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Epilepsy Treatment: A 1-Year-Old Child's Remote Consultation with the Best Children's Epilepsy Hospital in the U.S. and a New Treatment Approach

medebound

Updated: Jan 9

Author:Medical Editor Emma 




What is Epilepsy and How Common is It?


Epilepsy is a chronic brain disorder characterized by repeated seizures, which are brief signs and/or symptoms caused by excessive or synchronized abnormal neural activity in the brain. According to the World Health Organization (WHO), approximately 50 million people worldwide have epilepsy, making it one of the most common neurological disorders.


At any given point in time, the prevalence of active epilepsy (i.e., ongoing seizures or those requiring treatment) in the general population is estimated to be between 4 and 10 per 1,000 people. Additionally, approximately 5 million people are diagnosed with epilepsy each year globally.


According to data from the National Institutes of Health (NIH), at least 2.3 million adults and nearly 500,000 children in the United States have some form of epilepsy, a condition that causes neurons or clusters of neurons in the brain to sometimes emit abnormal signals, resulting in seizures. Every year, an additional 150,000 people are diagnosed with epilepsy. The disorder affects both men and women and can onset at any age. In the United States alone, the annual direct medical costs related to epilepsy, as well as lost income and reduced productivity, are estimated to be as high as $15.5 billion.


The neural disruptions that occur during a seizure may lead to strange sensations, emotions, and behaviors. Sometimes, it can also cause convulsions, abnormal movements, and loss of consciousness. Some people only experience occasional seizures, while others may have hundreds of seizures a day. Epilepsy has many forms, and the symptoms vary from person to person. The recently adopted term “epilepsy” emphasizes the diversity of epilepsy types and causes.



How is Epilepsy Treated?


The treatment options for epilepsy are diverse. Medication is the primary choice, with antiepileptic drugs (AEDs) effectively controlling seizures in about 70% of patients. Common medications include sodium valproate, carbamazepine, lamotrigine, and levetiracetam, with blood concentrations needing regular monitoring to adjust doses accordingly. For patients who do not respond to medication, surgical options such as lobectomy, corpus callosum section, or laser interstitial thermal therapy (LITT) may be considered. Additionally, neuromodulation therapies, such as vagus nerve stimulation (VNS) and deep brain stimulation (DBS), are also effective alternatives. Some patients may also try dietary therapies, such as the ketogenic diet or the modified Atkins diet, to control their seizures.




Can Epilepsy Be Cured?

Epilepsy is a common neurological disorder that affects approximately 50 million people worldwide.70% to 80% of patients can achieve long-term remission with proper antiepileptic drug treatment.


However, some patients may not respond to medication, requiring consideration of other treatment methods such as surgery, neuromodulation, or ketogenic diets. Therefore, the treatment outcome for epilepsy varies from person to person. Some patients can achieve a cure or remain seizure-free for long periods, while others may require long-term management and treatment.


Approximately three-quarters of epilepsy patients can control seizures through medication or surgery. However, even with the best treatment, about 25% to 30% of patients continue to experience seizures. Doctors refer to this as drug-resistant epilepsy. In some cases, patients may experience a condition called status epilepticus, where a seizure lasts more than five minutes or seizures recur without the patient regaining consciousness. Prolonged status epilepticus can damage the brain and may be life-threatening.



Advantages and Latest Advances in Epilepsy Treatment in the USA


The USA has the following advantages in the field of epilepsy treatment:


  1. Advanced Medical Technology: The USA is a global leader in neuroscience research, with cutting-edge technologies such as advanced neuroimaging and neurostimulation therapies. These technologies enable doctors to diagnose and treat epilepsy patients more accurately.

  2. Specialized Medical Teams: Renowned hospitals in the USA are home to highly skilled medical professionals and expert teams specializing in epilepsy. These experts have extensive experience and collaborate with doctors and scientists from other fields to provide comprehensive epilepsy care.

  3. Diverse Treatment Options: The USA offers a wide range of treatment options for epilepsy, including medication, surgical interventions, and neurostimulation therapies. For patients whose seizures are difficult to control with medication, surgical and neurostimulation treatments provide new hope.


