Next Up...

Dustin has been having about one seizure a week on average. He was able to stay at school last week after he had one. Playing football is a big motivator for him. Today he did have one at school and he came home and was still sleeping when I talked to my mom around seven. He didn't make it down to the nurses office, but the seizure took place in the hallway. Unfortunately, this means that the other students have to stay in their classrooms until he 'wakes up'. After he seizes and is in a postictal state he is like dead weight. According to his football roster he weighs 260lbs, but I think that's slightly incorrect. Ha...we'd really be in trouble then. Although, at around 220 lbs he's still difficult to move. We have met with the school to consider writing an IEP for him under other health impairment. Hopefully, this would allow him to continue to keep up with school even if he has a seizure during the week. Missing even one day every two weeks really can add up. I know that he's getting frustrated. He constantly has a severe headache. He told my mom today that he's got to get better soon. He can't keep feeling like this.

We go back to Rush on the 22nd to meet with his new doctor again. Hopefully he will have some other ideas for treatment. I think Dustin is just sick of the constant head aches and the interruptions epilepsy can bring to everyday life.

In my previous post I had written about the site...Talkaboutit.org. I'm assuming that not many people actually went there since neither my mom nor my sister, Heidi, noticed that entire paragraph at the end of my well written blog. So, anyway, if you do take a minute to log on to there and click on the parent section you will see Greg Grunberg interviewing Dustin's new doctor from Rush, Michael Smith, MD. It's also interesting to note that both Dr. Smith and Greg Grunberg have sons with epilepsy. It's a pretty cool site...oh, and Greg Grunberg has been on or in Lost, one of the Austin Powers movies, Felicity, Hallow Man and the Pallbearer.

I'll try and update after our appointment on Tuesday. Also, if you're praying...keep my mom in your prayers. She has cirrohsis of the liver and is in liver failure and her doctors aren't sure why. She has a biopsy on Friday. What her doctor thinks is happening is that she might have autoimmune hepititas which can cause her immune system to attack her liver. If this is what is causing he liver failure then it would be very treatable and she would begin to feel better in a couple of weeks. Hope you don't mind me putting that out there for the everyone to read on the WORLD WIDE web, Mom...but we love you!

Talk About It...

It's been a while. I know. I get reminded every time someone asks me how my brother is doing and I say "Oh, yeah, I need to update his blog.". I believe that the last time I posted we were waiting to his appointment at Rush in Chicago and had last been to IU Med Center. At IU they diagnosed him with psuedoseizures. We questioned the doctor about this for several reasons. The entire family felt that the doctors were looking not to find out what was wrong but instead to prove that he didn't have Epilepsy. We also didn't want him to have a serious medical condition, but were afraid that in trying to prove he had psuedoseizures that might possibly be overlooking other issues. I know my mom was very afraid of this. We asked his doctors if it was possible that he was experiencing both seizures. In some of the literature they gave it said that 30% of people with Epilepsy experience both types of seizures. We left IU without feeling comfortable with their diagnosis. They really stressed that the psuedoseizures usually cease after a diagnosis is given and Dustin's doctor also reminded him at each visit that he couldn't drive if he was still having the seizures. I think he thought that by reminding him of this it might stop the seizures. The seizures didn't stop. He was having one every week to 2 weeks. He and my mom did start to pick up on a pattern. He constantly seems to have a headache, but before each seizure it would be between an 8-10 on a pain scale with 10 being the worse. My mom also came to believe that he was having seizures at night while he was sleeping. There would be days where he would sleep late and wake up feeling awful and just 'off'. He would look and feel terrible and feel unrested.

Finally, his appointment at Rush came. We felt we had waited forever. It was the last week of July. We first met with a nurse practitioner. She sat with us for almost an hour as we went through each seizure and experience and described everything in detail. She listened intently and we instantly felt as though she was truly concerned with Dustin's case. The neurologist came in and we again felt as though he was really listening to everything we said. It was so comforting after our experience at IU. This Doctor does believe that Dustin has epilepsy but is also having psuedoseizures. He he came to this decision after reading the report from his video EEGs, and listening to my mom and I describe his seizures and to Dustin describe how he feels during and after the seizures.

