Brextin is currently at St. Mary's with daddy having a 24 hour EEG performed - this was a scheduled routine EEG - however it has came at a time in which we are weaning him off of one of his major seizure drugs - vigabritran - we began to wean him off of the drug last Saturday and never saw one seizure until two days ago and now he is having over 9 seizures a day.
Since our neuro in out of the state we have to rely on the on-call doctor - and she has suggested we increase his generic Keppra to 3ml (currently he was taking only 1ml) so it is a significant increase - however we have to do what we can do to get seizure control. She has also suggested we continue with the 750mg of Vigabitran - and wait to decrease his amount until we have seizures under control.
While at St. Mary's they have asked to do a study on him - so they added three more electrodes onto his head - to monitor "vomiting" after a seizure. Often Brextin will vomit after having a seizure - however lately he hasn't.
I myself have been enjoying time alone for the evening - my sister has my oldest son for a sleep over - so I am currently sitting in my recliner with our weiner dog sitting right next to me - updating my son's blog on my laptop. Plus I just got done watching - All About Steve - and eating Peanut Butter and Chocolate Ben & Jerry's ice-cream. Life is good - now all I can ask for is for the meds to kick in and give my son - seizure control!
He's having seizures again! :( :( He was doing soooo good! I hope and pray everyday for Brex!ReplyDelete
I'm also happy you got some alone and relaxation time!
Tim had a 24 hour eeg a few years back. They called it an ambulatory eeg. He was all wired up and he did not like it one little bit. They had to papoose him to a board to attach the electrodes which was easier than us trying to hold him down for it. We ended up having to use arm boards that make it so he could not bend his arms to reach for the electrodes. It was not a fun day. I do not look forward to another one of those. I am hoping you will get some news from Brextin's test. I think of you guys so often. You are doing a great job for your son. Love, LoriReplyDelete