In terms of treatment progress, the USA continues to develop new anti-epileptic drugs and employ advanced techniques like minimally invasive surgery.


  • Diazepam (Libervant) On April 26, 2024, the U.S. Food and Drug Administration (FDA) officially approved the Diazepam (brand name: Libervant) oral film formulation, which is available in 5mg, 7.5mg, 10mg, 12.5mg, and 15mg doses. This formulation is designed for the acute treatment of intermittent, stereotypical, and frequent seizures in children aged 2 to 5 years with epilepsy (i.e., seizure clusters or acute repetitive seizures), which are different from their usual seizure patterns. This approval enriches the existing range of diazepam formulations, which include oral tablets, solutions, concentrates, injections, rectal gels, and nasal sprays, in addition to the newly approved oral film.

  • Epidiolex Epidiolex, an FDA-approved medication derived from cannabidiol (CBD), is specifically designed to treat seizures associated with rare and severe types of epilepsy in both children and adults, including Dravet Syndrome, Lennox-Gastaut Syndrome (LGS), and Tuberous Sclerosis Complex (TSC). Clinical studies have demonstrated its effectiveness in reducing seizure frequency when used as part of a comprehensive treatment plan, often alongside other anti-seizure medications. As an oral solution flavored for children, the dose is personalized based on weight and medical needs. While generally well-tolerated, it may cause mild side effects such as drowsiness, reduced appetite, gastrointestinal discomfort, fatigue, and elevated liver enzymes requiring monitoring. Epidiolex offers hope for those with difficult-to-control seizures and marks a significant advancement in pediatric epilepsy care.

  • Thermal Ablation Thermal ablation, also known as LITT (Laser Interstitial Thermal Therapy), is a less invasive surgical option for carefully selected epilepsy patients. It uses laser energy to heat and destroy the brain cells causing seizures without opening the bone covering the brain. MRI is used to monitor the procedure and ensure precision. Candidates for LITT include those with focal epilepsy, such as mesial temporal lobe epilepsy (MTLE), or seizures caused by specific lesions. The procedure typically involves general anesthesia, a small incision in the scalp and skull, and guidance of a laser probe to the seizure focus. Recovery is quick, with patients usually going home after one or two days in the hospital. LITT has shown promising results in reducing seizures, with fewer side effects compared to traditional open surgery, and is now a good option for some MTLE patients when medications fail. However, all surgeries have risks, and patients should discuss the benefits and risks of all treatment options with their epilepsy surgery team.

  • Responsive Neurostimulation (RNS) Responsive Neurostimulation (RNS) is a safe and feasible treatment option for children as young as six with epilepsy. It can effectively control seizures and can be used in conjunction with other surgical treatments. RNS works by implanting a battery-powered device in the skull to monitor and help control brain activity related to seizures. Children with partial onset epilepsy who have not responded to at least two seizure medications may be considered candidates for RNS. This treatment is typically used when other options, such as surgery, are not viable. During the procedure, a neurosurgeon implants the device through small holes in the skull under general anesthesia, which takes about two to four hours. However, it's important to consider that children's skulls are still growing, which may necessitate additional surgery for future battery replacements.

  • MONARCH Therapy The MONARCH Therapy, developed by Stoke Therapeutics, is an antisense oligonucleotide blocker that is administered through a lumbar puncture, but it is only available for children over 2 years old. This product is still not commercially available, but it is being researched in the USA.

Overall, the advanced technologies, professional teams, and diverse treatment options in the USA offer patients better opportunities for treatment and improved outcomes in the management of epilepsy.


Leading Hospitals and Experts in Epilepsy Treatment in the USA


The United States is home to several hospitals and experts who are at the forefront of epilepsy diagnosis and treatment. Below are some of the renowned institutions and experts in this field:


  • Boston Children's Hospital  Affiliated with Harvard University, its Pediatric Epilepsy Center is ranked as the number one children's epilepsy treatment center in the U.S. The center sees over 2,000 epilepsy patients aged 0 to 18 from around the world every year. It has a multidisciplinary team and actively participates in genetic research and innovative surgeries such as laser ablation for treating deep brain epilepsy foci.