He put Dustin back on Depakote(which we did try before, but now it is at a much higher dose). When he was previously on Depakote he felt his best . It is also used to treat headaches so hopefully it will help with his constant headache pain. He has to have his liver enzymes checked regularly since he is on such a high dosage and so the doctor can make sure that the levels of meds are where they should be. So far, he has still been experiencing the seizures. Some may have been psuedosiezures, but others we are pretty sure are epileptic. We go back to Rush on the 26th and will discuss if he will keep the meds the same or take a different route for treatment.

If you are wondering what to pray for I guess it would be that the meds do control the seizures and for guidance and wisdom for the doctor. Also for discernment for my mom and the rest of the family. It can be difficult to determine what type of seizure he is experiencing and how we an help him in school and in just being a normal teenager. Keep Dustin in your prayers as well. It can be scary for him. I know he had a seizure at football practice and woke up afterwards to one coach rubbing his chest over his heart and the other standing there with a defribillator! That could have been scary. It can be scary to see him experience a seizure and especially to not know what to do in the time immediately after the seizure when he is unconscious. Having seizures will be part of his life it seems and because of this it's easier to simply educate ourselves and others about why it happens and what to do. It may impact some of his activities, but I think he's doing a great job of not letting it define who he is and what he does.

Heidi did find Dustin a dog...Jersey. She is a very sweet dog and actually came and got my mom one night when Dustin had a seizure after she had gone to bed. That is exactly what we were hoping she would be able to do. She isn't trained to detect seizures, but our hopes were that as she got to know Dustin she would be able to detect the seizures or get help when he had one. So far she has done a great job! Dustin loves her and I think she misses him since he's been so busy with school and football.

I found this site TalkAboutIt.org. It's really interesting if you have a few minutes. It was created by Greg Grunberg(from Heroes). His 13 year old son has epilepsy.

Thanks again for your prayers and support and just for caring! I'll try to update a little sooner next time we go to the doctor!

5/12/09

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. 

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. 

Found

Jackson was found today...thank you for your prayers and thoughts! He is safe and with his family now.

Not about Dustin...

I thank you all for your prayers and thoughts for Dustin and my family so far. Since I have access to this blog and it is read by several people and people who are willing to pray to find answers I have another request for you. 
My cousin, Jackson is missing. Here is his information:

Jackson Seering
Last Seen: April 2, 09 @ 7:50pm in South Bend, In
Gender: M D.O.B.
:Feb 12, 93
Hair:Brown Height:5'8" Weight:140lbs
Eyes:Blue Race:White
Last seen on a bicycle wearing purple skinny jeans black T, Black High tops
Please Contact: South Bend Police@​574-​235-​9201 w/ANY info
Thank you for all your help!

Please, pray for his safety while his is away from his family, a safe return, comfort for his family, mother and brother, wisdom and guidance in their search and cooperation with the police...

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!

April 1, 2009

Dustin is home and tired. He did lose his memory again from this seizure and the doctors had some answers for us, but also more questions. I'm working on a post to try to explain what we found out, but probably won't get it up until tomorrow. Thank you for all your prayers and thoughts throughout this week!

And I pray that Christ will be more and more at home in your hearts as you trust in him. May your roots go down deep into the soil of God's marvelous love. And may you have the power to understand, as all God's people should, how wide, how long, how high and how deep his love really is. May you experience the love of Christ, though it is so great you will never fully understand it. Then you will be filled with the fullness of life and power that comes from God. 

Ephesians 3:17-19

3/31/09

Still no seizure. I'm pretty sure that today they took him off of his medication. In trying to induce a seizure they had him hypervilate and flashed lights at him. My mom said this did cause changes on his eeg, but no seizure. It did make him very mad though and he didn't want to discuss it over the phone with me and any jokes I made about it were met with silence. I did ask him what he did today and he said took a jog but I'm pretty sure he didn't move from his bed unless to pee. He probably also played an obscene amount of video games.  I'm not sure what to pray for at this point. I don't know what happens if he doesn't have a seizure and what happens if he does. I would just ask that you continue to pray for mom and Dustin as they spend a crazy amount of time in one small room together. Pray for wisdom for the doctors as we rely on them but continue to trust God.

