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Posts (5)

Nov 27, 2018 · Vagal stimulators for controlling children's seizures? in About Kids & Teens

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.

Nov 27, 2018 · Risk of passing epilepsy to children in Epilepsy & Seizures

Hi- I haven't looked into any heritability of the disease information. Im sorry I cant provide any information about that. The only thing I would think that I may try, if I was worried about my children being at risk, would be to do a diet modification as a preventative measure. She may want to follow up with her neurologist/epileptologist and see what their thoughts would be about that option for her children.

Nov 13, 2018 · magnesium levels and epilepsy? in Epilepsy & Seizures

Hi @lisalucier We tried the modified atkins for about 9 months. I would say the first 3 months we saw a dramatic decrease in break through seizures and in general while my son was on the modified atkins he was "clearer" if that makes sense. We eventually ended up discontinuing the diet because it was so restrictive and hard to maintain as I work full time and my son was 10/11 at the time. We are investigating trying Keto again in addition to his VNS. I feel that with seizure disorders there are so many opportunities for trial and error until you find a mix that works to control seizure activity. My son has experienced moderate level of success with the modified atkins and the VNS. Banzel is a staple for him as well. I am hopeful that now with the VNS if we go back to the diet we will be able to wean off of the medication. That's always my goal for him, to have seizure control without medication.

Nov 13, 2018 · magnesium levels and epilepsy? in Epilepsy & Seizures

My son’s seizure disorder is minimally responsive to medication. He currently is on Banzel and has a VNS. Has anyone used magnesium as a supplement to medication to help control seizures? We have tried modified Atkins. Are there any other wholistic strategies/supplements that you all have found to be effective in treating a intractable seizure disorder?

Nov 12, 2018 · Vagal stimulators for controlling children's seizures? in About Kids & Teens

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.