What we know so far...

I woke up Wednesday morning to an email from my mom. She couldn't call long distance from the hospital phone and her cell phone wasn't working. She wanted to tell us that Dustin had a seizure Tuesday at about 11pm. She said he had a cluster of three seizures. He started getting pale and smelled something funny. She said this seizure was similar to the one that she saw him have at school the day he lost his memory and both of these have appeared to be different for the others he has had. The doctor came in to tell her that during the entire video eeg including the time of the seizure there was no epileptic activity recorded. She believed Dustin was having a psuedoseizure. This is a real uncontrollable seizure that is not caused by misfires of electrical signals in the brain, but by the body not being able to handle some sort of stress or anxiety and having it manifested physically. She was shocked. We had originally been told that Dustin was having psuedoseizures, but his neurologist at home was sure after observing his eeg that there was epileptic activity.
My Dad, Jenna and I headed down as soon as we could so we could be there when the doctors came in. Unfortunately, we shouldn't have been in such a rush because we didn't see any doctors until 4 hours after we arrived. We took turns sitting in the two chairs in the room. Finally the two doctors making rounds came in. They explained that the team of doctors had reviewed the eeg and all agreed that there was no seizure activity and at any time. One of the doctors did talk to him and ask him some questions and seemed very concerned about his memory loss which resulted from the most recent seizure. He was back to not remembering anything again. He told the doctor he knew my mom was his mom, but didn't know her name or the rest of us. The doctor asked if he remembered anything else such as a big event that may have happened in the news recently. Dustin said 'the president'. He couldn't tell us anything about him but just remembered 'the president'. For anyone who knows Dustin this isn't that unusual since he is a big fan of President Obama and was very excited about this election. About a half an hour later his doctor came in to talk to us. He was very nice and concerned about Dustin. He told us with certainty that he didn't think that Dustin had epilepsy, but at the same time although these seizures aren't neurological they are not at all anything Dustin has control over. He wants him to start seeing the psychiatrist at their hospital who specializes in this and to discuss the memory loss. He told us that as we met with him during our first visit he didn't think that Dustin's seizures sounded like typical epileptic seizures nor did the memory loss sound typical of epilepsy. He wanted to start weening him off of his seizures meds since they wouldn't be helping control the seizures if they weren't neurological. We all agreed this was best especially since he was taking such a high dosage of Keppra which can cause anger and mood changes. During the time the doctor was there Dustin stayed quiet and didn't really have any questions. He still cannot drive, swim, control machinery, etc.
The doctors then released him to go home so we wouldn't have to come for him the next day. After Dustin had the seizure Tuesday night he asked my mom for paper so he could write something down. His handwriting was barely legible, but he wrote three friends from school's names down and some ineligible sentence. In the van on the way home, he asked to see the notebook he had wrote in. We gave it to him. After five minutes I turned around to see Dustin reading a paper and tears just streaming down his face. In the notebook was a pamphlet the doctors had given my mom explaining psuedoseizures. He looked at me and said, "Was I faking this?". It was heartbreaking. We explained to him that he was not at all faking. This was something that was completely out of his control, although it wasn't neurological it its still a medical problem. It was a long ride. He had a lot of questions about his life. We felt like we were starting back at where we had on March 1st.
When we got home Dustin wasn't tired, but the rest of us were exhausted. Especially my mom who had slept in a reclining chair with beeps and noises interrupting her all night just as she would doze off. Dustin came and asked me about his life. I showed him this blog and told him he could take his time reading through, but it would explain a lot of what had happened. He also wanted to look at pictures. I got out his memory box and some photo albums. We looked through photos of vacations, preschool, birthday parties, little league and sixth grade graduation. He looked at each one, but wouldn't touch them. The entire time tears streamed down his face. I can't imagine what it would be like to look at a picture of you at your sixth birthday and have no recollection of your cake or what present you were happy to get that year. He did ask if he could keep the box to look at.
He still wanted to talk. My mom had to go to sleep, she was exhausted. Dad and I talked to him for a while, but I finally had to go to bed. It was emotional. He wanted to know if he had been a bad person, if he would have to go to school how people would understand this is caused by stress and anxiety when he himself didn't understand it. I woke up not too long later to my Dad's voice. He was telling me that he thought Dustin was having another seizure. I couldn't wake up. I remember telling him to give him his sedative. In the morning I found out that they were praying together and afterwards Dustin said he was going to get sick. Dad said he got very pale and lost consciousness. He didn't convulse, but when he came to he said he had lost feeling in his left arm and he couldn't talk. He tried to write, but couldn't. He finally resorted to making letter shapes with his and my mom's hands. My dad said that he seemed to be trying to sign and that is why he tried to wake me up last night. Finally sometime after 2am they were all able to go to sleep.
Today my mom wasn't able to talk to his neurologist, but she didn't speak with his nurse. The nurse assured her that the doctor knows he saw epileptic activity without a doubt in his eeg. He wouldn't have sent him to IU for an evaluation without being sure of this. He told us that the two seizures can coexist together. We did ask about this at IU, but the were sure that this was not the case. Dr. Katarawalla agreed that he should be taken off of his medicine and wants to review the other neurologists notes and eeg. Dustin has an appointment with him next week. Mom also contacted the psychologist that he had been seeing. He also believes that it is more likely that the two types of seizures are coexisting. He said that this will allow him to treat him differently now though since we know that no matter what Dustin is dealing with huge amounts of anxiety and understandably so.
So we did get some answers. Yesterday we were just happy that he wouldn't have to have brain surgery that could possibly have permanent side-effects. It was also confusing to be told something completely different and try to grasp exactly what it means for the seizures to not be neurological. Today we also find that his neurologist here still feels sure he is epileptic.
It's confusing.
For us, for the doctors and for Dustin.
Pray for clarity for all of us in this. Pray that we just continue to trust God. He has a will and a plan for Dustin and our family and it is for good no matter what the outcome is. Pray for Dustin. He is in constant fear of what is happening to him. He has had some memories return today which is awesome, but he also fears that this could happen again.
If you're still reading...thank you...this was long!