March 30, 2009

Dustin is checked into the hospital and hooked up to the oxygen and heart monitor, but not the eeg yet. He is currently watching ESPN and eating his second breakfast. One of his doctors just came in to get a quick history and tell us what will be happening. Today they will get him hooked up to the video monitors and keep him on his medicine. They will record today and see if they can see any activity while on his meds and the slowly ween him off if they don't see any. She said there are things they can do to bring on the seizure such as blinking lights, noise and sleep deprivation. Luckily, the Internet is working...that was something he was worried about. Dustin did just tell my mom that he would rather the doctor diagnose him than my mom, haha. He can't access myspace, but you can send him cards and emails through the hospital. You can also email him at dustinswanson55@yahoo.com. I'll keep everyone updated as we find things out! Right now everyone is in a good mood, please, pray that continues for as long as possible!

Heading down to Indianapolis

I should have updated earlier, but I think most people know that Dustin will be at IU med center tomorrow. We're driving down tonight because he has to be there at 8 am which is 7 am our time. We were going to go down in the morning, but that would mean getting up at 3:30 and since I'm driving and am slightly prone to falling asleep no matter where I am I thought that going down the night before would be a better idea. They are admitting him for five days to do a video eeg. This will be the second one being done because the first was lost. Luckily we still have the doctors dictation notes from the previous one. It does kind of suck that the first was lost, but we just have to trust that it was lost for a reason. God is in control of this situation and I really don't think that he makes mistakes. I know that Dustin is not at all looking forward to doing this. He just found out last night that he will have to have an iv in and have all the electrodes stuck to his head. It will be boring and it's quite possible that he and my mom will drive each other crazy. In the long run, though, it could be worse. This isn't intrusive or painful. My dad has a job to finish up hopefully by Wednesday and then he is hoping to be able to go down too. When they did the video eeg in Michigan City it was easy to get food brought up or to switch who would stay with him. Being in Indianapolis this is going to be more difficult. The staff seems very accommodating, though. They told my mom they will watch him if she wants to run across the street to McDonalds or Starbucks and that she can order extra food for Dustin so she can eat while she's there too! He has to be watched 24/7 because the seizure could come on at any time and when this happens there is a button that the person watching him must push to mark the onset of the seizure. He's bringing a dvd player, play station, and laptop so hopefully this will keep him somewhat entertained. 

There are questions we all have for the doctor. The foremost being what if he doesn't have a seizure within the five days he is scheduled to be there. While he is there they will take him off his medicine and then just wait for him to have a seizure they can record. I know last time the hardest part for my mom was not being able to give him medicine to stop the seizure. The doctor wanted to see what was happening so they didn't want to stop it. It makes sense, but it was hard to watch. The previous seizure recorded lasted 55 minutes and that was with medicine, finally, to stop it. 
Please, pray for our safety in traveling, my mom and Dustin and their time spent together, wisdom and guidance for the doctors, for the seizure to happen quickly or at all if God's will, also that the staff will keep us informed with what is going on. 

Thank you everyone, again, for you continued prayers and support. It really means so much and helps so much. After those first few blog posts where we were reaching out for prayer we could see such a change right away. I've found that as time goes on it's easier to accept this as our 'new normal' and everyday lives. As we do this I find myself turning less and less to God and just taking things on myself. I know that's not how God wants us do handle our struggles and even our everyday life. So I also ask that you keep praying that we not try to handle any little thing on our own, but turn everything over to God. Pray that we just trust him and his plan for us. 

