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My 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 Dilantin and increased the depakote and topomax. Although he is not having the TC's , he still is having the Drops. Doctors added Tranxene and then Keppra. 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. Any advice from other concerned and/or experienced parents would be wonderful.
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Dear TSL GO IMMEDIATELY TO THE KETOGENIC DIET!!!!! Our son John has had a very similar clinical picture to your son Tim. His sz's started when he was 27 months old and he began having drop sz's day 2 of his long sz history, with other sz types including absence, head drops. At his worst he was having 6 drop sz a day. His diagnosis is MAE or Doose and after 3 drugs (phenobarb, zonegran and depakote) and 9 months of very little success, we went to the diet. His drop sz's stopped within 4 days on the diet and he only ever had one more in 2 and1/2 years on the diet. His other sz types were cut 95%. The diet is a little tough but well worth it as this type of epilepsy is SO drug resistant. Don't waste anymore time on drugs for the drop seizures!!!! Trust me on this one. Feel free to contact me at any time as we have been through the same heart ache as you. John is now 6 years old and off keto diet. He still has 1-4 sz a month but only at night and very brief tonic clonic. We are on very low dose lamictal and weaning this. Best of luck. Trust me, i am sure other Doose parents will tell you the same re drug therapy vs.keto diet!
How did you go on the Ketogenic Diet? What has to be done?
Thanks. I have been researching the Ketogenic diet and interested in checking with his epileptologist. We have an appt. Sept 2 and I plan to talk about this. I had no other choice but to return to work but our daycare is working wonderfully with us. Some good new is that Tim is now catching himself and can brace his fall most of the time. I also notice that his seizures are more frequent 1-2 hours after waking. Thanks again. I will let you know what happens.