An epilepsy diagnosis for your child can be worrisome. Chances are that you’ll want to know how this will impact her overall health and safety.
Having an understanding of what to expect will put your mind at ease so that you can emotionally support and guide your child.
1. Educate Yourself
The first thing you should expect to do is educate yourself.
Epilepsy is an unpredictable disorder that can improve or degrade at any time. There is no such thing as a “textbook case”, meaning that no two epilepsy patients are alike.
People with epilepsy will have different triggers. Many believe that flashing lights cause seizures. While this is true, it doesn’t apply to every patient.
Foods, smells, sounds, stress and extreme emotions can all create seizures, but the list is virtually endless. Ultimately, the only way to know which triggers affect your child is to carefully observe him.
When he has a seizure, ask him if he remembers what he was doing when it happened. This way, you can ensure he avoids these triggers as much as possible.
Another important step is to learn how to handle a seizure. The best way to do this is to take a first aid course. These usually only require one weekend to complete and cost very little.
They will teach you everything you need to know about what to do before, during and after an incident.
Finally, learning about epilepsy myths is a crucial step, simply because many of these assumptions can put your child’s life in danger.
The first thing you need to understand is that seizures — while frightening — are not inherently dangerous. If anything, the hazards are external, such as untrained individuals doing something wrong.
Because children often play together without constant supervision, they lack the mental and emotional stability to help their friend during a seizure, causing peers to make potentially deadly mistakes.
Many people believe that individuals swallow their tongues during a seizure, but this is absolutely untrue. Swallowing your tongue is physically impossible.
Further complicating this issue is that observers might place objects in the patient’s mouth to prevent the alleged swallowing, creating a choking hazard.
Another dangerous practice is when someone tries to stop the seizure, usually by holding the patient down or shaking him in an attempt to “wake him up”.
Only in extreme circumstances does a seizure need to be stopped, and only a hospital can do it.
The proper way to deal with a seizure is to move the patient away from any hard objects, such as furniture or toys. This prevents your child from being injured during the event.
All you can do after that is place something soft under the child’s head and wait for the seizure to run its course.
If the seizure lasts longer than 5 minutes or multiple successive seizures occur — a condition called status epilepticus — you need to call an ambulance immediately; however, rest assured that the chances of this happening are extremely small.
2. See a Specialist
While your family doctor seems like a logical choice for help, there is little they can offer in terms of advice or treatment. Epilepsy should be monitored, treated and tested under the supervision of a neurologist. Once you speak to a doctor, he or she will refer you to such a specialist.
Chances are that your neurologist will immediately schedule regular tests after the initial diagnosis and throughout the duration of your child’s condition.
This involves non-invasive procedures, such as an electroencephalogram or “EEG” for short. The specialist may also request a magnetic resonance imaging or “MRI” test.
The EEG looks for spikes in brainwave patterns indicative of seizure activity.
The MRI scans your child’s brain, looking for physical anomalies to possibly explain the root cause of her epilepsy; however, the majority of cases are due to a chemical imbalance in the brain, so the MRI is unlikely to reveal anything.
If scarring, tissue damage or tumors are found, then surgery may be required at the neurologist’s discretion.
3. Know Your Options
Once tests are complete, a specialist will discuss possible treatment options. These vary depending on the type of seizures, the frequency and whether or not treatment is even needed. In reality, the best way to control epilepsy is through medication, but dietary changes have been known to help in some rare cases.
Medication may seem like a logical choice, but don’t be surprised if your child’s neurologist is hesitant to resort to this measure.
Anticonvulsant drugs can have very bad side effects, and are generally not administered to children. In fact, finding the right medication for an epilepsy patient is based on trial and error.
These drugs can affect your child’s development or put him through physical or mental discomfort. Ultimately, the decision is yours to make, but it helps to get your child’s input as well, depending on her age.
4. Prepare for Future Effects of Epilepsy
Overall, epilepsy isn’t particularly obstructive. Your child will have a normal life, with some minor exceptions.
Perhaps the most impacting issue will involve driving, especially after the patient reaches the age of 16. Watching her peers get their licenses can be depressing, as she will likely feel excluded.
In this case, reassure her that while she may not be able to drive immediately, there is a good chance things will improve as she gets older.
Most states allow people to drive after being seizure free for a certain amount of time, with or without medication. Waiting periods vary depending on where you live, but it usually ranges from 3 to 12 months.
Another thing to consider is the potential stigma associated with having epilepsy. In his younger years, your child may experience teasing from his peers.
While you can’t control what other kids say or do, it’s important to encourage him to surround himself with friends who understand his condition. This support structure will make dealing with epilepsy much easier.
Finally, see a specialist regularly. It’s important to keep your child’s neurologist up to date on the patient’s condition, as changes can happen at any time. Sometimes, these changes can open up new treatment options, or will require immediate action.
Nobody wants their child to have a neurological disorder, but epilepsy can’t be prevented. The best you can do is take the proper steps to learn, understand and cope with the condition. The sooner you accept and handle the situation, the sooner your child can move on and enjoy a healthy, happy life.