WENT TO NEURO....

today we had our appt with dr T....it went well and it was just a follow up from the hospital visit on friday.....he just told me that VNS is looking REALLY GOOD right about now! we are almost maxed out on his ZONEGRAN, we ARE maxed on his TRILEPTAL so there is not much more room to go to with these particular drugs. we are talking about TOPOMAX but not sure. we have an appt on FRIDAY 9/8 to meet with J about the VNS....i think that is the route we are going and just PRAY that it helps my little man!!!!!

we also talked about my INVESTIGATION....how i have been tracking his HEARTRATE and it seems that a couple of days before OR a SLEEP before, if his HR goes into the 40's -50's, he will have a seizure the next time he falls asleep. he told me that WOW! THAT IS AN AUTONOMIC RESPONSE!!!!! i asked him if i should use that as our marking point and he said YEP! YOU DID IT! THAT SHOULD HELP YOU TO KNOW WHEN HE WILL HAVE ONE!!! wow! can you imagine how GREAT THAT IS? it would hopefully HELP US to know when another siezure MIGHT be coming! HEY IT IS SOMETHING!!!! :)