In children, the cause of epilepsy may at times be genetic.
A seizure itself is caused by electrical activity in the brain that can be caused by damage or malformation. If left untreated, the illness can lead to death. While it may be a lifelong condition, epilepsy is usually manageable with medication and at-home treatment.
Childhood epilepsy is not uncommon in Malaysia, and there are many treatments available for the condition. However, even with medical intervention, having epilepsy can be a challenging ordeal especially if you’re a child. Here are some ways you can support your child if they have this condition:
Educate Your Child
Chances are your child may be confused, depressed or angry because of their condition. They may not entirely understand what is happening to them. As a parent, you must explain to them about their condition and what the doctors say can help it. At the same time, assure them that they aren’t alone—they have you in their lives to help them through it.
It would help to watch videos with them, read them books and even enrol them in support groups when they’re older. This may also be a learning experience for yourself if your child is only recently diagnosed. Knowing you’ll actually be learning alongside them may empower your child more, too.
Don’t hesitate to tell your child “I don’t know” when they ask a question you don’t have an answer for. Save up all their interesting questions for the doctor during your child’s next appointment. It’s best not to look it up online by yourself as you may read the wrong information and end up scaring yourself—and your child—unnecessarily. It won’t do your child any good if they are accidentally fed misinformation from you.
Notify Their School
Epilepsy can happen anywhere, even at school or daycare centre while your child is playing and learning. You will need to notify your child’s daycare centre, preschool, kindergarten or school of their condition. Make sure the teachers in charge know what to do in case of a seizure.
Don’t hesitate to send them informational documents, brochures, website links or any supporting literature to help them learn more about your child’s disorder. However, if the medication is working, there should be no cause for alarm. But should an episode happen while you’re not there, the adults need to know what to do.
Learn the Signs
Epilepsy oftentimes presents certain indications before being triggered, and they are often easy to miss. An ‘aura’ is the term that some people use to describe the warning they feel before they have a tonic clonic seizure. An epilepsy ‘aura’ is in fact a focal aware seizure. Focal aware seizures (FAS) are sometimes called ‘warnings’ or ‘auras’ because, for some people, a FAS develops into another type of seizure.
Notice the warnings that precede a seizure so you can quickly take action. These signs can be something as subtle as losing concentration, being inattentive, having a glassy, faraway look and staring off into space. You should also remind your child, if they are old enough to communicate clearly, to inform you if they feel anything even remotely strange.
Pre-seizures ‘auras’ may include odd smells, visions, and feelings. It may even result in the victim being unfamiliar with their surroundings. However, your child may not notice these symptoms all the time, especially if the symptom itself confuses them. So, you should always keep weather eye. This may be hard sometimes if you’re not around, so be sure to inform other adults who may be taking care of your child in your absence.
Monitor Their Medication
If someone has epilepsy, medication is one of the easiest ways to control the symptoms. However, as is the case with most medication, not everyone responds the same way to the same anti-epileptic drugs (or AEDs). Your child’s doctor may switch medication if your child’s condition doesn’t improve, so you have to be patient. But once the doctor finds the right type and dosage of medication, your child’s condition should be manageable.
Some children may be too young to consume their medication properly. Pills, either as tablets or capsules, may present a common challenge among children. This is why you should always ask your doctor if the medication comes in syrup form. However, if you’re keen on teaching your child early on how to swallow pills, there are some tricks that you can resort to to make it easier for them.
Pay Attention to Side Effects
As effective as they are at keeping seizures at bay, anti-epileptic medications may cause a variety of unpleasant side effects. These may include sleepiness, unsteadiness, vomiting, poor concentration, tremors and double vision. Be sure to note down any odd physical or behavioural changes that your child may be experiencing. Side effects are an indication that they are incompatible with their current regime and may need to switch medication.
So, if your child is experiencing any of the aforementioned side effects, quickly notify their doctor and ask for an alternative. They will usually prescribe another type of anti-epileptic drug or adjust the dose on the current prescription. Many factors can come into play when side effects are concerned, including genetic, environmental, gender and even ethnicity.
Keep a Journal
Adults can usually monitor their own symptoms without any help, and will usually do so through journaling. As a parent of a young child, you need to do the documentation for them; a doctor may usually ask you to do this anyway. Record the dates and time of each episode, as well as the duration.
A seizure typically lasts anywhere between 30 seconds to 2 minutes. Anything longer than that is concerning. If a seizure lasts longer than 5 minutes, you should immediately call for medical emergency.
Keeping an epilepsy journal can greatly help your child’s doctor to determine which medication works best for them. It can also help them make decisions about adjusting the doses depending on the severity of the episodes.
Prioritise Aftercare
A child will likely be disoriented or scared after an episode. They may also feel fatigued. Besides taking the proper measures to keeping them safe during a seizure, you also need to make sure they’re okay afterwards. Once they have regained consciousness, be there at their side with a glass of water, and a moist towel.
Epilepsy may be a lifelong condition, so you may need to be patient when the episodes reoccur. But as long as your child takes their medication on time and gets ample rest, the symptoms should be manageable. Do ensure they are never sleep deprived as this can trigger an epileptic seizure. Some good aftercare activities can be as simple as going outside for a walk, sitting in the garden, watching television or even reading a book to them.
Let Them Play
Our first instinct as parents is often the notion of being overprotective of our children. Parents of epileptic children may be extra fearful of letting their child do what other children do. The last thing your kid needs is to feel different. So whenever possible, and when they’ve been properly medicated, loosen the reigns a bit. Don’t coddle or smother your child either just because you may think they’re fragile. Children are sometimes surprisingly resilient, and they eventually need to learn to be independent adults.
It’s also important not to show distress because your child can sense your anxiety. So always try to be patient and calm—before, during and after a seizure. As far as childhood illnesses go, epilepsy is pretty manageable and may even disappear later in life. Let your child have a childhood; they deserve it.
Your Child’s Condition Doesn’t Define Them
Being the parent of an epileptic child can be challenging and difficult, but it is also a great opportunity for you to forge an unbreakable bond. Childhood epilepsy can be a lifelong condition, or it can go away before your child reaches their teens. Either way, it’s important to always be there to help them manage their condition—both physically and emotionally.
However, also trust that even if they don’t get better, they’ll eventually learn to do things by themselves as they get older. When given the right treatment, your child can lead a long, fulfilling life, regardless of their condition. And that is the most you can hope for as a parent.
Disclaimer: The information provided in this article is for informational purposes only and should not be considered as medical advice from Motherhood. For any health-related concerns, it is advisable to consult with a qualified healthcare professional or medical practitioner.
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