03/20/09

Thursday at school Dustin had another grand mal seizure. He only remembers falling asleep in English class. What really happened though...he didn' t fall asleep in English Class. His teacher did say that at the end of class he looked a little 'dazed' and out of it. He then made it to his fourth hour class and asked the teacher if he could go to the nurse. She said he definitely looked like he needed to go to the nurse. He had a friend walk him down. He only made it to the end of the hall and slumped against the lockers and the other kid ran to get the nurse. The nurse now has the ativan which she was able to give him right away and this was enough to get him out of it. My mom came and called the neurologist from Michigan City while she was at the school. He told her to take him home and let him sleep it off and he also added that his video eeg (which IUPUI is waiting on to decide what they are going to do) was lost at St. Anthony's. The good news is that with the ativan Dustin was still able to function the rest of the day and never even needed to go to sleep. He went back to school today. The bad news would be the lost video eeg. The president of the hospital called my mom and assured her that they are still looking for this and it is the first time they have lost one of these. Apparently, the test was filed incorrectly and then deleted. She was assured that they will continue to look for it and they will do another one free of charge. Dustin is not happy about this. It involves being hooked up to a million little probes on his head and being video taped in bed until he has a seizure. Last time he had one within 36 hours, but if necessary they would keep him up to 6 days! It's not fun, of course, Dustin doesn't really remember the first one so you 'd think it would be okay to do it again. He doesn't think that's funny. He looked up a lawyers number and talked to the business law class today at school to see if he had a case! When we were at IUPUI the doctors weren't sure that they weren't going to have to do another video eeg anyway, so doing another one there won't be the end of the world. I went with my mom to his parent teacher conferences. Most of his teachers have noticed a definite change in him. They said he is much more quiet and subdued. His art teacher asked him to paint a mural on the wall by one of the drinking fountains. She assured my mom the she wants him to do this even if it doesn't get done till his senior year. He hasn't tried to draw anything in his art class, but he is trying to come up with ideas to paint. This is awesome when compared to a week ago when he took all of his art work out of his room and told us he didn't want it in his life anymore. It must be scary to him, but little steps like these are a blessing for us to see. His teachers were all so supportive and he seems to be well liked at school! Lately his sense of humor seems to be the same too...last night he had us all cracking up!

Please pray for:

Dustin's memory to return as God wills it to

patience and acceptance for all of us as we adjust to each day that brings something else in to our lives

That the medicine he is taking continue to work and if he does have another seizure that they be as short and the effects as mild as the last one

God's hand be over the search for the missing eeg

Wisdom for Dustin's doctors and my parents in the decisions they have to make

Guidance for Dustin at school because he has missed so much and no one is really sure what we should do as far as reteaching and trying to get him back into his classwork

patience and peace for Dustin as he goes through each day with his friends, school, and overwhelming but loving family!

IU Med Center

Yesterday Dustin had his first appointment at IU. The doctor had my mom and myself review the past seizures that he has had and explain what has happened with each one as best we could. Since Dustin obviously couldn't remember any of them he had to rely mainly on us. Dustin usually wouldn't remember the time leading up to the seizures or after them anyway. He did tell us he is concerned that the seizures when described do not seem like your 'typical' seizure and he is concerned with the quantity of seizures over such a short period of time. He seems to want to find out why this is happening. It really was such a relief to hear a doctor say that. Of course we as his family want to know why, but it's reassuring to have a medical professional want the same thing. We weren't able to bring a copy of the video EEG with us and the doctor couldn't tell us too much without reviewing this. So as soon as my mom is able to she will mail him a copy. He will review it and if it is clear to him what is happening in the EEG then they will use this one if anything is unclear then Dustin will have to have another one. Please, pray that this one is clear. He will do this again if he has to, but it's a long process. The doctor did say that he could not say at this time that Dustin will need brain surgery.  That was a big relief for Dustin, obviously. It did make him nervous that he had to mention it so many time while we were there, though. He did several reflex tests with him, did some quick memory tests and watched him walk and decided that there most likely was no brain damage. This is good because the doctor said since there doesn't seem to be any kind of other brain damage that the long term memories should come back. I do notice him doing little things that he probably doesn't pick up on. He called Ophelia, "O". He obviously could have picked up on this during the past couple of weeks, but he did it so automatically it makes me a little hopeful that some things will just return to him like this. The doctor really couldn't tell us too much without the video EEG so now we wait for it to be copied, mailed and reviewed. At that time the doctor will contact my mom to set up another appointment. I would like to ask you to pray that this happens quickly, but instead pray that it happens as God wills it to. Pray that the doctors take the time they need and that things are done wisely. Keep praying for Dustin at school. I think it's still hard, but he's adjusting well. He is pretty tired at night when he comes home, but he is on a lot of meds that wipe him out too. The doctor at IU did say that the amount of meds he is taking is not harmful and he should continue with them until something else is decided. Pray for the people that will influence him in his daily life. He is turning more to friends than his family and that means friends are who he will be learning everything from. As his family we would love it if he would come to us with everything, but we must remember that he is a 16 year old boy and feels most comfortable with his peers. He also is willing to meet with a friend of mine to talk about why God allows things like this to happen to us. Please pray for an open heart for Dustin and wisdom and guidance for the friend who will be explaining this. Thank you so much for all of your prayers so far. I can say that I've seen answered prayers in the last two weeks. Dustin hasn't had another grand mal seizure. That didn't seem very likely when we had talked with his neurologist two weeks ago today. He is back in school and things are slowly returning to a new normal for all of us...

