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.
seeking VNS input
Fri, 03/01/2013 - 14:21Topic: Living With Epilepsy - Youth
Hi, I am considering VNS implant for my 9 1/2 yr old son, under the advisement of his neurologist and I am seeking any input anyone has to offer, both good and bad. He has had complex partial seizures since he was 22 months old, started on Keppra which did fabulous for the seizures however put him in his own world, since coming off that 3 yrs ago he went from having 5 a year to having 50 a year, we have maxed out the benefits of trileptal, klonipin and lamictal and have just started ONfi 1 1/2 weeks ago. I had taken him to boston childrens almost 2 yrs ago to discuss the vns and the epsilepsiologist there told me no way would he do it yet, as he felt at that time we had not ruled out enough meds. My son is also dev. delayed, has sensory perception issues and likely has an unidentified mitochondrial disorder underying all of this. His most recent EEG showed nearly constant spikes in his parital lobe.
Comments
Re: seeking VNS input
Submitted by jbmom on Mon, 2013-03-04 - 12:47
Thank you for the information, he has maxed out his trileptal, increased dose results in increased seizures and the lamictal results in increased behavioral issues. It is a tough decision on something so iffy.
Re: seeking VNS input
Submitted by wmgmather on Fri, 2013-03-01 - 16:04
I am in my 40's and just had a new VNS put in. The original one which was put in was very large. I have been on all different types of meds and nothing seems to work. I also have complex partial seizures and grew up with a learning disability. I am going back to some original meds that I have taken & seeing with my age if it works. It looks as though they haven't been working well. Sometimes I have about 2-4 a month sometimes less.
The battery life of the vns is about 7-8 years. I had my original in for close to 10 years which didn't help. It is an outpatient surgery.
When I was looking at surgery, my doctor sent be out to Houston for the testing. With the seizures occuring on both sides of my head, regular surgery wasn't a possibility. He told me that a VNS would be the best shot.
It seems to have worked sometimes but other times not as well. With some people it stops their seizures, others - it lowers the number of seizures, and others the seizures it doesn't help one bit. With the VNS you need to remember to have the magnet, whether wrist or clip-on, with you at all times.
The epiologist which you went to might think he's to young or hasn't seen the list of meds that your son has been on. Also, with the different medications he is on, the side effect of putting the meds together could interfer with one another.
If your son has the surgery, the doctor might want to keep him out of school for a couple of days. Every time you would go to your neurologist, they would check and see how the seizures are coming and increase the battery so that it's at a point which works for your son.
I hope this helps.
Rachel
I am in my 40's and just had a new VNS put in. The original one which was put in was very large. I have been on all different types of meds and nothing seems to work. I also have complex partial seizures and grew up with a learning disability. I am going back to some original meds that I have taken & seeing with my age if it works. It looks as though they haven't been working well. Sometimes I have about 2-4 a month sometimes less.
The battery life of the vns is about 7-8 years. I had my original in for close to 10 years which didn't help. It is an outpatient surgery.
When I was looking at surgery, my doctor sent be out to Houston for the testing. With the seizures occuring on both sides of my head, regular surgery wasn't a possibility. He told me that a VNS would be the best shot.
It seems to have worked sometimes but other times not as well. With some people it stops their seizures, others - it lowers the number of seizures, and others the seizures it doesn't help one bit. With the VNS you need to remember to have the magnet, whether wrist or clip-on, with you at all times.
The epiologist which you went to might think he's to young or hasn't seen the list of meds that your son has been on. Also, with the different medications he is on, the side effect of putting the meds together could interfer with one another.
If your son has the surgery, the doctor might want to keep him out of school for a couple of days. Every time you would go to your neurologist, they would check and see how the seizures are coming and increase the battery so that it's at a point which works for your son.
I hope this helps.
Rachel