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When seizures don’t respond to initial treatments, it can feel overwhelming. The specialists with the Refractory Epilepsy Clinic are here to help. We work closely with you to understand the full picture of your child’s epilepsy and find the most effective path forward.If your child has refractory seizures, also called drug-resistant epilepsy, uncontrolled seizures or intractable epilepsy, it means seizures continue even while taking prescribed antiseizure medications.
Your child’s first visit to the Refractory Epilepsy Clinic is designed to give our team a complete picture of your child’s health and to provide your family with a clear care plan.
To make the most of your time together, come prepared with a list of your child’s current and past medications, including notes on whether they have been effective, as well as any videos of your child’s seizures.
Be sure to have previous test results, such as MRI scans and electroencephalogram (EEG) records, transferred to us before your appointment.
During your visit, your child’s epileptologist will thoroughly review your child’s condition, including how long they’ve been having seizures, what treatments have been tried, and how epilepsy and treatments impact your family’s lives. Depending on your child’s needs, you may meet a broader care team that includes a nurse navigator, neuropsychologist, dietitian, neurosurgeon, epilepsy surgery navigator and social worker all focused on coordinated care for your child.
Our team also may recommend additional testing, such as a repeat epilepsy focused MRI, advanced imaging or further EEG monitoring, to better understand what’s causing your child’s seizures. From there, we’ll explain all available options, which may include newer or more advanced medications or a conversation about surgical treatments.
Once testing is complete and recommendations are made, our team will outline a personalized plan and make sure your family has the resources you need. That may include:
We know that every child’s experience with epilepsy is different. Our team works closely with your family to understand your child’s needs, answer your questions and guide you through each step of care.
Our first priority is to better understand your child’s seizures. To do this, we may recommend specialized testing, such as:
These tests help us answer key questions:
With this detailed information, we create a treatment plan tailored specifically for your child. Our goal is always to find the safest and most effective way to reduce or stop seizures, while protecting your child’s development and enhancing quality of life.
Throughout this process, you are an essential part of the team. We take time to explain results clearly, discuss options and support you in making confident decisions for your child.
Research shows that some children who follow a ketogenic diet, modified Atkins diet or low glycemic diet experience a reduction in seizure frequency. These diets limit carbohydrates and are high in fat and moderate in protein. This type of diet is thought to help by altering the brain’s excitability through fueling the body with fats and proteins rather than carbohydrates. Our team works with your family to decide whether one of these diets is right for your child and to support you in day-to-day management.
Our multidisciplinary care team includes a dietitian who can guide you and your child on meal plans that may help control epilepsy and reduce seizure activity. Children treated with epilepsy diets are monitored at the Norton Children’s Ketogenic Diet Clinic with regular checkups to track growth, bone health, electrolytes and other health metrics.
When medications and dietary approaches aren’t enough, epilepsy surgery may offer a path to seizure reduction or the possibility of eliminating seizures. Our team includes a pediatric neurosurgeon, neuropsychologist and epilepsy surgery navigator who work alongside your child’s epileptologist to evaluate whether brain surgery is the right option. Surgery usually is offered after discussing all options, risks and benefits with you in detail.
We use advanced imaging, such as Surgical Theater technology and testing to understand exactly where seizures originate and how surgery, including new and minimally invasive options, might affect critical brain functions before any decisions are made.