Romans 8:25

But if we look forward to something we don't have yet, we must wait patiently and confidently. 

1 Peter 4:12-13

Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad-because these trials will make you partners with Christ in his suffering, and afterward you will have the wonderful joy of sharing in his glory when it is displayed to all the world.

03/16/09

The copy of the video eeg was not ready to take today, but Dr. Katarawala (I spelled it how it sounds so not sure if that is correct) gave us everything else we need and told my mom not to cancel the appointment. So Dustin's appointment is tomorrow at 10 am or 9am our time. I'm not sure exactly what will go on there. Dustin has been assured by the receptionist that it will be nothing more than a blood test. He is understandably very nervous about the possibility of brain surgery. My parents have told him that if it comes down to it the decision to have the surgery will be his, but it's their responsibility to make sure he gets the best care up until that point. Maybe we will find out after tomorrow that surgery isn't the only option. He hasn't had any grand mal seizures since he has been on the combination of two meds. Please pray for safe traveling, wisdom for the doctors, peace for Dustin and answers and understanding for all of us. 

Also, Janie and Ophelia are on their way home and should be here tomorrow morning around 5 am.  We can't wait! Please, pray for their safety while driving and that we get lots of time with both of them, but mostly Ophelia:)

03/15/09

Dustin went to school on Thursday and Friday. He was in such a great mood on Thursday and things seemed to be going pretty well. He even remembered something. My mom was telling him how he was shocking everyone in the hospital after he had his seizure during his video eeg. He told her that he remembered this and it was a very strange thing to remember something. 

Some people have asked how much of his memory he has. He remembers nothing. I don't understand how the brain works and how memories are stored so I obviously can't explain to you why he can remember how to shower or that orange juice is in the refrigerator. I can tell you that there is no way he is faking this. He doesn't remember which cabinet the glasses are in or that everyday he likes to eat pizza rolls with hot sauce or that if you ask to share his food he  tells you he hates to share food and he'll let you take something, but he won't be able to watch. He doesn't remember how to play football or draw or who his best friend was or who we are. He has to learn all of this. When he is around a lot of people he tends to just not make eye contact. It would be hard to look at people and not know whether they are your friend of 8 years, your aunt or a complete stranger. He told us he'd rather be the new kid where nobody knows him than the new kid where everyone knows him. I can see, though, where this memory loss thing is a hard thing to wrap your head around. You can't physically see it so of course you doubt it's validity. It's not like having a broken arm or stitches. This has been a problem with some of the kids at school. He's been called names and some kids have thrown things at him at lunch. Of course my mom can tell the principal this is happening and teachers can explain to the other kids what's going on,but ultimately these are things Dustin is going to have to deal with. They are things we are going to have to deal with. Maybe his memory will come back, but maybe it won't. He might draw again and he might not. It is very scary right now, for him,  to imagine having all of those memories come back. He doesn't know who he was before March 1st so how can he say he wants to be that person again? That is also hard for us as his family to hear. We miss him. We know how important his drawing and friends and football were to him. We somehow have to grieve that loss while being thankful that he is still here. Yesterday at church the pastor was explaining that we are stewards for God. Everything we have is really God's and we need to decide how God wants us to use it. If takes something away then we deal with it because it wasn't ours in the first place. I think we realize this with money, possessions, even our body, but our mind? It's hard to grasp that God has given us our mind and it's not ours. It is his and he has control over that too. As we go through this together and individually it's so easy to see how tragedy can let you fall farther away from God or bring you so much closer to him. It seems right now to me that there is no middle ground. There are so many times each day where I can see Satan working his way into our lives and bringing in doubt. Dustin has the constant question of why God would allow this to happen to him. How can we still worship and praise a God that would let us do this to him? It's so hard to explain to him right now. All I can say is that I can't imagine doing this without God. I can't imagine facing this without him. How would I do it and who would I turn to? I once again thank everyone for their continued prayers and support of Dustin and our family. Keep praying for peace and encouragement. Keep praying for understanding and acceptance. 