  • Mayo Clinic  A globally renowned medical institution, its epilepsy team consists of neurologists, neurosurgeons, imaging specialists, and mental health experts, offering advanced diagnostic and treatment techniques, including deep brain stimulation.


  • UCSF Health (University of California, San Francisco Medical Center)  The UCSF Medical Center's neurology and neurosurgery teams are constantly innovating in the field of brain neuroscience. It ranks first in the western U.S. for the number of epilepsy surgeries, with over 5,700 surgeries performed annually.


  • Cleveland Clinic  Home to several prominent epilepsy experts, including Dr. Ajay Gupta, who focuses on epilepsy surgery and neurostimulation techniques, and Dr. Elaine Wyllie, who specializes in the diagnosis and treatment of pediatric epilepsy.


  • NYU Langone Health  Its Epilepsy Center is led by Dr. Orrin Devinsky, who has extensive experience in epilepsy diagnosis and treatment, particularly in drug therapy and surgical treatments, where significant results have been achieved.


These hospitals and experts possess extensive experience and advanced technologies in the diagnosis and treatment of epilepsy, offering comprehensive medical services to patients.





Costs of Epilepsy Treatment in the United States


According to data from the National Institutes of Health (NIH), an analysis of 353,530 epilepsy patients with commercial insurance, 378,051 with Medicaid, and 69,176 with both Medicare and supplementary insurance assessed over 160,000 epilepsy-related emergency transports, 225,000 emergency department (ED) visits, 49,000 hospital admissions, 700 urgent care visits, and approximately 2.5 million outpatient visits.


Among these epilepsy-related hospitalizations, 37.4% included intensive care unit (ICU) care. 


For patients with commercial insurance, the average health plan payments for epilepsy-related healthcare visits are as follows:


  • Hospital Admission: $22,305 ($14,336–$36,096)

  • ICU Admission: $3,375 ($565–$9,095)

  • Emergency Department (ED) Visit: $1,913 ($417–$4,163)

  • Emergency Transport: $687 ($415–$1,083)

  • Outpatient: $95 ($23–$232)

  • Urgent Care Visit: $57 ($0–$171)


A systematic review of the costs associated with the U.S. epilepsy healthcare system (including expenses borne by insurance companies and patient out-of-pocket costs) found that the annual costs for epilepsy care are estimated to range from $1,022 to $19,749 per person. Costs for refractory epilepsy are significantly higher than for controlled or treatment-responsive epilepsy.


For international patients, the cost of treating epilepsy may increase by 15%-40% compared to U.S. residents. Medical costs can vary depending on the region, type of insurance, and specific patient circumstances.


It is worth noting that some specialized U.S.-based cross-border healthcare service providers can assist international patients in applying for cost reductions from hospitals. For example, Medebound Health helped an ACL orthopedic patient from Asia obtain a nearly 50% discount on treatment costs for a Bear procedure at HSS in the United States.



Challenges for International Epilepsy Patients


For families facing a major disease diagnosis, accessing advanced treatments in the United States often feels out of reach.


Challenge 1: Difficulty in Choosing Treatment Options 


Patients may lack knowledge of various treatment methods (such as medications, surgery, and neurostimulation), making it difficult to make informed decisions.


Challenge 2: High Medical Costs 


Long-term treatment for epilepsy can place a significant financial burden on patients, not to mention the additional expenses of long-distance travel, accommodation, and living costs. Moreover, 95% of international patients have no insurance coverage for these expenses.


Challenge 3: Language and Cultural Barriers 


International patients may face challenges in communication and cultural differences when seeking medical care abroad, which can impact the effectiveness of treatment.


Challenge 4: Need for Long-term Stay in the U.S. or Frequent Travel Between Countries 


Epilepsy treatment is a long-term process, and temporary relief does not necessarily equate to long-term remission. Depending on the stage of epilepsy, some patients may need to stay long-term in the U.S., or make frequent trips between countries.


