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uncontrolled drop seizures
Fri, 08/22/2008 - 13:49My 4 1/2 year old son, Timothy, is having drop seizures... still. He has had 5-15 a day for the last week that we've been home (from a week long hospital stay due to tonic clonic seizures). Tim was recently diagnosed with secondary generalized seizures, atonic and myoclonic seizures on June 15, 2008 and was doing fine on Depakote and Topomax for about four weeks. We were weaning him off Depakote and he began having tonic clonic seizures again around the 4th week of weaning (end of July). (Tim had about 3 tonic clonics over a four day period and was rushed to emergency on the last one where we were admitted Aug. 3rd). He had 3 tc's at home then while in the ER he had 2 back to back. ER admitted him gave him atavan (sp?) to stop the back to backs and then gave him Dilantin while they increased the depakote and topomax. (but we did not stay on the dilantin). Doctors added Tranxene and then Keppra. Although he is not having the TC's , he is still having the Drops. Since we've been out of the hospital and having the drops the doctors have increased Keppra over this last week to the max dose and have asked me to try this until Monday to rule out Keppra and discuss then a new drug. So far today Tim has had 7 drops that I've seen and noted. I'm a single mom and I've missed 3-4 weeks of work and Tim is on 4 different meds and still dropping to the point I don't feel comfortable going back to work while these seizures seem so out of control. I'm glad there not the tc's, but wonder if it's just a matter of time. I've also noticed that he is gaining weight and irritable/angry and more aggressive and definitely more of a challenge to discipline. I'm worried about the affects on his brain and body from him having so many of the drops for a week now. Any advice from other concerned and/or experienced parents would be wonderful.
Timothy's Mom
Re: uncontrolled drop seizures
Submitted by TSL1221 on Thu, 2008-08-28 - 06:49
Frustrating to say the least!! With each new medicine I hope and pray for some progress but see very little then realize this is just one more drug we'll have to wean off of. I had no choice but to return to work so Tim is in daycare with the daycare staff following "seizure precautions". His teacher has been great and keeps him close and writes down any episodes for me and/or calls me. I call throughout the day though to check on him. They probably get frustrated with me calling so much, but it's constantly on my mind. Fornturnatley, the daycare is very close to my job so if he had a seizure over 5 minutes and I needed to I could get there in time to give him the diastat (because apparently they can't give it to him). My experience with the ambulance and the time it takes them to get here has not been very satisfactory. Another member on this site said to try the ketogenic diet, that it improved her child's seizures 95% and these types of seizures are very difficult to get under control. Thanks for writing and letting me know I am not alone. Feel free to contact me anytime.