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Juvenile Myoclonic Epilepsy
WHAT YOU NEED TO KNOW:
What is juvenile myoclonic epilepsy (JME)?
JME is a type of epilepsy that causes myoclonic seizures (muscle jerks). A seizure is an episode of abnormal brain activity. JME usually starts between the ages of 5 and 16 years. Your child may have absence seizures first. An absence seizure causes your child to stare without being aware of his or her surroundings. He or she may develop muscle jerks within 9 years of the first absence seizure. Generalized tonic-clonic seizures (convulsions) usually start a few months later.
What are the signs and symptoms of JME?
- Muscle jerks or twitches in the arms or shoulders that start when your child wakes
- A sudden stop in talking or doing something
- Blankly staring ahead and not responding when spoken to
- Repeated movements, such as lip-smacking or eyelid fluttering
- Trouble learning in school because of absence seizures
How is JME diagnosed?
Your child's healthcare provider will ask about your child's health conditions and what medicines he or she takes. The provider will ask for a detailed description of your child's seizure. If you did not see the seizure happen, try to bring someone with you who did see it. Your child may also need any of the following:
- An EEG records the electrical activity of your child's brain. It is used to find changes in the normal patterns of his or her brain activity.
- CT or MRI pictures may be used to check for abnormal areas. Your child may be given contrast liquid to help his or her brain show up better in the pictures. Tell the healthcare provider if your child has ever had an allergic reaction to contrast liquid. Do not let your child enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if your child has any metal in or on his or her body.
- A PET scan is used to see activity in areas of your child's brain. Your child will be given radioactive material that helps healthcare providers see the activity better.
- A SPECT scan uses radioactive material to find where the seizure started in your child's brain. This scan may be done if other scans do not show where the seizure started.
How is JME treated?
The goal of treatment is to try to stop your child's seizures completely. He or she may need any of the following:
- Medicines will help control seizures. Your child may need medicine daily to prevent seizures or during a seizure to stop it. Do not let your child stop taking his or her medicine unless directed by a healthcare provider.
- A ketogenic diet may be needed to control your child's seizures if medicine does not work. The diet may be suggested by your child's healthcare provider and monitored by a dietitian.
What else do I need to know about JME?
Sudden unexplained death in epilepsy (SUDEP) is a rare complication of epilepsy. In 1 year, 1 child in 4,500 children with epilepsy will have this complication. The risk of SUDEP increases if your child has 3 or more generalized tonic-clonic seizures in 1 year. Your child's healthcare provider may recommend a change in medicine to decrease the number of seizures.
What can I do to help prevent my child's seizures?
You may not be able to prevent every seizure. The following can help you and your child manage triggers that may make a seizure start:
- Have your child take his or her medicine every day at the same time. This will also help prevent medicine side effects. Set an alarm to help remind you and your child to take the medicine every day.
- Help your child manage stress. Stress can be a trigger for JME seizures. Encourage your child to exercise. Exercise can help reduce stress. Talk to your child's healthcare provider about safe exercises for your child. Illness can be a form of stress. Offer your child a variety of healthy foods and give plenty of liquids during an illness. Talk to your healthcare provider about other ways to help your child manage stress.
- Set a regular sleep schedule. A lack of sleep can trigger a JME seizure. Try to have your child go to sleep and wake up at the same time every day. Keep your child's bedroom quiet and dark. Talk to your child's healthcare provider if he or she is having trouble sleeping.
What can I do to manage my child's epilepsy?
- Keep a seizure diary. This can help you find your child's triggers and avoid them. Write down the dates of the seizures, where your child was, and what he or she was doing. Include how your child felt before and after. Possible triggers include illness, lack of sleep, hormonal changes, lights, or stress.
- Create a care plan. Talk to your child's family, friends, and school officials about the epilepsy. Give them instructions that tell them how they can keep your child safe during a seizure. Have them contact you if your child has several seizures in a row or they start to last longer.
- Ask what safety precautions your child should take. Talk with your adolescent's healthcare provider about driving. Your adolescent may not be able to drive until he or she is seizure-free for a period of time. You will need to check the law where your adolescent lives. Also talk to healthcare providers about swimming and bathing. Your child may drown or develop life-threatening heart or lung damage if a seizure happens in water.
- Have your child carry medical alert identification. Have your child wear medical alert jewelry or carry a card that says he or she has epilepsy. Ask your healthcare provider where to get these items.
Call your local emergency number (911 in the US) for any of the following:
- Your child's seizure lasts longer than 5 minutes.
- Your child has trouble breathing after a seizure.
- Your child has diabetes and has a seizure.
- Your child has a seizure in water, such as in a swimming pool or bath tub.
When should I call my child's doctor?
- Your child has a second seizure within 24 hours of his or her first.
- Your child is injured during a seizure.
- Your child is depressed or anxious because he or she has epilepsy.
- Your child's seizures start to happen more often.
- Your child is confused longer than usual after a seizure.
- You have questions or concerns about your child's condition or care.
Care AgreementYou have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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