How DIACOMIT can help you on your treatment journey
We know that caring for someone with Dravet syndrome can be a challenging path to walk. Explore this site to find answers to questions you may have about Dravet syndrome, from diagnosis and treatment to lifestyle management.
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The most common side effects are sleepiness, decreased appetite, agitation, impaired coordination, decreased weight, decreased muscle tone, nausea, tremor, slurred speech, and trouble sleeping.
DIACOMIT is indicated for the treatment of seizures associated with Dravet syndrome in patients 2 years of age and older taking clobazam. There are no clinical data to support the use of DIACOMIT by itself in Dravet syndrome.
Talk to your child’s doctor about DIACOMIT.
All about Dravet syndrome
The journey continues
As a caregiver for a teenager or young adult with Dravet syndrome, you’ve already come a long way in handling your child’s special needs. As they continue to grow up, you will pass new milestones and face new challenges together. Enter this section to learn more about Dravet syndrome progression and get an overview of the challenges on this leg of your journey.
Not actual patients
What is Dravet syndrome?
Dravet (pronounced “drah-VAY”) syndrome is a lifelong disease that usually appears in the first year of life, when an otherwise normally developing child begins having frequent seizures. This can be frightening and disorienting, with the child experiencing long seizures often triggered by fever or changes in temperature.
Seizures may cause lasting damage, which over time can lead to cognitive and physical developmental delays. The primary goal of Dravet syndrome treatment is to reduce the frequency and length of seizures.
Unfortunately, seizures associated with Dravet syndrome can be resistant to treatment—multiple therapies and frequent regimen adjustments are often needed to control seizures.
- Is a rare and treatment-resistant form of epilepsy that often develops in the first year of life
- Occurs in 1 in 15,700 births in the United States
- Is most often caused by a genetic mutation that usually occurs “de novo” (or “new”)—neither parent carries the mutation
Dravet syndrome diagnosis
For children suffering from seizures, understanding the underlying cause can help guide more precise treatment. Earlier treatment could potentially contribute to better long-term outcomes.
Many children with Dravet syndrome are initially misdiagnosed. The patient’s initial brain scan may appear normal or their symptoms might lead doctors to diagnose a different form of epilepsy. Though not 100% conclusive, genetic testing is highly recommended.
Genetic testing is available for as little as $250 through the Behind the Seizure® program at Invitae.com.
Genetic causes of Dravet syndrome:
- Dravet syndrome is most often caused by an abnormality in a gene called SCN1A
- The SCN1A gene is involved in transmitting signals between nerve cells
- The SCN1A mutation is seen in at least 75% of all Dravet syndrome patients
- Some patients will have a mutation in the gene and not have seizures; other patients without the gene mutation might have seizures that look like Dravet syndrome
- Around 5%-10% of cases are inherited, meaning that one of the parents will test positive for the same SCN1A gene mutation, but will not have the disease themself
- Other genetic abnormalities have also been associated with Dravet syndrome. Genes not yet identified may be involved as well
What to expect with Dravet syndrome
Each person will have a different experience with Dravet syndrome, but seizures and developmental delays are typically part of the condition, with the types of seizures usually changing over a person’s lifespan.
Your primary source of care and information will be a neurologist. Do not hesitate to discuss any concerns you may have with them.
Seizures and complications in teens and adults
As children turn into teens and teens transition into adulthood, seizure types often change. While they may decrease in frequency, the majority of adult patients will still experience regular seizures.
*Seizures may still occur in teens and adults, but with less frequency.
Triggers differ from one child to the next. Possible triggers include:
How DIACOMIT can help
Effective seizure relief
DIACOMIT offers a chance to significantly decrease the number of seizures in patients with Dravet syndrome. Learn more about the efficacy and safety of DIACOMIT and see if it could be the right next step for your child.
DIACOMIT—designed specifically for Dravet syndrome
DIACOMIT is an FDA-approved antiepileptic treatment that is used along with clobazam, another type of antiepileptic drug, to help reduce the number of seizures in patients with Dravet syndrome. There are no clinical data to support the use of DIACOMIT by itself in Dravet syndrome.
20 YEARS OF REAL-WORLD USE
DIACOMIT was designated as an orphan drug for use in Europe in 2001 and granted approval by the FDA in August 2018 for the treatment of Dravet syndrome seizures.
Proven seizure reduction in clinical studies
In 2 placebo-controlled clinical studies, patients were treated with either DIACOMIT plus clobazam or placebo plus clobazam.
