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Mom's of kids with seizures?

DS had his 3rd seizure monday since last december.  Monday was a bit different and he had a harder time coming out of it.  He got phenobarbitol and is still really unsteady and a bit agitated.  The docs say it takes a long time to come out of the system.  He started Keppra yesterday, and the docs (and us) are optimistic this is something he will outgrow.  I'm nervous and looking to learn from your experiences out there...

Re: Mom's of kids with seizures?

  • Well, my girls have seizures- but they are "different".  It's not the same as a typical seizure.  But I still know what it's like to have a DC with seizures. 

    I'm sorry your very cute DS is having to go through that.  Hopefully he will outgrow it! (the type my girls have- they too will outgrow).

     GL and keep us updated!

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  • My son is on Keppra, he takes 3mL every 12 hours.  He's had 9 brain surgeries and has never had another seizure since starting the Keppra.  Of course, my son's seizures are due to his tumor and it's biopsy.
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  • My son has been on Keppra since June. He had a round of infantile spasms a year ago (treated w/ACTH), then had two partial atonic seizures which is when he was put on Keppra. He's been seizure free since and we haven't noticed any side effects. The cause of my son's seizures is currently undiagnosed other than kids that have infantile spams (of which the cause is unknown) normally develop other seizure types.

    Good luck.

  • My DD has had 2 series of seizures since birth.  She had 2 when she was 2 wks and then I think 10 when she was 5 months.  She is currently on Keppra and hasn't had another episode since starting the medication.  She has had 2 EEG's, CT Scan, MRI, countless blood tests and everything has come back normal.  The current plan is to meet with our neurologist every 3 months to adjust her medicine if necessary and check for any developmental delays.  They want her to go 2 years seizure free before we talk about weaning her from the medicine.

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  • my ds was put on keppra, but it does not seem to be working for him. he has had four "staring spells" that the docs think might have been partial seizures since they were unable to capture one on the video eeg this week. he had his first convulsive seizure since 11/15 this morning. so, i guess we are back to square one. at this point, we have had over 120 hours of video eeg, a traditional eeg, an mri, and countless blood panels. i hope we find something that works for him soon...good luck!
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