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Restarting AED after weaning off earlier in year
Mon, 10/16/2006 - 13:00Topic: Parents & Caregivers
Hi. Our son was taking 500 mg/day of Lamictal and 500 mg/day of Zonegran. Beginning Jan. 1 of this year we starting weaning him off his meds since his neuro said after 5 years seizure free it was time. He was fine until the last month of the wean (taking 50 mg/day of Lamictal). He had two simple partials, and then a generalized seizure last week afte being off the meds for only 9 days!
Here's the question. Has anyone had a child or themselves, who were taken off meds, had a seizure and needed to restart meds but were able to discontinue the meds later and be seizure free? I know that there is no way to know if our son will outgrow this but we hope. He's been on meds since he was two and he turns 14 in 3 weeks.
Thank you for reading my post.
Alison
Hi Alison, Let's see.. I
Submitted by solis on Mon, 2006-10-16 - 14:57
Hi Alison, Let's see.. I began my seizures at age 3 (Simple and Complex Partial TLE), and now have a 23 year old son, so I trust I qualify to reply. A neurologist also took me off meds when I was a child, & the seizures returned. Epilepsy is, for the most part, like diabetes (aside from the FEW childhood cases that are known to be outgrown). Unless one has surgery or some other physical change, one who has epilepsy will (most likely) need AEDs for the rest of their lives. The lucky thing is that, today, 75% of those with E are perfectluy controlled on AEDs. A loving parent can inwardly hope things change for their child, but please don't tell them that. Tell them you accept them no matter what and are behind them in love and support. My mother was told I might outgrow TLE and she lived via that promise. I never outgrew them; and, to this day, decades later, it's still impossible to feel close to a mother than never accepted me. So, please stop focusing on nixing the E and concentrate on getting him completely controlled again. As the saying goes "whatever will be will be"... and we need to focus on the here and now, appreciating each day, rather than spending our time planning for the future. Wish you well.. & wish your son luck, ~sol