In August we saw his neurologist here in Maine and also the Ketogenic Clinic in Boston. My goal for Dakota was to get him off as many meds as we could without harming him. Most of his seizures are very quick only lasting maybe 15-20 seconds, of course we worry what those 20 seconds are doing to his brain but the positives outweigh the negative. We discussed with both doctors 3 different routes. There is the VNS which has always been in the back of our heads. We personally know people that have the VNS and it has done wonders for them but we still aren't set on it. We were referred to the surgeon that would do the surgery just incase we decided to go that route. The second route of course is to try different antiepileptic medicine, which of course if we had to we would. The third isn't truly an option quiet yet as it hasn't been approved by the FDA. Again these are all just options for us and when the time comes we would do whatever was in the best interest of Dakota. We've been told that because of Dakota's uncontrollable epilepsy he is at risk for SUDEP (Sudden Unexpected Death in Epilepsy). Our hearts sank when we heard these words come from the doctors mouth.
As I said Dakota is also on the Ketogenic Diet which has helped in some ways. Dakota had is normal blood and urine draws in August and we found out that he was at risk for kidney stones which can happen with the diet. So we couldn't go to much higher with the ratio. We hope he gets better results this month so we can increase and see if his seizure count will go down.
In September his count went down to 250 for the month. He had started back at school as a kindergartener which meant full days. School saw a huge difference in him and was so happy to see him more alert and engaged. Some of his seizures were strong but when he came out of them he would go right back to playing/working. We felt pretty comfortable with where we were at. I had put a call into his neurologist for more refills on his last medicine. When they called back I wasn't expecting what they were about to tell me. We had the go ahead to wean off the medicine(Onfi)!!! So the following week we started the wean. He has done ok not as great as we had hoped but we are still going through with it. Some of his seizures are getting stronger but he's still having the small 15-20 second ones as well. Besides the strength he hasn't had an increase in amount which is great. His total for October was 251. We met with the Keto clinic last week and even though they don't like the numbers they feel that if the seizures aren't taken away from his day then that's ok. They are hoping to increase his ratio once they get his lab results and hopefully that will help decrease the numbers. Dakota also has to have an ultrasound done on his kidneys just to make sure everything his going ok.
I wonder often if we are doing the right thing. Even more so on days that he has bad ones. To see his face go from happy to panic/scared in a matter of seconds is the worst.
Every year his seizure count goes up. He was 9 months old when he had his first seizure. The following 3 years we didn't keep track as well as we do know. He would have a week or two where he would be seizure free. In 2011 we started to log every seizure he had even if it was questionable. ( I honestly don't know why we didn't do it before then) So here are the yearly counts up to today 2011- 139, 2012-218, 2013 so far- 1484.
As of today Dakota is no longer on any seizure medicines. His last dose of Onfi was Saturday night and although we have seen a slight increase in strength we are going to give this about week to really see how he does without any thing in his body besides the Ketogenic diet. I hope to update you all next week with how this is going so keep an eye open.