"Justin" Swanson

I've had requests from some to update the blog. I've kind of strayed away from updating because now that we sort of know what is going on with Dustin having Epilepsy is something he is learning to live with. We aren't going to the hospital any longer with every seizure. He is still on the same seizure meds, but at his last visit they did add a med for his migraines. As of last week, he told my mom that the new med seemed to be helping with his headaches.

He is still missing quite a bit of school. The seizures still aren't controlled and along with them he does get migraines. The school(Mrs.Walters especially) has been great about keeping my mom informed about missing assignments and giving him some help during the day to keep organized and on task. I'm not sure if he is doing his part on still getting the homework completed, but we've given him tons of help so it's really up to him now.

I think Dustin's life has, inevitably, been impacted by having Epilepsy. He has decided that he wants to become an art therapist. He is a talented artist and very caring and sensitive towards others(unless you are his sister) so this seems like a natural career path for him. He will really need to start applying himself at school, but hopefully this might motivate him. On March 9th Dustin will turn seventeen. I think on of the most difficult things about this year for him has been not being able to drive. I remember not being able to wait to get my license as most teens(except Jenna...she takes after my 82 year old grandmother who has never driven). Dustin started having the seizures just a month before his 16th birthday so all dreams of the independence that comes with driving have been put on hold.

If Dustin's life weren't crazy enough he recently was stabbed during a "home invasion". He had stayed home from school last Monday with a migraine. My mom didn't lock the door because my dad was working just three houses down from theirs. Around 10 o'clock my dad came home and dropped off the dog who had spent the morning with him. He put Jersey into Dustin's room. At this time Dustin was sound asleep. Sometime between 10 and 1:00 Dustin woke up to a bang and heard someone talking. He thought it was my dad and left his room. He heard another voice and Jersey was still sleeping. He shut the door to his room so she wouldn't wake up since she can get really hyper when new people are in the house. He went downstairs and halfway down realized that it wasn't my dad, but two people wearing ski masks ransacking my parents house! We don't have a land line phone upstairs and his cell phone was downstairs on the dining room table. I believe if it had been me in this situation I would have run out of the house. Dustin decided to tackle the guy closest to him. He got that guy down and went after the other guy who was in the kitchen and was getting a knife out of the draw. My parents don't have many drawers in the kitchen and the knives are in the top one so they aren't difficult to find. He struggled with this guy and ended up getting stabbed in the leg. The "home invaders" then ran out of the house and Dustin pulled the knife out of his leg. I'm sure if I had been stabbed I would assume I was dying. He called 911 and they stayed on the phone with him until the ambulance and police arrived. Dustin used one of Jenna's scarves to tie around his leg to stop the bleeding...I'm not sure she has forgiven him yet. The entire time my dad was obliviously working down the road. He heard the first responders drive by with their sirens on and realized they sound stopped quickly after he heard them. He ran around the house and saw the truck was parked outside of his house. He started to run home but decided that probably wasn't a good idea and settled on a brisk walk. In the meantime, an ambulance and police car pulled up to the house as well. He told us he was panicking, but knew that if an ambulance was called then Dustin had to call them himself since he was the only one home so he must be somewhat okay. One of the first responders met him outside and said "Everything is okay, but there was a stabbing.". I can't even imagine what my dad was feeling. He assumed the were there for a seizure. He raced into the house to see Dustin on the floor and his bloody pants and shorts (because he wears like 3 pairs of short/pants at a time) being cut off of him.

Dustin was taken to the ER in LaPorte and it was weird being there for something non-epilepsy related. He had an MRI done to determine that there was nothing left in the wound and the bone was okay. The knife did go all the way in, but he was very lucky in that it didn't hit anything or chip the bone. He didn't even need stitches. Apparently, for stab wounds you don't get stitches because of the depth of the wound.

The Harold Argus wrote an article on the incident and referred to him as "Justin" which he is none to happy about. I guess that's was the name on the police report. I think my parents wanted to really name him Justin anyway, but thought it would be too confusing with Janie and Jenna. There were many comments written on the on-line article. I don't think it's surprising. It seems there are some people whose lives are fulfilled by commenting horrible things throughout the day on these articles. Is it an unbelievable story? Um, yes, he was stabbed in the leg during a robbery in the middle of the day in UNION MILLS! Could he be lying...extremely doubtful. We saw the house afterwards, there was money missing that would have been easy to find and take, and HE WAS STABBED! I know my brother and trust me he couldn't stab himself in the leg!!

So, we have a lot to be thankful for. Dustin is really liking his new medicine and it seems to be helping. His school is doing a great job(as far as I know) keeping my parents updated and offering Dustin extra help. I do pray that Dustin starts to realize how important his education is. Although he was stabbed it could have been much worse. We are thankful my dad was so close, that everyone responded quickly and that the injury wasn't worse than it was. Also, my mom is doing well with her medicine and may be considered in remission if she continues to do as well as she is. Thank you for your continued thoughts and prayers for our family!

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels, nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:37-39

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...