The last couple of months have been wonderful for our family. We have seen a huge improvement in Ethan which has made everyday life a little better for all of us. In early November of 2012 we started weaning the keppra. It took 6 weeks but we slowly saw our child re-emerging. When the drug was completely out of his system he was talking and playing again. He even started putting several words together...to communicate what he wanted. It was amazing to watch. I distinctly remember hearing the word, "Christmas," come from the back seat as we were driving to church one evening. Bob and I looked at each other and smiled. I turned around and he was pointing at the Christmas lights. "Christmas!" he said again. A two syllable word!! Oh Praise the Lord! Also he has been trying things that his syblings are doing. We saw him try to slide across the kitchen floor on his socks like his sister. He has seen her do it many times, but usually he just laughs at her. All of sudden he was doing it too! So many things that we are thankful for.
So as we are experiencing this "new" child, we are also asking ourselves, "Why did we have him on this medication for nearly 2 years?" It was actually causing the drops, or at the least making them worse. So at this point we were also asking ourselves...what about the depakote. He is still have slight jerks, (seizures) but nothing like before. He is not slamming into the floor, or walls anymore. He is actually taking part in conversations, and laughing. So our thinking was why not wean the depakote too? The ketogenic diet is the only thing that we have seen progress with. He was on all of these medications before we ever started the diet, and at that point he was up to over 100 seizures a day. Did the meds work then? Well the doctors tell us that the medications are doing something and that it would be worse if he wasn't on them. Really? I am not so sure. What about the keppra? Now that he is off of it he is not grumpy, dazed or confused. He is not having nearly as many drop seizures. I think that every kid is different, and you can't use the generalized idea that epilepsy is best treated by medications. We tried that for nearly 2 years. So we decided to start weaning the depakote. We took him down just a tiny bit each week and saw him getting so much better. The drop seizures were less dramatic. We even saw what we think were a few seizure free days. He was so happy. I don't think we have seen him this happy and engaged in what was going on around him in since he was two. (Before the seizures started.)
So that brings me up to about a week and half ago. We all of a sudden saw the grand mal, (Tonic Clonic) seizures re-appear. He was doing so well. But he had 2 (Tonic Clonic siezures) in the same week. Still no drop seizures. We called the doctor to report them and they told us to put him back on the depakote. What??? Really??? We know from the last two years that anytime we increase that drug Ethan will literally loose it. He will fly into walls, doors, and floors. It is horrible. But the grand mals are scary too. So we added two pills back. (per the doctors orders) One in the evening and one in the morning. Now we are totally regretting it. His speech is so slurred. He is cranky, and drop seizures are back. They are hard and nasty. Just imagine a bowling ball being dropped. That is what it is like only the ball is his head. No warning, just nasty falls. I really hate these drugs. I really hate epilepsy.
We have a meeting with the Neurology team on Tuesday. Not sure what is going to happen. They believe in keeping him on these nasty drugs and I don't want to anymore. I would almost prefer the grand mal seizures to the drop seizures. At least he is happy, and coherent the rest of the week. Right now he is drugged and falling down constantly. His poor forehead is so big and black. It looks like it is about to burst open.
We need your prayers for the Neurology staff meeting on Tuesday. We need to make a change. But at this point it is all a guessing game. No one knows what the right decision is. Please pray for guidance from the Lord. Only He can direct us at this moment. Ethan needs to get better not worse. At this point we are on a downhill slope again....