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Juvenile Myoclonic Epilepsy
WHAT YOU NEED TO KNOW:
Juvenile myoclonic epilepsy (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.
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.
Call your child's doctor if:
- 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.
- Antiepileptic medicine may be given to help control the seizures. Your child may need medicine daily to prevent seizures. Do not let your child stop taking his or her medicine unless directed by a healthcare provider.
- Give your child's medicine as directed. Contact your child's healthcare provider if you think the medicine is not working as expected. Tell him or her if your child is allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs your child takes. Include the amounts, and when, how, and why they are taken. Bring the list or the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency.
Prevent a complication of 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 you can do to help prevent your 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 you can do to manage your 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.
Follow up with your child's healthcare provider as directed:
Write down your questions so you remember to ask them during your child's visits.
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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.