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uncontrolled drop seizures

Fri, 08/22/2008 - 13:49

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 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

Comments

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.

Re: uncontrolled drop seizures

Submitted by nogal182 on Wed, 2008-10-22 - 14:36
This may not help you, but I have grand mal and myclonic seizures. I am 25 and I have had the myclonic seizures now for 7 years.  What tends to help me other than my two medications (Keppra and Topamax); is to stay out of high stress situations, to not be around a lot of fluorescent lighting, or staring at anything for a long period of time.  I also know due to the seizures that it will build up acid in the muscles and it makes it hard to sleep; which in retrospect will sometimes cause the myclonic seizures. Once you find the correct dosage for Timothy, he should start to feel better and the falling should decrease over a week to two weeks. In my case the violent falls changed to violent hiccups that warn me if grand mal seizure is about to happen.

Re: uncontrolled drop seizures

Submitted by kimquytu on Wed, 2009-04-08 - 21:18
My son started having drop seizures for the last 2 1/2 months too, averagely about 15 times per day. At first he only had a few drop seizures a day, but while the doctor was waiting for the EEG result without giving him anti-seizure medication, he had a grand-mal seizure, so they put him on Keppra 1000mg per day, but it didn't control his drop seizures. Next, they put him on Trileptal 600 mg a day on top of the Keppra, but it didn't control the drop seizures as well (still 15 drop seizures per day, although the duration seems shorter).  (His EEG result also showed slow diffused waveform with discharged spikes, which suggested Doose syndrome). Anyway, I noticed that walking really help him a lot (Once he had a drop seizure, I immediately took him for an hour walk and he stop having another drop seizure for about an hour). When he first wake up in the morning, he has more drop seizures. So now, when he first wake up, I take him for an hour walk around the house (while feeding him the Keppra & Trileptal). That seems to control his seizures.  With enough walking throughout the day (i.e 3 times a day, 1 hour each time), the last week he didn't not have a drop seizure. Yesterday it's raining so I didn't take him for a morning walk & he had about 4 drop seizures. So, I am working back up on improving him again. This time I do hope walking helps me please! :)

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