Anyone had VNS for under 10yro with refractory seizures both tonic clonic and asbences - thoughts on experience. Having discussions now for my daughter. Thanks
It is for drug resistan epilepsy (DRE) but it gives you control if you have auras and the automatic heart rate increase detect will boost it if heart rate gets high as with anxiety before seizure.
For children the Ketogenic diet has great success rate. Was designed for them! ( drop carbs- increase fats) but monitored by medical staff. I would ask doctors.
Thanks for responding Jeff and your thoughts. Yes she has been on the Ketogenic diet through the hospital for 9 months - whilst initially had an excellent result, she has now adapted and gone backwards. VNS has been raised as an option for us to consider and was hoping to hear others thoughts and perhaps experiences if undergone the procedure.
Thanks Jeff - yes down her in Australia - they do perform on children under 12 - albeit infrequent and is for those that are unfortunate to not be responsive to medications like my daughter
Caught me by surprise there. I thought it was approved for age 12 and up. I remember the video part "what is the VNS" that came with my information kit. Then I Googled around some and saw that Johns Hopkins University Med center can do even babies and call it research.