Grant continued to have severe seizures, and we were at our wits end with this.  We were introduced to a special diet called the Ketogenic Diet that could possible decrease the seizures.  We contacted the nutritionist at Children’s where she gave us the information to start the diet. It was a week stay in the hospital where he would have to fast for 48 hours, and introduce his body to this disgusting high fat, no sugar diet that was suppose to decrease seizures in some children.

This diet did not work for Grant.  He threw up constantly on it from the fat and the milk products, because I didn’t realize he was allergic to milk.  So for two years he was on this diet, and continued to throw up.  The constant vomiting caused him to develop a stomach ulcer, and to see a Gastroenterologist who put him on an acid reflux medicine.  Finally, the Neurologist at Children’s Hospital saw him and said we need to take him off of this diet, if it is causing him to throw up this much.  The next day I started the weaning process to take him off of the diet.  Oh, by the way, The Ketogenic diet did NOT decrease his seizures. One thing is for sure, is that I can say we tried it.

Grant started eating regular foods that were pureed, which he loved.  He was so happy he could eat regular food.  He was a much happier kid.  I decided to experiment with his diet, and not give him processed sugar, no potatoes, no starch, only meats and vegetables  applesauce, juice and soy milk. (Grant would not drink water).  I noticed that keeping him from the starches and sugars had decreased his seizures.  So I kept doing this for a while.  I also started giving him gluten free foods such as oatmeal, pancakes, etc.

We then met with his Neurologist at Children’s where he told us of a new experimental drug called Clobazam.  He asked us if we were interested in doing this, and if so, to contact this particular Neurologist in DC.  This “doctor” happened to be the doctor who gave Grant his initial diagnosis that tragic day we brought him into the hospital for the first round of seizures when he was 8 weeks old. She informed us of the experimental drug and how we could qualify for it.  We did, and Grant did qualify. There were lots of tests to qualify for this drug and one was having his heart checked.  By accident, the doctors found that Grant had a Dilated Aorta, and he continues to see a Cardiologist.

In conjunction with his diet, this experimental anti-seizure drug decreased Grant’s seizures by 90%.  Grant continues using this experimental drug along with other anti-seizure drugs and continues to eat a gluten free, very low starch diet and his seizures still remain 90% less.  He is a happy little 8 year old boy with a great disposition, and will melt anyone’s heart when they see him.

Pages: 1 2 3