Is there a way to help alleviate the burden for patients?



Case of Remote Video Consultation with U.S. Experts for Epilepsy Patients in Asia


Yes, there is indeed a way.


A 1-year-and-9-month-old child was diagnosed with Dravet Syndrome in China. The child's mother, Ms. Li, took her child to Beijing Children's Hospital, the best hospital for pediatric epilepsy treatment in China.


The child was prescribed the latest medications, Depakine and Clobazam, and after multiple rounds of treatment, the child's symptoms were not effectively controlled. With no effective solutions from domestic specialists, Ms. Li turned her attention to the United States, known for its world-class medical care.


Fortunately, through a recommendation from an American friend, the patient's mother got in touch with Medebound HEALTH, a company with 9 years of experience and a patient satisfaction rate of 95%.


Medebound HEALTH

Medebound HEALTH helped the patient connect with Dr. Steven, a pediatric neurology expert at Boston Children's Hospital, ranked #1 in the United States, to seek the latest treatment options.


In just 5 days, we successfully completed case preparation, translation, and facilitated a consultation with the top specialist!



International Consultation for Pediatric Epilepsy: China & US Live Session
International Consultation for Pediatric Epilepsy: China & US Live Session

During the Consultation, Dr. Steven provided a precise analysis of the current treatment plan and recommended the latest epilepsy medications in the US, Epidiolex and Fintepla. More importantly, he developed a personalized seizure management plan for the child and revealed the potential future of gene therapy.


This consultation gave the child's parents a new sense of hope!


After the video consultation, Medebound HEALTH assisted Ms. Li in connecting with two leading hospitals in China’s medical pilot zones: Boao Super Hospital in Hainan and Linkou Chang Gung Memorial Hospital in Taiwan. These hospitals were able to provide the latest US medications mentioned by the American doctor. Medebound HEALTH facilitated a new pathway for the child’s treatment, offering Ms. Li's family hope for the future.



How Medebound HEALTH Supports You:




1. Initial Consultation: Connect with us to discover your needs. Our dedicated care team will concisely outline all treatment options, ensuring you understand each choice without feeling overwhelmed or stressed.


 2. Doctor Consultation: We'll arrange a remote video consultation with an expert from a prestigious U.S. hospital. Language barriers are no issue, as we provide professional translation services to facilitate clear and comfortable communication between you and the doctor about your condition and recovery goals.


3. Tailored Treatment Plan: Following the doctor's consultation, we'll help you devise a personalized treatment plan. We'll clearly explain which treatments may be advantageous for you, the duration of treatment, associated costs, and expected outcomes.


4. Travel Facilitation: If traveling to the U.S. for treatment is necessary, we'll streamline the process for you. We'll handle visa applications, flight bookings, accommodations near the hospital, airport transfers, and all travel arrangements for your family.


5.Hospital Arrival Support: Upon arrival at the U.S. hospital, our team will be there to guide you through every step. We'll assist with doctor communication, explain treatment plans, support your family, and leverage our years of partnership with U.S. hospitals to secure the maximum discount for you, which can sometimes reach 15%-50%—far surpassing the discounts patients can typically negotiate on their own.


6. Ongoing Recovery Support: Even after returning home, our care continues. We'll support your rehabilitation efforts, monitor your recovery progress, arrange follow-up doctor consultations as needed, and be with you every step of the way until you achieve your recovery goals.



Medebound HEALTH: Connecting You to the World's Top Medical Resources


If you or your family members are seeking world-class treatment for complex conditions, Medebound HEALTH is your best choice. Through our partnerships with top-tier medical institutions in the United States, whether through remote video consultations or traveling to the US for treatment, we provide full support every step of the way.


Contact us:


US Free Hotline/Text: +19173101780 




Or you can fill out the form below 👇 our friendly team will quickly connect you to the right expert!


Your health deserves the best. Medebound HEALTH helps you easily achieve a top-tier medical journey!


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