Roulette

I feel like we are playing roulette with the medicines we are hoping will stop Hayden's seizures. We keep trying one after another hoping one of them will eventually work. We began with Keppra, moved onto Topamax when the Keppra didn't work. Next, we added 15mg/day of Prednisolone to the Topamax. Still, no improvement. Then, we bagan 40mg/day of Prednisolone and discontinued the Topamax. Yesterday, he had an office visit with his neurologist, an EEG, and labs drawn. The steroid has increased his blood pressure to 123/52, which is too high. His labs are okay, but his EEG is either the same or a little worse. He has his worst cluster of seizures yet just prior to his EEG and another cluster after the EEG so the results may have been skewed. We haven't noticed any postive changes at home. This makes it unlikely that anything has really changed. Dr. Palat discussed the possiblity of using blood pressure meds while finishing the 2 week course of steroids. If his blood pressure reamains over 110/65, if his labs or seizures get worse, or if Hayden starts acting differently, we are to begin to wean him from the Prednisolone and then and decide what to do from there. Most likely, he will go on the Ketogenic diet. A diet high in fat and low in carbs and no sugar is allowed (not in medicines, toothpaste, etc.)!! This is a very strict diet that has been successful in controling some seizures. Of course, there is no dietician in Des Moines that can administer the diet that usually needs to begin in the hospital since you have to begin it by fasting and it can really mess with blood sugars. The clinic that Hayden goes to for his Cerebral Palsy has an epilepsy clinic that can administer the diet, so we may end up starting our spring out in Minnesota. More on that if we end up needing to take that step. For right now, we are continuing with the steroids for one more week. Next Thursday, he has a repeat EEG and blood work. We should know what the next step is next Friday.