Friday, April 17, 2009


It's difficult for me to know where to go with this blog at this point. I first started it for two reasons. One being a way to keep in touch with family whenever something new was happening with Dustin. Each time we visited the hospital(and that was quite a bit for a while) we were having to call family and friends and explain everything. This wasn't really that taxing, but it was difficult to remember each detail and we wanted to pass along all the information we could. The other reason was prayer. When you have a tragedy or struggle in your life you often hear  the words "I'm praying for you". I think those are words people automatically use to comfort a person they have no other words for. I think those words were often being used as comfort for our family, but I think there were also many people praying. I wanted those people to have specific things to pray for. I thought this blog would be a good way to reach many people with our prayer requests and it's probably, as my mom has mentioned, a good therapy for myself. I feel we have had answered prayer each time we've reached out. Recently, we were told that Dustin's seizures were considered non-epileptic. This was difficult to hear because it meant many new questions but at the same time it was such an amazing gift for God. It meant no surgery and although the seizures may continue it meant that they weren't causing physical harm. While it would still be difficult to watch and still disrupt Dustin's 'normal' pattern of life, dealing with the seizures suddenly became a little more manageable. 
A week ago Thursday we met again with Dr.Katarawalla, Dustin's neurologist in Michigan City. This is a doctor whom we immediately liked when we first met with him and do continue to trust. He was also positive that after reviewing Dustin's first video EEG that he had epileptic activity causing his seizures. Reading his reports you wouldn't doubt his diagnosis at all. At this most recent meeting, he had spoken with the Dr's down at IU med center about Dustin's current video EEG results and their diagnosis of the seizures being non-epileptic. He is now in total agreement that the cause of these seizures isn't from misfiring electrical signals, but some kind of trauma or stress that his body is not able to deal with and is then manifesting itself in a physical form. 
When Dr.Katarawalla first spoke with us and told us that Dustin had epilepsy I never would have doubted him. He was absolute in everything he said. I don't know if he had made a mistake. I don't know if at IU Dustin really did have a different type of seizure and they could possibly be existing together. I do know that many many people were praying for Dustin. Praying that the seizures would stop and that he wouldn't need brain surgery. Praying for wisdom for the doctors. I feel like those prayers were answered. They might not have been answered in the obvious way we as humans would prefer, but they were answered. So, I want to thank each one you who prayed for Dustin, our family,  and his doctors. 
There still seem to be many unanswered questions and he did have a short seizure Thursday morning. He woke up feeling sick and had a seizure that lasted 3 minutes and then was post-ictal for about 10 minutes. That ,though, was the first seizure in over a week. They were happening almost every other day. He is slowly being weened off of all seizure medication. This has also been such an answer to prayer. One of his meds, Keppra, can cause violent and aggressive behavior. He was taking such a high dosage of it. Since he's decreased the amount he receives his aggression diminished greatly and he seems so much like the 'old' Dustin. It's still unclear what's happening with school and finding a psychiatrist seems to be the next hurdle my mom is trying to get over.  It seems, though, we've come through the most difficult struggles so far. No one seems scarred from anything. If anything I would hope we grew as a family. 

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