I guess it's time for an update. We really don't have too much more news. Dustin still doesn't remember most big events or people before March. He does remember things like sports trivia and other odd little things. I'm not sure, but it could be that he may not remember these right away but more that they are easily relearned? I'm not actually a doctor so that is just a guess. He has had three seizures since my last post. One happened before school. My mom walked into his room around 7am to wake him up and found him lying face down on his floor. We turned him over and found him unresponsive. His body was limp and his pupils didn't react to the light. Finding him like that is difficult because you feel like there is nothing you can do since we don't need to bring him to the hospital and strangely comforting because you know you don't have to bring him to the hospital. There is a feeling of helplessness, but there isn't the panic that was felt before. My mom stayed with him until he woke up. He did wake before 7:30 and said he woke up around 6 and felt like he was going to have a seizure. His head hurt like someone had hit him with something. He then must have started seizing and at some point became postictal. He had one two weeks later in the morning before school as well. Last night he woke up around 1am and his body felt tingly all over and he couldn't move at all. He lay there till he fell back asleep and then woke up later and was able to get his phone, but couldn't move enough to call anyone. He fell back asleep and woke once more but couldn't find the phone. He then woke up this morning with a headache. He has been having horrible migraines lately that cause him to vomit from the pain and have also caused him to miss a lot of school. It seems that even if he is able to go in the morning he usually has to leave early. We did come up with a plan at school, but I think it's going to still have to be altered. He isn't able to go to school and needs to do something or he won't be graduating on time. It's difficult to want to still challenge him academically and yet not overwhelm him when he is dealing with everything else. Since weening him off of the Keppra his personality is so much better. That is such an awesome answer to prayer and has released so much tension in our house. My mom is still struggling to get him into Rush. Trying to get different doctors offices to file paperwork and insurance to respond is not an easy task. I know that she misses being at work and the kids she worked with, but taking care of Dustin the past couple of months has been a full time job(she has become addicted to House and I think wishes he were real and would diagnose Dustin). Although I'm sure she misses her check I'm thankful that God has kept Dad busy with steady work especially while the economy is in the state it's in. I will admit that it's hard to not become frustrated with doctors, school issues, and just not having answers. We want to get him the help he needs but it depends on so many things out of our control. It's also difficult to fully accept that these are non-epileptic seizures. So many of his symptoms could be both epileptic and non-epileptic. We don't want him to 'have something' wrong, but also don't want something to go undiagnosed.
It's hard to still ask for prayer. I feel selfish. While we are still struggling there are so many people out there going through worse. We are thankful. Dustin is still with us. His mood is 100 times better and that makes everything easier to deal with. We really have had good experiences with doctors so far and I everyone has been so supportive and the prayers that have been offered up have made such a difference.
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