Thursday, November 20, 2014

At Last, No More Phenobarbital!

Continuing from my post last month, Levi's issues were caused by cutting his back molars.  It's hard to comprehend that kind of consistent suffering could have such a simple cause, but Levi doesn't eat by mouth or chew on toys, so it takes him much longer to cut teeth.  On top of that, pain decreases the body's tolerance for seizures.  As soon as he started feeling better, he got an ear infection that the first antibiotic, amoxicillin, didn't touch it, so he's on a round of Ceftin instead.  It seems to be working well.

One week ago Levi took his last dose of phenobarbital.  He's been on this med since he was three weeks old.  The plan was to wean him off after a year, but that didn't happen.  He'll be four in a couple weeks.  Our neurologist warned us that the last step in weaning this drug is the hardest.  Basically, he is in withdrawal, even though we have weaned very slowly over the past year or more.  He is irritable and has a hard time sleeping.  He's been staying up until midnight or 1, and remaining awake the majority of the day.  It's sad, because we can see how tired he is, but he's just unable to stay asleep.  It's all worth it, though.  Phenobarb impairs learning, and each step down we have taken has brought more clarity and understanding to Levi.  We see him doing more.  He's actually able to hold his head up most of the time now, and can even sit alone on a chair or couch for a period of time before sliding over.  This drug also hinders the liver from absorbing other meds effectively.  The hope is that this has been the cause of his need for high doses of other meds, and that we can begin weaning others as they are better absorbed.

Please continue to pray for Levi.  We appreciate all your prayers and support!!

Levi ready to go to school.

Our grand babies Charlie, Roni, and Carson.

Levi sitting on his own in the doctor's office.

Daddy and Levi dressed up for Halloween.