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Juvenile epilepsy
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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Hello, 4year old child with serzure about not more than 2 minutes and stops,in aday like 2 to 4times aday.was started 4 months ago
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2 Reactions@hassankusow
Good afternoon,
What type/s of seizures is he having. Is he on any antiseizure medication?
If so, has it helped?
Take care,
Jake
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3 Reactions@hassankusow
Hi, Good Evening
I understand you are new here. Be very welcome to this very supportive group at Mayo Clinic Connect where members help one another and we learn a great deal together.
I am very sorry to hear about your child, and I can imagine how hard this has been for you.
What kind of doctor has been treating your child: neurologist or epileptologist? Are all his seizures convulsions?
Please tell us more so that we can offer you our helping hand.
Kind regards,
Chris
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3 ReactionsYes, if you haven’t already, please try to get your child evaluated at an epilepsy center and one which studies epilepsy in children. Depending upon where you live, this may not be easy, but I think that, it will lead to more effective treatment for your child. And likely save you time and worry in the long run.
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4 ReactionsI am very sorry that your family is having to deal with this. This group is an excellent place for support and education. The Mayo Clinic and Epilepsy Foundation websites are two other sources to learn more about seizure disorders.
Video a seizure and show it to an epileptologist specializing in childhood seizures for a full evaluation.
I pray you find a "quick fix" and this gets behind you fast. Stay positive, you'll get there.
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4 Reactions@hassankusow
Good Morning
I just remembered a movie that might be helpful to you. It is called "First Do No Harm," starring Meryl Streep. It tells the true story of a child who was cured of his epilepsy using the Ketogenic Diet. It is available for free on YouTube: https://www.youtube.com/watch?v=tHZnuhqVTgY&t=3552s
I am also sending you a link to the Charlie Foundation with some more details on this movie and about this foundation: https://charliefoundation.org/tims-story-first-do-no-harm/ ; https://charliefoundation.org/about-the-charlie-foundation-for-ketogenic-therapies/
Keto Diet can cure epilepsy in children. So there is hope for your child!
Chris (@santosha)
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2 Reactions@sg325
Regarding Kepra, I strongly recommend that your daughter considers taking Vitamin B6. Many people report significant relief from Keppra rage with B6, so it’s definitely worth trying.
Life inherently involves some risks. In my view, experiencing a seizure is a minor trade-off for the benefits of improved seizure control and a better side effect profile. While her doctor may not be certain about the likelihood of seizures during a medication change, it’s important to acknowledge that the risk does increase. However, the method in which the doctor manages the switch plays a crucial role in determining the degree of that risk.
Take care,
Jake
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3 ReactionsThank you for your reply, she is taking 100mg of B6 with each dose. I have not noticed any benefit to her moods
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2 Reactions@sg325
Welcome to our community!
It looks like your daughter might be having Keppra rage, a side-effect of this medication.
Keppra rage refers to sudden, intense episodes of irritability, aggression, and behavioral changes that can occur as a side effect of levetiracetam (Keppra),
I am adding here the link to a discussion on Keppra in our group: https://connect.mayoclinic.org/discussion/seizure-1/
Have you reported this side-effect to your daughter's doctor?
All my best!
Chris (@santosha)
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2 ReactionsHi,
If you search up my responses, I have commented a lot on our experience with Keppra.
My daughter 's life was completely derailed by a sudden onset of epilepsy during college so it was difficult to know if her mood and suicidality were worsened by Keppra or simply situational. After two years of dealing with that, she had a major grand mal and her Keppra dose was quadrupled. There was absolutely no doubt at that point that Keppra was making her worse. Mayo responded immediately by admitting her for a med change with significant psychiatric care. This is the only way I would do a med change from now on.
In the Epilepsy Monitoring Unit, they had her hooked up to a continuous EEG with video and audio recording. She had a 1 to 1 staffing ratio so someone was in her room 24 hours a day (although this might have been due to the suicidality and not a typical practice in the EMU). They handled the med change with the absolute most efficiency and safety, plus they got lots of data. We ended up on Trileptal (she was always on that), Lacosamide, and Briviact. Briviact is what actually stopped a grand mal she had in the EMU so they gave her an IV with it to get her blood levels up immediately instead of it taking a long time.
End of story, it is very possible Keppra is causing mood issues and going through a med change in the EMU is fast, safe, and informative.
Heather
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4 Reactions