While the exact mechanism of action is unknown, DIACOMIT is believed to help reduce seizures through:
- Direct effects that are caused through the gamma aminobutyric acid (GABA)A receptors in the brain
- Indirect effects that inhibit enzyme activity, which leads to increased blood levels of clobazam
Common side effects
The most common side effects with DIACOMIT are sleepiness, decreased appetite, agitation, impaired coordination, decreased weight, decreased muscle tone, nausea, tremor, slurred speech, and trouble sleeping.
Daily life with Dravet syndrome
Growing up and forging ahead into adulthood
Every person will have a different experience with Dravet syndrome, so it’s important to become familiar with your teen’s or young adult’s individual needs and to design a lifestyle around them. Building routines and helping reduce their risk of seizures are top priorities.
Not an actual patient
Meeting the challenges of Dravet syndrome
Dravet syndrome and its management have an impact on almost every aspect of life, complicating simple daily activities and making spontaneous plans difficult.
Everyone will have a different experience with Dravet syndrome. It’s important to learn as much as you can about the disease, and track your child’s experience so that you can confidently plan ahead for every possibility and help decide what’s best at each step.
Caring for someone with Dravet syndrome may be a challenge, but planning and staying one step ahead can help relieve some of the stress.
Here are some things you can do to be prepared:
- Track all seizures and triggers. The free, comprehensive tools at seizuretracker.com can help make this job a lot easier
- Learn seizure first aid and teach it to your family and friends. Information and digital classes are available at no cost through the Epilepsy Foundation® at epilepsy.com
- Have a written family emergency response plan created in partnership with your doctor
- Have a rescue therapy on hand. Your doctor may prescribe a fast-acting anti-seizure drug for emergencies
- Stay on top of doctor appointments and medication management
- Consider the diet of your teen or young adult. Your doctor may suggest a ketogenic diet—a high-fat, low-carbohydrate diet that requires close monitoring by a doctor. Some common foods included in a ketogenic diet are:
- Low-carb vegetables like cauliflower, cabbage, broccoli, or zucchini
- Dairy products like cheese, plain Greek yogurt, or cottage cheese
- Nuts and seeds
- Coconut or olive oil
You may want to educate your family about the ketogenic diet so they can help your child stick to it.
Be sure to consult with your doctors before incorporating a ketogenic diet or other lifestyle changes into your child’s treatment plan. You may require input from various members of their healthcare team in order to address your child’s specific challenges.
Teens at home and in school
For any child, the teenage years are full of emotional highs and lows as their bodies change, and they yearn for independence. With Dravet syndrome, daily life may become even more complicated for your teen and your family. Support groups and camps for teens with seizure disorders allow them to interact with peers who understand what they’re going through and can be a big help.
Support to help your teen navigate their world
The majority of teens with Dravet syndrome have some degree of intellectual disability, behavioral issues, sleep difficulties, and motor impairments. That’s why finding an appropriate, supportive learning environment is very important, including a mental health provider or therapist that is skilled in working with patients with intellectual disabilities.
Your teen will likely need an individualized education program (IEP) to support their schooling. The IEP sets academic and cognitive goals designed specifically for your child. This plan may involve a behavioral therapist, along with occupational, physical, and speech therapy.
School personnel should be familiar with your teen’s diagnosis and know basic seizure first aid. They should also be familiar with seizure triggers and be aware of how to limit exposure. A seizure action plan should be available at the school, along with rescue medication if prescribed by their doctor.
Transitioning into adulthood
The characteristics of Dravet syndrome will likely change as your child transitions from teen to adulthood. The burden of seizures may decrease, but cognitive, behavioral, and social issues may continue. As the young adult’s needs become increasingly complex, adjustments will need to be made to their therapy and support. As adults, some people with Dravet syndrome are able to live independently, but the majority will continue to live with family or in a supported living environment.
Extracurricular activities to enhance your child’s life
Finding new and engaging activities for your young adult, like art or music therapy, physical activity, or a peer group, can help them develop their cognitive skills and their self-esteem. Support services may be available in your area to help make the leap from teen to adult, and new members may be added to your care team to help you manage the other conditions that often accompany Dravet syndrome. Speak with your doctor about other services available to you and your teen or young adult.
Guidance and support
Building your support system
Managing a rare disease like Dravet syndrome can cause caregivers and families to feel lonely and isolated. Seeking support and community from friends, family, or other caregivers can help when times are difficult or when you need a reminder of your successes.
Resources to help you and your child steer through challenges
Take advantage of our expanding collection of resources. You can read about Dravet syndrome, discover new ways of helping your child navigate life, or find a support group to connect with other families like yours.
Get involved through these Dravet syndrome resources: