Your Child's Treatment Options for Dravet Syndrome or Lennox-Gastaut Syndrome

This article is for parents and caregivers of children who are living with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), or anyone who wants to learn more about these conditions. The goal of this activity is to help you talk to and work with your child's doctor and healthcare team about ways to help to manage seizures.

You will learn about:

• What DS and LGS are

• Symptoms of DS and LGS

• Ways to help manage DS or LGS and its symptoms

• Medicines to help control seizures

• Making a treatment plan with your child's doctor and healthcare team, and questions you can ask

Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS) are 2 different types of severe, rare epilepsy that start in childhood. With either condition, children can have seizures that may happen throughout their life and can be hard to control.

DS is caused by a gene mutation (a change in the information inside cells that determines traits). For most people, this mutation happens by chance and is not inherited, or passed on, from their parents.

LGS can have several different causes and may happen because of another condition. These conditions can include when a part of the brain doesn't develop properly; not getting enough oxygen before birth; an infection during pregnancy or birth; a stroke; or an injury. In some cases, though, no known cause is found.

While DS and LGS can both have seizures that are hard to control, they usually have different types of seizures. DS and LGS can also have other symptoms that are different.

With DS, seizures tend to have a trigger, such as a fever or overheating, bright lights, stress, too much excitement, or diet. Children may also have problems with communication and learning (after age 1) and muscle control and movement (age 6 and older).

With LGS, children can have multiple types of seizures. They may also reach certain developmental milestones and then lose skills they already had, such as sitting, crawling, or walking. Some children can also have learning problems that can get worse over time and problems with behavior.

While there's no cure for DS or LGS, there are ways to help manage these conditions and their symptoms. This can include treatments that may be used in combination such as:

• Medicines

• Lifestyle changes, such as diet

• Devices or procedures

• Therapy to help with speech, daily skills (occupational therapy), movement (physical therapy), behavior, and mental well-being

Which treatments your child's doctor may recommend will depend on whether your child is living with DS or LGS and other factors such as their age, other conditions they may have, their seizure type and severity (how bad they are), and other symptoms they may have.

One of the main goals of treatment will be to help control seizures, and there are a number of different medicines that your child's doctor may recommend, alone or in combination.

Types of medicines can include:

• Antiseizure medicines such as such as felbamate, fenfluramine, lamotrigine, rufinamide, stiripentol, topiramate, or cannabidiol (CBD) as a specific form in a medicine

• Central nervous system (CNS) depressant medicines called benzodiazepines, such as clobazam

All medicines may have side effects. So another goal of treatment will be to find the combination of medicines that helps control your child's seizures, but has the fewest side effects.

Some possible side effects that may happen can include:

• Drowsiness, sleepiness, fatigue (tiredness), lack of energy

• Sleep problems

• Digestive system problems such as lowered appetite or weight, diarrhea, constipation, nausea, vomiting

• Problems with body movements

• Changes in blood pressure, dizziness, falls

• Infections

• Drooling

Not all side effects are listed here. Ask your child's doctor or healthcare team member in advance about which ones may happen with the medicines your child is taking and how to manage them.

Together, you and your child's doctor and healthcare team can make a treatment plan that best fits your child's individual needs.

Seizures may be hard to control, so it can take time to find the right combination of treatments. But it's important to stick to your child's plan, especially since certain treatments may take time to work or for side effects to go away. Don't stop or change any treatment without talking to your child's doctor first.

Your child's doctor will watch their condition and how they respond to treatment closely. Ask them about what to look for so you can track and record their symptoms and any side effects for when you talk.

Your child's doctor may also recommend seeing other healthcare team members and specialists. This may include neurologists or pediatric neurologists, surgeons, mental well-being team members, social workers, and therapists for behavior and occupational, physical, or speech therapy.

Your child's treatment plan should also include what to do in case of a seizure emergency. Ask your doctor and healthcare team about ways you can talk to family, friends, and caregivers -- such as teachers and babysitters -- about their plan.

Questions you can ask about DS and LGS can include:

• What treatments are available, what are their possible side effects?

• How will we know if treatment is working?

• What should I look for to help track and record my child's symptoms?

• Are there any specialists or other healthcare team members we should see?

• Is there a support group we can join?

• What should I do if I or my child starts to feel stressed or depressed?

• Where can I find more information and resources?

Congratulations!

You have successfully completed the program Your Child's Treatment Options for Dravet Syndrome or Lennox-Gastaut Syndrome.

View Additional Materials on this topic that you may find useful:

Dravet Syndrome

What Is Dravet Syndrome?

Lennox-Gastaut Syndrome

What Is Lennox-Gastaut Syndrome?