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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 yellowcarer on Thu, 2009-04-09 - 12:45

hi how are you getting on?

my daughter is 8 yrs old, before she was diagnosed she was averaging between 40 and 60 drops a day. she is now on a cocktail of epilim, tegretol and clobozam and has a helmet. she currantly has between 10-15 drops on good day and 15-25 on bad. she is also aggressive and very tired. i have just been told today that she is going to have a corpus callosotomy op on june 19th this year. this surgery is to seperate the 2 halves of her brain to stop the seizure message crossing the brain therefore reducing the drop attacks by 80-90%.

i pray that this will help,i am a single mum with another child too.

i hope all is working out for you,

nikki

hi how are you getting on?

my daughter is 8 yrs old, before she was diagnosed she was averaging between 40 and 60 drops a day. she is now on a cocktail of epilim, tegretol and clobozam and has a helmet. she currantly has between 10-15 drops on good day and 15-25 on bad. she is also aggressive and very tired. i have just been told today that she is going to have a corpus callosotomy op on june 19th this year. this surgery is to seperate the 2 halves of her brain to stop the seizure message crossing the brain therefore reducing the drop attacks by 80-90%.

i pray that this will help,i am a single mum with another child too.

i hope all is working out for you,

nikki

Re: uncontrolled drop seizures

Submitted by riahli on Fri, 2010-04-30 - 00:48
My son has uncountable drop attacks daily right now and has tried 6 meds, currently on three.  We just started the modified atkins diet for seizures while waiting to get on the ketogenic diet.  Have you heard of either of these?  It's worth researching.  It's not an easy diet, but it really has worked for lot's of kids with uncontrollable seizures. and I'm hoping my son will be one of them.

Re: uncontrolled drop seizures

Submitted by riahli on Fri, 2010-04-30 - 00:52
Ha that's funny...you've already had success with the Modified Atkins diet...awesome! Guess I should have checked that first before commenting. :)

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