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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 buddymarvel on Fri, 2008-08-22 - 18:03

Hi!

Being a husband and parent dealing with epilepsy it is not easy by any means. I don't have the experiences you are going through and can't really advise you. All I can say from reading your story is that your son is bound to be feeling aggitated and aggressive, it does impact on him what he is going through. You are right to think that you can't go back to work whilst he is still in this condition. You couldn't function anyway! You need some supportive help here to enable you to cope in everyway until this is sorted out to a reasonable level. Contact your GP, he may be able to help in the first instance

all the best 

 

 

Hi!

Being a husband and parent dealing with epilepsy it is not easy by any means. I don't have the experiences you are going through and can't really advise you. All I can say from reading your story is that your son is bound to be feeling aggitated and aggressive, it does impact on him what he is going through. You are right to think that you can't go back to work whilst he is still in this condition. You couldn't function anyway! You need some supportive help here to enable you to cope in everyway until this is sorted out to a reasonable level. Contact your GP, he may be able to help in the first instance

all the best 

 

 

Re: uncontrolled drop seizures

Submitted by TSL1221 on Fri, 2008-08-22 - 19:25
Thanks for your comment.  I do need some support and have very minimal right now. This site seems to be helping though.   My boyfriend has been a great support to both my children and myself and I thank God for him.  Tim's Daddy (my ex-husband) cannot deal with this and actually told my son to not let the seizures take over him.  He also made negative comments to me when I explained that Timothy must wear the special helmet the hospital ordered for us.  Tim likes the helmet - we showed him all the football players with them on and even some wrestlers on TV and he loved it!!!  I also warned Daddy to never say anything negative in front of Tim about the helmet!!!  I'll say this...When things like this happen, you really find out just how much support you really have.  People I thought would be here for me simply weren't and those few I never expected to help surprisingly helped.  I've never felt more alone and helpless than when we were in the hospital...because I have two children and care about them both and need to take care of them both.  My daughter ended up spending the night two nights with us at the hospital because I don't have alot of resources here (in New Orleans) after Katrina...all the children's family on their dad's side moved out of state and never returned and I'm not from here.  All of my family out of state, about a 1,000 miles away.  Thanks again.

Re: uncontrolled drop seizures

Submitted by Missyat on Mon, 2008-08-25 - 00:17

Hey,

 

Know that you are not alone, my son at the age of 4 was having 100's of drops a day. He could do nothing but sit on the sofa and seize.

 

He is now 11 years old and is having an average of 15 drops/jerks/absences a day he has not had a tc for just over a year now.

 

My son also wore a helmet, but would only wear his bike helmet and was very proud of it, but when you have 5 inches of snow on the ground and the grocery clerk asks "did you bike here?" a dozen times.... it does get a bit boring.

depakote did wonders for a little while on my son, but Keppra did not... it made him very hyper to the point he would not rest in any form besides totally passing out.

 

Right now he is on lamictal and ethosuximide (zarontin) plus he has the VNS. Like I said before he is down to 15 a day and they are lightening quick. 

 

 

Missy, mom to Kevin 10 Years old, Doose or MAE Myoclonic Astatic Epilepsy

Hey,

 

Know that you are not alone, my son at the age of 4 was having 100's of drops a day. He could do nothing but sit on the sofa and seize.

 

He is now 11 years old and is having an average of 15 drops/jerks/absences a day he has not had a tc for just over a year now.

 

My son also wore a helmet, but would only wear his bike helmet and was very proud of it, but when you have 5 inches of snow on the ground and the grocery clerk asks "did you bike here?" a dozen times.... it does get a bit boring.

depakote did wonders for a little while on my son, but Keppra did not... it made him very hyper to the point he would not rest in any form besides totally passing out.

 

Right now he is on lamictal and ethosuximide (zarontin) plus he has the VNS. Like I said before he is down to 15 a day and they are lightening quick. 

 

 

Missy, mom to Kevin 10 Years old, Doose or MAE Myoclonic Astatic Epilepsy

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