When your child is diagnosed with epilepsy, life can change in many ways. The journey can be filled with new routines, learning about medications, and staying alert for seizures. As a caregiver, you often visit doctors, follow treatment plans, and have many feelings about your child’s health. You want the best for your child and might wonder if their medicines are really helping or if there are additional options.
Living with epilepsy is a journey for the whole family. You might notice your child having good days and not-so-good days, and you may worry about their future and well-being. If your child continues to have seizures despite trying two appropriately prescribed and well-tolerated anti-seizure medications, it might be a sign of drug-resistant epilepsy (DRE). Understanding this condition can help you find new treatments that could make a big difference.
What Does Drug-Resistant Epilepsy Mean?
Drug-resistant epilepsy (DRE) means seizures persist despite trying 2 or more anti-epileptic medicines that are appropriately prescribed, properly used, and well tolerated. In other words, it means that even after trying at least two different anti-seizure medicines as prescribed, seizures keep happening.
This can be really tough to navigate because along with ongoing seizures, there are other risks to think about. People with DRE can have mood and behavioral problems or trouble learning. Medicines can also cause side effects. DRE may also mean more trips to the hospital because of seizures and a higher chance of seizure-related injuries. These challenges are why it's so important to get the right help and try different treatments to make life better for kids with DRE.
Recognizing Signs of Drug-Resistant Epilepsy:
Knowing the signs of DRE can help you find the right treatment sooner. Here are 4 things you can look out for:
1. Seizure frequency: One main sign is seizures that keep happening or get worse, even though your child is taking their medicine. Keeping a diary of seizures can help you and your doctor see how often they occur and if there is any pattern. Write down the date, time, duration, and details of each seizure.
2. Seizure types: Understanding different seizure types can help. When you know what to look for, you can tell if seizures keep happening despite treatment. These are some common types of seizures to look out for:
-Absence Seizures: Short periods of staring or not being aware of surroundings, often mistaken for daydreaming. They can happen many times a day and may be hard to notice.
-Tonic-Clonic Seizures: Shaking and loss of consciousness. Your child might fall and get hurt during these seizures.
-Focal Seizures: Affect one part of the brain, causing unusual movements or feelings in one area of the body, like twitching or a strange taste in the mouth.
3. Seizure after-effects: After a seizure, your child might go through a recovery period, known as the postictal period. They might feel very tired, confused, or have trouble speaking or remembering what happened. These symptoms can last from a few minutes to several hours and show that the seizures are not well-controlled.
4. Medication side effects: Sometimes, the side effects of seizure medications can look like seizure symptoms. These can include dizziness, drowsiness, and trouble concentrating. It’s important to notice these side effects and talk to your doctor about them, as they can affect your child’s quality of life and make it harder to tell if the treatment is working.
Along with understanding the signs mentioned above, it's helpful to keep a log or notes on what you notice in your child. This can make it easier to explain to the doctor how often seizures happen, any patterns you see, and any changes in your child's behavior or health. Keeping track of these details helps your doctor understand what's happening and adjust the treatment plan as needed.
Reasons for Less-Effective Treatment of Seizures:
There are several reasons why seizures may not be well-treated. One common issue is missing doses of medication, which can happen due to busy schedules, forgetfulness, or reluctance to take the medicine. Using reminders like alarms or pill organizers can help make sure your child keeps taking their medicine, which is important for managing seizures effectively.
Another challenge is giving the wrong dosage of medication. It's important to regularly check with the doctor to ensure the dosage is appropriate for your child's current needs. Sometimes, dose changes are necessary as your child grows or their condition transforms. Incorrect dosages can either fail to control seizures or cause harmful side effects.
VNS Therapy™ is an add-on treatment designed for people ages 4 and older with drug-resistant focal seizures.