Writing this post...to keep a record for myself.....
These past few months have passed and slowly Andrew has gone from being a eager, happy two meals a day plus snack eater, to barely eating anything at all. Andrew is 12 and people have been commenting that Andrew is on his growth spurt "spreading out" and looking good. I thought that was what was going on, until I weighed him a little over a week ago. Andrew has gone from a top weight of 104lbs to currently 79lbs. He is noticeably skinnier throughout his entire body. ( I preferred the "hefty" Drew.) This summer per our doctors orders we increased his one seizure med and very, very slowly weaned the another. After months and months, Andrew was off of the highly addictive Clobazam and on a max dose of 800mg Banzel 2 x day. He remained on Felbatol 4cc three times per day. Even back at the old house (April) we noticed Andrew not eating as well, but definitely as of September it is a struggle to get any food in him at all. It's gotten so bad, I am going into school to feed Andrew lunch so that he doesn't come home from school at 4:45pm without eating the entire day. A side effect of Banzel is loss of appetite, nausea, vomiting. Andrew is showing these side effects. We have talked with the doctor, and are now weaning the Banzel, adding a very small amount of Clobazam back in, and increasing the Felbatol to 5cc, 4cc, 5cc to compensate for the Banzel reduction. We hope that Banzel is the problem -( and that there are no other hidden medical problems we can't see!). We hope to see Andrew's appetite return. Also as we reduced the last Clobazam pill, a stronger seizure did present (lasting 60+ seconds, more tonic clonic shaking, and loud grunting), and also Andrew's muscles became tighter. (Clobazam is a muscle relaxer). Hopefully the Clobazam pill addition will take care of that stronger seizure, and loosen him up a bit. We will also supplement Andrew's food intake with Pediasure. Hoping this resolves soon.
.
