If your child is living with epilepsy, you might be presented with a lengthy list of treatment options. Anti-seizure medication, special diets, implanted devices, surgery — all are potential ways to help keep seizures under control. The number of choices leaves parents and caregivers with a lot to think about, and with so many new treatments available, it’s easy to become overwhelmed.
Partnering with your child’s neurologist to learn about the different paths toward becoming seizure free can help you make the best decisions for your family. Here are five considerations to help you better understand and weigh treatment options.
Children need to take antiepileptic drugs on a consistent schedule. Unfortunately, sometimes their doses can interfere with school or other busy times of the day. It’s a good idea to talk with your child’s provider about the best timing for treatment and how frequently your child will require medication.
One MyEpilepsyTeam member shared their difficulties after being diagnosed at age 7 and how adjusting medication timing helped: “Kids can be cruel sometimes if people are different. I changed when my meds were taken from lunchtime to snack at home.”
Other members recalled going to the nurse from the lunchroom to take their medication without their friends noticing.
In addition to daily dosing, some epilepsy treatments require ongoing blood testing and lab work. Review these expectations with your child’s doctor in advance so you can do your best to schedule around important dates like school events, birthdays, and family vacations. Children and adolescents with epilepsy shouldn’t feel like they’re missing out because of treatment, which could bring a risk that they won’t take the medication. Planning ahead can help.
Although most seizure medications for children come with minimal side effects, your child may experience drowsiness, irritability, stomach upset, or a rash. Knowing about these potential adverse effects ahead of time will help you understand what’s going on and explain the symptoms to your child’s doctor, who can determine the best way to address them.
Members of MyEpilepsyTeam share tips and ideas to watch out for with new meds. “I don’t know the meds your child takes, but some have side effects that cause incontinence [loss of bladder or bowel control],” one member said. “Read more about the side effects.”
You might not be able to avoid all adverse effects, but it’s important to discuss them with your child’s neurologist and let your child know what to expect (as age appropriate). Issues like incontinence can be embarrassing for a child who has outgrown diapers or wetting the bed.
As teens get older and transition to adulthood, they should learn that seizure medication can affect certain types of contraceptives (birth control) and may be dangerous during pregnancy. Some medications may also cause weight gain, and your doctor should discuss the importance of a healthy diet with you and your child.
Honesty is the best policy when explaining side effects and other aspects of epilepsy to your child. By allowing them to ask questions and answering them truthfully, you can build a relationship of trust. When children grow into teenagers, they should be encouraged to communicate with their doctors to take a more active role in their treatment decisions.
Knowing how your child’s medications can affect them in the short term is helpful, but it’s also essential to understand the potential long-term repercussions of various treatment options. For example, restrictive eating plans like the ketogenic diet may need to be discontinued after a set period if they seem to affect your child’s growth and development. When it comes to medical care, you and your doctor always want to choose treatments in which the benefits outweigh the risks.
Some seizure medications can affect the liver, kidneys, and blood cells, so ongoing monitoring and periodic adjustments may be needed. Seizure meds can also have an impact on bone growth, a significant consideration for children on long-term treatment.
If possible, discuss your child’s family medical history with their health care team to help weigh the risks of epilepsy treatment against any genetic predispositions for other health conditions. Lifestyle interventions, such as physical activity, a healthy diet, and adequate calcium intake, can help build strong bones, alleviating some of the increased risks associated with epilepsy treatment.
Medical devices and surgery for epilepsy may help children who have seizures that don’t respond to adequate medications. Your child may need to take some time off from school and other activities for those procedures and, perhaps, additional appointments for revisions or monitoring. Before scheduling a procedure, you’ll want to know what’s involved, not only on the day it’s done, but also in the months and years that follow.
For example, implanted devices, such as for vagus nerve stimulation, require a minimally invasive procedure. Before making a small incision on the chest to place the device, the doctor will use medication to make your child go to sleep and not feel discomfort. Most kids go home the same day with just a few stitches, but follow-up appointments are needed to regulate the device.
The neurologist might also recommend surgery options based on your child’s type of epilepsy, seizure frequency, and other risk factors. You may have the choice of methods using lasers that require less downtime. Frequent follow-ups after surgery allow the doctor to evaluate the procedure’s success and ensure that your child is healing properly. Remember to prepare for both the initial surgery and follow-up care.
No parent or caregiver wants to base their child’s health care decisions on cost. However, coverage is a key consideration for most families. You can start by calling your health insurance company to find out the cost of different medications and procedures recommended by your child’s neurologist. If the price after insurance is still too high, ask your child’s health care team about other resources that can help.
Major drug companies have patient assistance programs for people who find it challenging to afford their meds. One MyEpilepsyTeam member shared their experience with this type of resource: “My son is able to get his antiseizure medication directly from the pharmaceutical company that makes it,” they said. “There are income qualifications, but it’s worth checking out. You may be able to get the meds for free or at a reduced price.”
You could be eligible to get treatments for no cost or discounted rates. By involving your child’s health care team, you can explore more affordable ways to treat your child’s recurrent seizures. The treatment of epilepsy is always evolving, and parents are a vital part of the conversation and decision-making process.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 115,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
What quality of life factors do you take into consideration when treating your child’s epileptic seizure disorder? Do you have any seizure control or lifestyle tips for different types of seizures? Share your experience in the comments below, or start a conversation by posting on your Activities page.