Juvenile epilepsy

Posted by sg325 @sg325, May 23 6:32pm

Hello. My 14 year old daughter has experienced two convulsive seizures and daily myoclonic jerks/ twitches. She has been taking Keppra and her symptoms are controlled but her moods are so extreme it’s like she’s a different person.
She is not willing to switch medications because the doctor has warned of increased seizure risk during a transition. Does anyone have experiences to share? Thank you

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Profile picture for Leonard @jakedduck1

@natb23
I'm sorry to hear about your son's seizure disorder. The journey to achieving seizure freedom can be long and challenging for some, while others may never find it. I hope your son's doctors can find the right medication or combination of drugs to manage his seizures, or that they may resolve on their own.
I was around your son's age when I developed epilepsy in the late 1960s. Over the past 60 years, I've experienced more than 13,000 seizures, primarily Tonic-Clonic seizures, as well as absence seizures and both focal aware and focal impaired seizures. At times, I've been put into extended induced comas due to status epilepticus.
There are common-sense restrictions that you might be aware of, which may or may not apply to your son's situation. If you're experiencing stress or difficulties coping with your son's epilepsy, it's essential to manage any stress or anxiety, as your emotions can directly affect your son's development.
Encourage your son to live as fully and independently as possible. While safety is important, it shouldn't prevent him from engaging in normal activities. Being excessively protective can negatively impact a child's self-esteem, social development, and overall quality of life. By promoting independence and encouraging typical activities, while also establishing a seizure safety plan with family and friends, children with epilepsy can acquire essential life skills and lead fulfilling lives.
There was a study done at Stanford University that showed some patients have seizures when taking drugs from different manufacturers so the study recommends getting the same manufacturer with each refill. they also recommend if you're on a brand-name drug don't switch to a generic and vice versa. Why seizure stopped after 45 years when a new Neurologist had to change my medication because my previous one became unstable. He put me on an extended-release version of Carbatrol. In fact, my last Neurologist refused to give generic seizure medication's to patients unless there was no way around it. He strongly believed that seizure patients shouldn't take immediate-release medications if possible.
What type of seizures is your son having, generalized or focal?
Do you know his diagnosis?
Take care,
Jake

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Hi @natb23
Welcome to our Connect community! I hope you'll find the support and understanding you're looking for here.
I'm also sorry to hear about your son's seizure disorder and the struggles you're facing.
It's not easy for mothers to navigate this initially, but I believe there are ways to find a balance between fostering independence and providing appropriate care.
I've found some testimonials in this Epilepsy Team article that beautifully reflect the same perspective @jakedduck1 has shared:
“Give them confidence, strength, and independence. That is what my mother did for me. I started getting complex partial seizures when I was 12. Now I am 52. I worked. I didn’t let epilepsy take over my life. Don’t let your child give up in life.”
“As a child who had epilepsy, the most important thing to me, at that time, was to know that I was loved for who I am. My parents always encouraged me to look on the bright side despite the seizures and reinforced that everything was going to be OK!”
Here's the link to the full article: Epilepsy Team - Transition to Adulthood
https://www.myepilepsyteam.com/resources/the-epilepsy-transition-to-adulthood-how-to-help-your-child
You mentioned you're not doing well. Have you considered seeking therapeutic support to help you navigate this difficult time with your son? Sometimes, having professional guidance as well as connecting with other parents in similar situations can make a real difference.
Take care!
Chris

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My 15 year old son had his first tonic clonic seizure in January 2025, he has had 3 more since then. They started him on lamotrigine after his first seizure, we weaned him off of it in June because he had been seziure free and thought the seizure was caused from him being sick with a high fever the week before it happened. Come July he had a second seizure so they started him on keppra and has had two more seizures since we started keppra, we now are introducing lamotrigine back along with his keppra still. Could his seizures be caused from metabolic issues or going through puberty? Are the drs maybe misdiagnosing him with lack of nutrients and vitamins? He has been a healthy kid his whole life, no head trauma, no tbi or family history of seizures so I’m just wondering why now and if he will grow out of this?

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Profile picture for terin82 @terin82

My 15 year old son had his first tonic clonic seizure in January 2025, he has had 3 more since then. They started him on lamotrigine after his first seizure, we weaned him off of it in June because he had been seziure free and thought the seizure was caused from him being sick with a high fever the week before it happened. Come July he had a second seizure so they started him on keppra and has had two more seizures since we started keppra, we now are introducing lamotrigine back along with his keppra still. Could his seizures be caused from metabolic issues or going through puberty? Are the drs maybe misdiagnosing him with lack of nutrients and vitamins? He has been a healthy kid his whole life, no head trauma, no tbi or family history of seizures so I’m just wondering why now and if he will grow out of this?

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@terin82
Yes to your first three questions although how often I wouldn't know. However, your doctor should have done blood tests to rule those issues out although you may want to ask him if a vitamin & mineral profile test was done.
JME is seldom if ever grown out of. 50% of epilepsy patients never know the cause. Even if it was a genetic cause and genetic testing was done don't always show up so in my opinion it's best to accept the conditionand not worry about the cause, just. Concentrate more on controlling the seizures. Did you ask his doctor these questions?
Does your son have my myoclonic jerks prior to his seizures?
Take care,
Jake

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