Dustin has a appointment at the IU med center on Tuesday. To make this appointment we have to have a copy of his video eeg. On Friday the neurologist called and said that it's possible the copy won't be ready by Tuesday. He asked my mom not to cancel the appointment until he knows for sure on Monday since it's very difficult to get in. So please pray that the copy will be made tomorrow and if not that another appointment can be made quickly. Trying to have patience as we wait on doctors and appointments is such a struggle. 

answered prayer

Today seemed to be a good day. I am so thankful for the many prayers and words of encouragement from everyone! They mean so much to Dustin and our family. Tonight after my mom told me how she and Dustin's day went and Dustin joked around with us a little I wondered did we over react yesterday? Maybe things aren't so hard. That was my first thought. It shouldn't have been. We reached out for prayers from everyone. Those prayers were heard and answered. I wish that when I saw that we had an easier day today I first would have thanked God. I wish I would have given him that glory instead of thinking it was something WE did. Thank you again for praying and continuing to pray. It's so easy when things are easier to continue our day without God. If we learn anything from this it's to rely and trust him all the time even when things are good. 

So, obviously today was a better day than yesterday. Dustin has an appointment to go to IU on the 17th. The nurse or receptionist assured my mom that nothing more invasive than a blood draw would be done at this appointment. I think that made him feel better. We are just so glad to finally be on our way to get some answers. 

Dustin decided today that he wanted a fauxhawk and both of his ears pierced. He's never wanted his ears pierced before, but a few of his friends have them pierced so I guess he assumed he should get his done first. At first my dad protested but then my mom reminded him that we girls got our ears pierced at 5 so he couldn't make Dustin wait till he was 18. I told him tonight that he had never wanted his ears pierced before. He said 'thanks for telling me now'. He figures if he gets his memory back and doesn't like them he'll just take them out. For now he is happy with  and I don't think that's a battle anyone wants to fight. His new haircut and 'bling' look pretty good.

We also found out today that the IU Med Center offers free inservices on epilepsy to teachers and staff. That was pretty encouraging. I think going back to school is something Dustin is probably very fearful of and possibly his teachers and peers as well. The more knowledge we can offer them the more comfortable they will probably feel. It will also be good to have the staff educated and hopefully they can help him in any struggles they see happening or foresee in the future.

Dustin is a die hard Cardinals fan, but since he can't remember this everyone has been insisting when they talk to him that he loves the Cubs. Fortunately for him his room is covered in Cardinals things so he knows where his loyalties are. He also didn't believe me tonight when I told him he usually cleans the bathroom ( I think he did until I smiled). He also doesn't seem to believe that he kept his room clean before last Tuesday either. 

Dustin will be going back to school tomorrow. My mom has been waiting for the Ativan shots to be approved by the insurance. Finally today she asked how much they were...$12! Seriously and another $12 for syringes. So, the meds have been purchased without insurance approval! How crazy but good that he will have them. I think he may be nervous about school, but also looking forward to his life getting back to normal. 

