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Has anyone had VNS done for their child
Wed, 04/11/2007 - 18:13Topic: Surgery and Devices
My daughter Has LGS and her seizures have been very hard to control. When a med helps she eventually becomes immune to it. We've been through all meds. She is currently on Felbamate and the Keto Diet. VNS are our last hope. So our neurologist tells me.
Comments
Re: Re: Has anyone had VNS done for their child
Submitted by Abbygirl on Sat, 2007-04-21 - 09:06
Thank you so much for your response. We are meeting with a surgeon on Tues. to discuss the vns. I really hate the thoughts of more meds. Abby is on the keto diet right now. We tried to take her off because we didn't think it was working but her seizures got worse. It seems like everything has severe side effects but LGS is so severe that there is no other options but to risk the effects. I don't know any other parents with children that have LGS so I hope you keep in touch.
Re: Re: Re: Has anyone had VNS done for their child
Submitted by Jorge Lango on Sat, 2007-04-21 - 13:41
Hi, this is so difficultu to deal with, all LG patients apperantly respond very bad to all medication, so only minimal control can be achieved. My daugther doctor already told us that she is runnin out of medication options, so the next step is the hormonal therapy I was mentioning: i think the name of the hormone is ACTH, ask your doctor about this. I know there are more severe side effects than with medications, but is the steps to follow. Then, if the normonal therapy does not work, the VNS is kind of the last resource and is also agressive in side effects.
My daugther is still only on medications (5 different ones), she has seizures every day and we know options available and drastic/agresive and very few.
Wish you luck and lest keep in touch.
Jorge.
Re: Has anyone had VNS done for their child
Submitted by Jorge Lango on Wed, 2007-04-18 - 13:50
Hi Abby, my daugther was also diagnosed with LGS and had been also hard to control her seizures. She is on 5 different medications right now and seizures continues. Options we were told are: Horminal terapies (use of steriods) and the VNS. I know both are drastic in terms of side effects and do not control 100% of the seizures, probably only 50% reduction. We had to take our daugther to Mexico City because she run out of medication options here in the US (due FDA regulations). There are more medication options in Mexico but she is still not showing improve at all. There are more medication options in Europe before going into the Steriod terapy or the VNS, so we are really considering to move there to have access to a wide range of medications and better medical systems. Also Europe are far more advance in the steriod terapy and VNS. It is been so hard to deal with this, and everything is getting worse so fast with my daugther that we are running out of options. So I told my wife that we are moving wherever is neccesary to bring all the medical resources to my daugther. So, talk to your doctor about this steriod terapy. We did not agreed on the Ketogenic diet because we check some statistics that shows it really does not improve to much in the seizure contol and creates an unbalance in child metabolic activities plus the heavy side effects of the medicine. Good luck, Jorge.