Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 Mon, 2008-08-25 - 08:15

Thank you for sharing.  Wow hundreds a day?! The most we've noticed in a day for Tim so far is 22 and I thought that was high.  Tim has been on the sofa a lot lately too because although he wears the helmet (most of the time), his chin has taken a beating due to the sudden drops out of no where, his poor knees and arms too. :(

Did your son have any developmental issues after seizures and medicine? Although my son has hit all his developmental milestones, he talks slower now, but I don't know if it is from seizures or medicine.  He does have a droopy loopy look in his eyes since being on the medicine though which I hate.   

Thank you for sharing.  Wow hundreds a day?! The most we've noticed in a day for Tim so far is 22 and I thought that was high.  Tim has been on the sofa a lot lately too because although he wears the helmet (most of the time), his chin has taken a beating due to the sudden drops out of no where, his poor knees and arms too. :(

Did your son have any developmental issues after seizures and medicine? Although my son has hit all his developmental milestones, he talks slower now, but I don't know if it is from seizures or medicine.  He does have a droopy loopy look in his eyes since being on the medicine though which I hate.   

Re: uncontrolled drop seizures

Submitted by frhale on Thu, 2009-04-09 - 16:28

My 3yr old started having Grand Mal back in Sept. He is on Clonazapam 3x a day Felbatol 3x a day and Kepra

2x a day and still having drops and droopy eyes and lathargic. We started the Ketogenic Diet last week and have seen a dramatic improvement. More energy and very few drops. Just a couple a day down from 50-60 a day.

My 3yr old started having Grand Mal back in Sept. He is on Clonazapam 3x a day Felbatol 3x a day and Kepra

2x a day and still having drops and droopy eyes and lathargic. We started the Ketogenic Diet last week and have seen a dramatic improvement. More energy and very few drops. Just a couple a day down from 50-60 a day.

Re: uncontrolled drop seizures

Submitted by jakerdoodle on Tue, 2008-08-26 - 19:34

Timothy's mom,

 I have a 3 year old son and starting August 1st of this year our Epilepsy journey began.  i swear you could have written "our story" except for some slighly different meds we have the EXACT same story.

 I have counted 6-7 drops today, this after cutting open his chin twice because of drops, one resulting in 8 stitches the other butterfly bandages to seal where he just had stitches.

 

I guess all this is just trying to get the correct "medicine cocktail", but geez it is frustrating. 

I am on the FMLA right now until I can trust myself sending him to his caregiver again.

To top things off our helmet is sittig in the doctors office, but doctor has not submitted paperwork to insurance yet!

 

Good Luck! and you're not alone!!

Timothy's mom,

 I have a 3 year old son and starting August 1st of this year our Epilepsy journey began.  i swear you could have written "our story" except for some slighly different meds we have the EXACT same story.

 I have counted 6-7 drops today, this after cutting open his chin twice because of drops, one resulting in 8 stitches the other butterfly bandages to seal where he just had stitches.

 

I guess all this is just trying to get the correct "medicine cocktail", but geez it is frustrating. 

I am on the FMLA right now until I can trust myself sending him to his caregiver again.

To top things off our helmet is sittig in the doctors office, but doctor has not submitted paperwork to insurance yet!

 

Good Luck! and you're not alone!!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.