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mmas
@mmas

Posts: 13
Joined: Sep 13, 2016

Vagal stimulators

Posted by @mmas, Tue, Apr 3 12:12pm

Has anyone had any experience with vagal stimulators for seizure control for their children?

REPLY

Hi @mmas,

I'm tagging @jenkie @shanef86 @carnation @bellap @carhowell @hermsenk who have all shared their or their child's experience with vagus nerve stimulation VNS.

In the meantime, here is some information from Mayo Clinic on vagus nerve stimulation http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

@mmas, is the ketogenic diet helping your daughter?

@kanaazpereira

Hi @mmas,

I'm tagging @jenkie @shanef86 @carnation @bellap @carhowell @hermsenk who have all shared their or their child's experience with vagus nerve stimulation VNS.

In the meantime, here is some information from Mayo Clinic on vagus nerve stimulation http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

@mmas, is the ketogenic diet helping your daughter?

Jump to this post

I have heard much more negative things about VNS than good although only about adults. I had a friend who had one and although it didn’t totally control his seizures he felt it helped. He died while in Status Epilepticus. I was offered one but refused it and surgery too. VNS does come with potential side effects. Breathing problems, coughing, heart trouble, changes with your voice any quite a few others. I’d rather have an occasional seizure than a VNS any day. Good luck to your son and you.

@kanaazpereira

Hi @mmas,

I'm tagging @jenkie @shanef86 @carnation @bellap @carhowell @hermsenk who have all shared their or their child's experience with vagus nerve stimulation VNS.

In the meantime, here is some information from Mayo Clinic on vagus nerve stimulation http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

@mmas, is the ketogenic diet helping your daughter?

Jump to this post

We actually never started diet. Our neurologist is out of MA and we currently live in FL. It needs to be closely monitored so we decided to wait.

@kanaazpereira

Hi @mmas,

I'm tagging @jenkie @shanef86 @carnation @bellap @carhowell @hermsenk who have all shared their or their child's experience with vagus nerve stimulation VNS.

In the meantime, here is some information from Mayo Clinic on vagus nerve stimulation http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

@mmas, is the ketogenic diet helping your daughter?

Jump to this post

Thank you for your thoughts. From what heard it's obviously not 100% effective abc at this point I wouldn't want to put her through something like this if it's doesn't have more of a success rate.

They claim 50% reductions in seizures in 20-55% of patients. Bad odds in my opinion considering the side effects. I doubt I’d let my child have a VNS but children are so resilient they my do better than adults. Like to see some stats on that. Trouble swallowing, hoarseness, heart problems, facial weakness, voice alterations, although rare cardiac arrhythmia’s have occurred. Check out the VNS message Board.

HI @mmas; My son who was diagnosed with a seizure disorder at 5 and is now 13 has a VNS. He had it placed at Luries last December. Previous to the VNS we had tried the modified atkins diet, and several other medication. He has focal seizures in the occipital lobe, and had what his neurologist referred to as a "very active EEG." After the placement of the VNS his EEG went down to 11 seizures in a 24 hour period. Some of his seizures are electrographic only, meaning that they are detectable via EEG. What I like about the VNS is that I feel like it gives the MD direct access to interrupt the seizure signal and to stop the seizure before it starts. There are also more options to help control the seizures with dosing the VNS signal. What I don't like is that it hasn't 100% stopped the seizures for my son. He also takes 400 mg of Banzel 2X/day. I would like for him to be off of all medication ideally. It was a scary surgery for us as parents and for him as a patient, but I think we all would do it again. I think the VNS will be a part of the puzzle to help my son be seizure free eventually.

Thanks for this info!

@lmcquade
May I ask how many seizures your son had prior to his VNS and what medication/s he was on. How many seizures does he have now, actual seizures not electrographi? Also curious if he has had any side effects from the VNS?
Wishing your son complete control soon.
Jake

@jakedduck1

@lmcquade
May I ask how many seizures your son had prior to his VNS and what medication/s he was on. How many seizures does he have now, actual seizures not electrographi? Also curious if he has had any side effects from the VNS?
Wishing your son complete control soon.
Jake

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Its been hard to know how many seizures he had before the VNS, at the times that his seizure disorders are not well controlled he can have more than one seizure per day. Now, he has about 1 breakthrough seizure every other week. His last break through seizure was 11/13/18.

We have tried several medications: Trileptol, Lamictal (he had the beginning of the skin reaction and we immediately discontinued), Zonisamide (that was a doozy of a drug for him, I would consider twice before every using that one), vimpat, and Banzel. Banzel seams to work moderately well for him consistently over time.

We also take an ADHD drug for attention.

We also did the modified atkins as a diet modification- which we are going to implement again after the new year.

In terms of side effects of VNS he has tolerated it very well. He has had two incidences of hallucinations both immediately following one of the calibrations. I would go through the surgery again for the control we have gotten and also for the potential for more modifications to the dosing as he continues to grow.

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