Today I took Ben up to Dartmouth because Kayla had her rheumatology appointment. He always love to go when it's not HIS turn to be seen. So I got him cleaned, dressed and fed. Then we drove to pick up Kayla and as I'm pulling up to the curb to get her, she's giving me this weird look. "I KNOW!" I say as she hops in the car. It was making this really loud noise every time the tire on the right back side rotated. We drove to the shop to have them take a look. While we were waiting, I climbed in the back with Ben (he was on the vent today) to help him in case he needed to be suctioned. When I looked at him, I could tell something wasn't right. His whole body was tremoring, including his tongue. I have never seen this sort of activity before. It was a bit alarming. I took him off the vent for a minute to see if that would help. It didn't. I tried different things to see if I could break the cycle. Nothing worked. I called Dr. Filiano, his neurologist. He told me to give him his night dose of phenobarb. It took about 20 minutes for it to kick in and that finally kicked him out of the tremors. We continued on our way to the hospital and Ben ended up being seen by Dr. Filiano. He is always so good to fit us in as needed. He increased Ben's two seizure medications, we'll see if this works.
This picture is right before we were heading out the door. He wasn't too happy with me as you can see.
Not sure how well you'll be able to see the tremors in his tongue. I actually had a better video but deleted it by accident. The car was too dark to take a picture of his whole body tremors and they were so fine that I'm not sure the video would have picked them up. They were the type that you could feel more than see. It felt as if his whole body was midly vibrating.