Has anyone had experience with a small child taking more than the daily recommended amount of Onfi for their seizures?
My child is nearly four, about 30 pounds and is going up to 5 ml twice a day from 4 ml twice a day which I believe maths out to 25 mg. The Onfi site recommends no more than 20 mg per day under 66 lbs due its lack of effectiveness vs side effects.
So what I’m wondering, is this med adjustment worth it? My child has focal seizures caused by brain damage to the occipital and parietal lobes. Their seizures have improved greatly on Onfi only occurring a few times a year but can cluster out of control. Emergency meds don’t really work on him so we try to avoid seizures when possible. He also takes Oxcarbazepine which we aren’t entirely sure does anything but right when we get to the point of discussing weaning he has another seizure and we keep putting it on the back burner.
I’d love to hear any experiences. We’ve discussed a VNS device with neurology in the near future but I’m on the fence about it. We’ve also discussed taking out the Oxcarbazepine and moving to Vimpat. He took Vimpat as an infant as a companion to Keppra without any noticed seizures. He began having seizures as soon as he weaned onto only Keppra. So I think I’d lean towards trying Vimpat again plus Onfi in the near future if anyone has experience with that??
Thanks!!!