On a combo of Depakote and Topamax- Cade remained seizure free for 21 months. A true miracle honestly. We had been told by his neurologist at the beginning that he would likely eventually require surgery as she anticipated his case being very difficult. He did well for over a year. Through bloodwork taken frequently to check his liver and kidneys they determined that his platelets had dropped from the depakote dose and his bicarbonate level was low due to the Topamax. So we decreased his doses. Despite the decrease in doses he remained seizures free.
In February of 2012- at the breakfast table, I noticed unusual behavior and it turned out to be a seizure. The neurologist immediately increased his depakote and topamax doses- assuming it was a growth spurt and the meds just needed to catch up. Unfortunately, that wasn't the case. Since February Cade has had anywhere from 1-5 seizures each day. We have increased medications which have led to additional side effects (low platelets and bicarb); we've added additional medications each of which have increased irritability and exhaustion so much so that we've had to part-day homeschool Cade with his ABA (Applied Behavioral Therpaist), so that he can take a nap before attending school for two hours. We've even altered his diet: gluten free and minimal dairy. We've done all that we can think of to try to stop the seizures with little luck.
And so, he is scheduled to have the part of his frontal lobe removed that is the focus of his seizures on Tuesday February 12, 2013. We are anxious, excited, terrified and apprehensive all at the same time. We are thankful for the support, the encouragement and most of all the prayers we have and continue to receive. We know that God hears our prayers. We were told in our meeting with the surgeons last Thursday that Cade requires just a one step procedure with significantly less risk then we were initially told! This is amazing news!!
We are grateful for your concern for Cade and I will do my best to update everybody over the next two months!