Saturday, April 14, 2012

Another ER Visit, Ketogenic Diet Decision

Thursday night for about an hour and a half during dinner time, Levi was having back to back seizures.  We were just about to either call the neurologist or take him to the ER when they stopped.  He was really tired afterwards, but acting normal.  At 4:00 the next morning he woke me up with more nonstop seizing.  We called Cardinal Glennon and then took him in to the ER.  We figured they would give him a rescue med, which he has never before needed.  By the time we got there the seizures were occurring normally again.  We spoke to a new neurologist about possibly starting Depakote in the future, and received a prescription for diazepam, a seizure rescue med, in case he had that problem again.  By this point we were definitely certain that we wanted to start the Ketogenic diet -- the sooner the better!  One of the neurology nurses came to visit us while we were still in the ER to speak with us about the diet and give us a questionnaire to fill out regarding Levi's current eating habits and what types of food he likes.  We let her know we have made the decision to go ahead with the diet, and filled the paperwork out before we went home.

At this point, this is where I stand.  I'm tired of trying medications that work so well for some kids but either do nothing or cause more seizures for Levi.  I'm tired of watching him go through seizure after seizure and be able to do nothing but try to comfort him.  I'm tired of counting seizures and dreaming of the day when they will STOP.

It's my belief that drug therapy has been tried, and has failed, so it's time to go on to other methods of epilepsy control.  The Ketogenic diet is our first choice.  It's a high fat, low carb diet that forces the body to burn fat instead of sugars. No one really know why this works, but it does, in about 2/3 of the children who try it.  You can ready more about it at or  We are looking to begin the diet in mid may.  It requires a hospital stay of at least 3 days to get him acclimated and bring his body into a state of ketosis.  In the meantime I would like to wean Clobazam (Onfi) all the way off and not begin any new meds.  We have a neurology appointment on the 18th of this month and I'll see what they think of my plan. LOL

On to brighter things, even though Levi has been having many extra seizures, and sometimes strange jerking movements, he has been very alert and happy!  He smiles a lot, and holds his head better than he ever has.  When he sleeps he has been curling into a little ball, it's so cute!  He wants to stand a lot, and his entire body seems so much stronger!  I stand him on the floor between my legs while I'm sitting on the couch and only have to watch his head a little.  It's truly amazing to watch him begin to wake up!  Hopefully this diet will be the miracle we need.  It really is the only thing out there that has actually cured epilepsy for some people.  Prayers are always very much appreciated!  


  1. Praying for the diet to be the miracle for little Levi. He has been through SO much! And so have Mom and Dad! Love you guys! Sue and Gene Seibel

  2. Thanks so much for your prayer and support! We love you too!