Juvenile epilepsy: Switching from Keppra to new med. Any experience?

@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

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?

Hi Terin,

My son had his first seizure when he was 8. He had another shortly after that. He was put on Depakote. Everything was good so summer before 8th grade we decided to take him off of meds. First day of school had another. back on meds until he was 18. Decided once again to take him off thought maybe he had grown out of it at this point. Did an eeg after being off meds for 3 months and it showed seizure activity. Back on Depakote. Fast forward to today he is now 24 and doing well (knock on wood). I still worry about him every day, but a kind doctor once told me to just let him live his life. She never had any restrictions for him. He still sees his epileptologist once a year and gets blood work done to check liver and bone health because of the depakote. It was hard to face the reality that seizures were going to be a part of his life, but he has accepted it, takes his meds and lives his life to the fullest.

@tlb101175 - how's your son doing lately?

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?

@lisalucier

He is doing well. He is still on the depakote, which I worry about long term but his doctor swears that there are a lot of people out there that still take depakote even though it is an old medication. He has a lot of cognitive issues because of it like the brain fog and memory loss but it seems like that is the case with all the seizure meds…he has photosensitive epilepsy so the depakote seems to keep it at bay (knock on wood) …don’t fix what isn’t broke right. Thank you for asking

@tlb101175 , Good Morning
I'm so happy to hear your son is doing well. 🙏
Indeed, there are lots of people with epilepsy on Depakote, as your son's doctor mentioned — including several of us here in our group.
I have temporal lobe epilepsy with mild mesial sclerosis in my left hippocampus, and I also face some cognitive issues, which I've learned to manage with the support of my neuropsychologist.
By the way, this could be a great new discussion to start in our group. The subject comes up scattered across many different threads, but doesn't have one of its own. What do you think about starting a discussion specifically on cognitive issues people with epilepsy face and how they cope with them?
And speaking of coping strategies — how has your son been dealing with his cognitive issues, and what has he adopted to better live with them?
Chris