Again we thank you for your prayers and support. I"m so thankful to the people that posted the address on their blogs and for the people that we don't even know who have reached out and blessed us with their prayers. I really feel as though those prayers are being answered and will continue to be. I don't know what God's will is in this, but just knowing that he is in control is comforting. 

Remember to continue to ask God for peace for Dustin. I pray that he truly feels him in his life during this time. Pray for us as his family to turn to God at all times and that our faith will increase daily. Pray for my mom as she spends the most time with Dustin and it is trying and I know she misses her job and the students she worked with. Pray for Dustin as he returns to school tomorrow. Pray for wisdom and patience for his teachers and his friends. Pray for strength and encouragement for Dustin as he returns to a place that is now so unfamiliar to him and filled with people who will know him and he won't recognize. I can't even imagine what that will be like. Also, pray for the seizures and any seizure activity to cease. As he returns to school I'm sure he will be more stressed and pray that he can control his emotions and stay peaceful. 

Please, pray right now for peace and calm and if possible understanding for Dustin right now. He's scared, very scared. We just sat with him as he sobbed on the couch asking why we would do this to him and why God would do this to him. It's hard to explain and understand ourselves. Pray that we can somehow answer and comfort him as well. He is very scared about going to the hospital. Not having any memory of us is making this difficult for him and us. Please, continue to lift him up.

Thank you for keeping us in your thoughts and prayers, 

The Swansons

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33

What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of the things we cannot yet see.   Hebrews 11:1

IU

Dustin wasn't able to go to school today. Between the pharmacy, doctor and insurance the IV ativan hasn't arrived at the pharmacy yet and he needs to have this at school if he goes back. The ativan can be administered to him immediately if he has a seizure to hopefully stop it or decrease the intensity. So, mom has been on the phone all day with the neuro, pharmacy and inurance. They aslo took a trip to Walmart and Mom noticed that Dustin's arm was twitching. She said something to him about the commercial that was on the radio and had to repeat what she said to him because he didn't say anything. Finally, he commented back and she repeated what she said. He said he must have zoned out because he didn't even know the radio was on. When they got home Mom called the neurologist and he agreed that this was seizure activity and he is going to send him to the IU med center in Indianapolis. While at first this was what we didn't want it seems to be an answer to prayer now. He still has no memory before last Tuesday. This means he doesn't remember any of his family, his friends, how to play football, his teachers...he doesn't remember anything. It's like we're living with another person. We miss Dustin. He's here though and for the most part he is healthy. He didn't like the news of going to IU too much. I'm sure he's scared. Please, pray for peace for him and strength. Pray that he turns toward God right now and not away. I can't even imagine what he is going through. He must be so confused about his life. He doesn't remember what he loves or who he loves. Pray for the doctors that will be seeing him. They need wisdom and guidance. Pray that we continue as his family and friends to put our trust in God and remain faithful that he is in control of everythig.
Here is an article I found about memory loss and seizures: http://www.timesonline.co.uk/tol/life_and_style/health/article4635471.ece
I was also able to find this Dr's email and sent him an email so maybe you could also pray that he'll answer that email!
Oh, and on a lighter note if Dustin was going to lose his memory I wish I could implant a false one that he loves cleaning the bathroom, but so far no luck.

