Hello!
Thank you so much for the kind words and info. Unfortunately my son's current neurologist has not offered anything else other than the meds he is on and the vns treatment. They are really pushing the vns which has me kinda concerned. They aren't offering any other options so as of right now, I am not happy with the care he has been receiving recently. He does take zonismide, gabapentin and lamotrigine er and has been averaging a gran mal about every 2 years which I thought was pretty good seizure control. They had even told me before that the last time they did a trough level bloodwork screen that his meds were in the therapeutic range but there was some wiggle room if we needed to go up on dosage. But they aren't offering that now. She said increasing his meds would likely not improve the breakthrough focal seizures.
I am thinking about getting a referral to a epileptologist for more treatment options. They never even mentioned anything about cbd/medical Marijuana. I am also looking at a diet change, possibly ketoginic or modified Atkins. I would do that of course with a doctor's help and approval. It would definitely be a challenge because most autistic people, not all, but most will only eat certain foods. My son is in that category and if he doesn't like it, he will just not eat. It is challenging to say the least but I know there has to be more options. VNS cant be the only thing that could possibly help him. I tried to talk with him about it and the procedure of what they would have to do with implanting the device and his anxiety went into overdrive. He emphatically said NO. The anxiety could cause more problems as that can be a seizure trigger so of course we want to help him with something less invasive if possible.
Prayers for you and all you are going through and thank you!
Sharon B