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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 cccougar on Sun, 2009-12-27 - 02:58

My son is 17 and having drop seizures which have graduated from every other type of seizure. I have been told that there is no medication that can control drop seizures which is quite a problem as he is 6 foot 7 and 230 lbs - so when he falls he falls really hard. Even though I have been told to put a helmut on him I am refusing. I just can't do that to a 17 year old sports jock kid. We just went thru 2 horrific years with depression and suicide and I can't now tell him to put on a helmut as it would take us right back to that horrible time two years ago.  I want to tell anyone out there reading this to please read everything there is to read about Keppra before putting their child on it. It is commonly known as "keppra's rage" which the doctor will not tell you. (look it up on the net - keppras rage) It induces depression, severe physical aggression, psychotic behavior, suicidal tendancies - changes personality totally. It was the worst time in this whole horrible epilepsy ride - but luckily after two weeks off it he turned back into the gently kind giant that he had always been. Avoid it at any cost.  He told me he used to lie there at night thinking about stabbing his brothers....it was a nightmare.

We have just found out that he is never allowed to drive any type of vehicle, ever. He cannot scuba dive which rules out his lifelong passion to be a Marine Biologist. He cannot be in any position of control over anything electrical. He is very limited in his life choices now. It seems to just get worse - the whole picture - every year.

My son is 17 and having drop seizures which have graduated from every other type of seizure. I have been told that there is no medication that can control drop seizures which is quite a problem as he is 6 foot 7 and 230 lbs - so when he falls he falls really hard. Even though I have been told to put a helmut on him I am refusing. I just can't do that to a 17 year old sports jock kid. We just went thru 2 horrific years with depression and suicide and I can't now tell him to put on a helmut as it would take us right back to that horrible time two years ago.  I want to tell anyone out there reading this to please read everything there is to read about Keppra before putting their child on it. It is commonly known as "keppra's rage" which the doctor will not tell you. (look it up on the net - keppras rage) It induces depression, severe physical aggression, psychotic behavior, suicidal tendancies - changes personality totally. It was the worst time in this whole horrible epilepsy ride - but luckily after two weeks off it he turned back into the gently kind giant that he had always been. Avoid it at any cost.  He told me he used to lie there at night thinking about stabbing his brothers....it was a nightmare.

We have just found out that he is never allowed to drive any type of vehicle, ever. He cannot scuba dive which rules out his lifelong passion to be a Marine Biologist. He cannot be in any position of control over anything electrical. He is very limited in his life choices now. It seems to just get worse - the whole picture - every year.

Re: uncontrolled drop seizures

Submitted by TSL1221 on Fri, 2010-01-01 - 01:27

cccougar, my heart goes out to you and I am sincerely praying for you and your son. My son and I went through some similiar experience with the helmet and psychological side effects from the drugs.

I am happy to report that my son is seizure free since April 2009 and medicine free since September 2009.  I started him on the Modified Atkins for Seizures Diet in February 2009.  After about two months the diet began to work for him.  Please research this diet.  www.atkinsforseizures.com It's been a long and difficult journey but we are doing well.  On our next visit to our epilieptologist in March 2010 we will discuss weaning of the diet.

cccougar, my heart goes out to you and I am sincerely praying for you and your son. My son and I went through some similiar experience with the helmet and psychological side effects from the drugs.

I am happy to report that my son is seizure free since April 2009 and medicine free since September 2009.  I started him on the Modified Atkins for Seizures Diet in February 2009.  After about two months the diet began to work for him.  Please research this diet.  www.atkinsforseizures.com It's been a long and difficult journey but we are doing well.  On our next visit to our epilieptologist in March 2010 we will discuss weaning of the diet.

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