Happy 16th Birthday

Today is Dustin's 16th birthday...I didn't get any pictures, but I'll try to remember to before the day is over. He's kind of had a rough day. He still doesn't have his memory back since his last seizure on Tuesday. The neurologist expects it to come back so we're just trying to be as normal as possible. He has been hanging out with his friends a lot trying to get to know them again. My mom, dad and I went with Dustin to the school today to talk about him returning tomorrow. He is going to try going back the full day, but his meds still make him kind of tired and with not knowing anyone or anything about the school it could be a little overwhelming so he can leave if he gets too tired. The plan if he has a seizure is pretty simple. He has always been able to tell before it happens and although he doesn't remember now what this feels like we've tried to tell him so he can be aware that if he feels 'off' he needs to let someone know. The nurse will be contacted immediately and she will administer the ativan to stop the seizure. They are to then immediately call 911 and the neurologist. Dustin and I walked around the halls once. I tried to tell him where things were, but the school has changed a lot since I went there! He did want to go meet the art teacher, though. She showed him the spot in the school where she had asked him to paint a mural and told him he can still do it and take as long as he needs to. Dustin knows that he draws and has seen his drawings, but hasn't drawn anything in over a week. My dad suggested that he might want to try to see if he remembers anything. We're not sure still what is going on with his memory and my mom might try calling the neurologist again tomorrow. He became very agitated and manic again today and we thought he might have another seizure, but he took some of his sedatives and seemed a little better; he wasn't happy, though, about being so tired. I asked him if any of his friends had called to wish him a happy birthday. He said he had a lot of messages on the phone at midnight, but then he teared up and looked away and said he didn't know who they were from. That sucked. Tomorrow might be hard for him too. Please, keep him in your prayers as he makes it through his school day. I know he is worried that people may not believe him about

the memory loss, but it does seem to be real. I did find some information about transient epileptic amnesia. This is caused by silent seizures in the temporal lobe. We know that Dustin's seizures are originating from the temporal lobe so maybe something like this is happening. This is probably why his memory and emotions are so affected after his seizure as this part of the brain controls those functions. http://en.wikipedia.org/wiki/Transient_epileptic_amnesia...this link tells a little more about this type of seizure. It's difficult to get any answers right now. Epilepsy is such a broad disorder and seems to vary so much. 

"For I know the plans I have for you," says the Lord."They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me in earnest, you will find me when you see me. I will be found by you," says the Lord. 

Jeremiah 29:11-13

03/04/09

Dustin has recently been diagnosed with epilepsy. His seizures start in his upper left temporal lobe as a partial seizure and then spread throughout the brain into a grand mal seizure. They last an unusually long ammount of time even when on anti-seziure medicine. The one that was recorded during his hospital stay was 55 minutes and he was eventually given medicine to stop it. He is also falling in the small percent that cannot control their epilepsy with medication. He has failed two very strong and widely used seizure medicines already. He has also had a seizure while on the third medicine. His neurologist is now trying a combination of two drugs. He is not expecting them to work. If he does have another grand mal seizure my mom is to call the neurologist immediately and he will start the process of sending him to the IU Med Center. At that point there will be a couple of options one would be brain surgery and the other would be some kind of a device being implanted. Today he is still having significant seizure activity from his last seizure yesterday morning and his behavior is out of control. After our appointment, the neurologist observed some of his behaviors and wanted to admit him to the psych ward at the hospital. Dustin seems very confused, scared and agitated and it doesn't seem to be a good mix. He is so frustrated and I can't blame him. He wants to know what is going on and why and to top it off his brain is traumatized and not working right. It's hard for him to process everything. They took him by ambulance to the hospital. Right after they gave him some kind of sedation he started to twitch and his eyes rolled back, but he quickly came out of it. The staff seemed to think that he didn't go into a full seizure because of the meds they had just given him. They weren't able to keep him at the hospital and he seems to have calmed down some. So, right now we are waiting to see if this new medicine will work with the Keppra. The doctor doesn't seem to think that it will. I respect the doctor. He is compassionate and seems knowledgable. I can't put my trust in the doctor . I can only trust God with this. I know that he is in control. If it is his will the medicine will work. I'm asking everyone to pray for this. If the meds don't work I feel like we will be confident in knowing God had a different plan. Because of the ongoing seziure activity Dustin is also not himself. We miss him and it's heartbreaking to see him so hurt and confused and frustrated by all of this. Please, pray that the activity will stop and he can be himself again. Pray for peace for Dustin in all of this. He wants to know why God is doing this to him and it's hard to explain especially in the state he is in. Pray for our family. I know that we can go through this together and come out closer and with a deeper faith, but it won't be easy. Pray that we remember to thank God for this struggle and oppurtunity to grow closer to him. Pray that we remember god is in control and that our lives do have a purpose. Please, pray for his doctors and for wisdom...that they are guided by God in their decisions.