Epilepsy is a neurological disorder affecting the brain nerve cells characterized by recurrent seizures. It can affect people at different ages and in different ways. In children the type of seizure depends on whether the whole brain is affected (generalized seizure) or just a certain part of it (partial seizure).
As a young adult with epilepsy I still depend on my parents for so much. This got me thinking about parents whose children have been diagnosed with epilepsy. For some it will be a temporary problem easily controlled with medication and will out grow it after a few years while in others it may be a lifelong challenge affecting many areas of the child’s life. Well, it is a really tough journey.
Many parents, family members or caregivers are always concerned about my health and safety as a person with epilepsy. (Trust me, I am rarely left on my own). These concerns become even greater and more important in the case of a child.
Imagine you are a parent whose 6 month old baby has been diagnosed with epilepsy. First and foremost how do you deal with the emotional trauma?You have now become the primary caregiver of a baby who gets seizures and to make matters worse the baby can’t communicate how they feel. Besides the normal late nights parents with normal infants go through, you are always have on high alert so that you are there for your baby in case they get a seizure (As long as your child has epilepsy you have to get used to getting up late in the night to care for your child during and after a seizure). During clinic visits you are not even sure whether you have given the accurate information to the medical attendants.
As the parent you should always be ready to explain your child’s condition to healthcare workers, family members and the teachers at school. You also have to explain to your child in a way they will easily understand and accept the condition. This means that you have to educate yourself about epilepsy, how to respond during and after a seizure as well as the treatment options.
Medication is very important in managing this condition so you as the parent should ensure the right medicine is taken at the right time. The worst mistake is to skip medication.
It is so sad that people with epilepsy are still stigmatized. It is already a challenge for your child battling this condition. You have to be ready to be the support system for them in case they get ridiculed by their peers, are treated awkwardly in public when they get seizures or when they get depressed because they feel inadequate as compared to their peers.
The line between safety and independence is never clear (honestly, this is a major cause of argument between me and my parents). This is a very huge challenge because you want your child to be safe then again you still want them to have the full experience of being a child. No matter how much they argue or throw tantrums, always put SAFETY FIRST. Remember, in case you need a caregiver, they should be well trained and exposed to children with epilepsy.
Sometimes all these may take a toll on you but you have to find a way to be in zen and keep your mental health in check.
Credit : Ess Wambo
Feature Photo : https://www.psypost.org