Goodbye Mohawk

Over the last several weeks, we have been busy trying to get back to our regular lives. Seth continues to heal and is doing very well. He started back to school about a week ago and has been going partial days. Friday was his first full day back and he seems to be tolerating it well. He continues to wear out faster than usual and is still sleeping a bit more than normal, but his stamina is gradually increasing each day. Life certainly does go on, and Saturday felt somewhat symbolic as we headed to the barber and said goodbye to Seth's mohawk. His hair is growing back and although his incision is somewhat more visible with his new haircut, he looks healthy and strong and more adorable than ever. Most importantly, he has remained seizure free.

Seth had his follow up appointment with the neurosurgeon and his incision is healing very well. He continues to have some fluid and swelling on the left side of his head at the surgical site, but we are told this could remain for weeks, even up to a couple of months. Until the swelling resolves, Seth is unable to participate in gym class or any type of sport activities. He is at the point in his recovery when he feels well enough to be more active, and is frustrated by the things he is not permitted to do. Hopefully it won't be too much longer until he can fully participate in activities.

While Seth has been recovering, I have felt like I've been going through a sort of recovery process myself. I have had some difficult days as I have returned to work and back to day to day life. I have struggled to deal with the disappointment from not being able to complete the resection, with no relief from the worry or hyper-vigilance we have lived with for so long. I have mourned for what could have been. While we knew going into it there were no guarantees, we were so hopeful that this was the answer we had been searching for. Today I can say that each day is a little better, each week better than the last. I feel like I am emerging on the other side, and I know that we will be okay.

Back to Reality... Sort Of

Seth was discharged on Thursday and we arrived home late afternoon. He is doing well, but continues to have swelling that we are watching and frequent headaches. He has also continued to experience nausea periodically, so this is affecting his appetite. We are hopeful that over the next couple days we will see marked improvement.

On Friday, we took Seth to pick up Ethan and Aiden from school, and stopped in briefly to visit his class. Our school family has been wonderfully supportive, and his classmates were so happy to see him. Seth felt like a superstar! His classmates had brought in gifts for Seth and he was so overwhelmed  by everything that has been done for him. As his mother, I feel the same way. We have been so blessed and supported by so many through this whole process. It truly does bring comfort and help relieve some of the stress of a difficult situation.

We are all continuing to adjust back into our "normal" life. Our oldest son has exhibited some anger since we've been home and our youngest has been exceedingly upbeat. Tony, Seth and I are still quite tired but have enjoyed a couple nights of better sleep. Seth has shown increased agitation and frustration in some instances and we will continue to help him to deal with these situations, as we all work on getting back to reality.

Surgery #2

Seth went back into surgery yesterday to have his grids removed and then spent the night in the PICU for monitoring. His recovery so far has been better than after the first surgery, with less nausea and pain. In fact, several hours after surgery he was sitting up in bed and playing with Legos.

Today he was moved back to the neuro floor, and as long as he keeps progressing, we expect him to be discharged before the weekend. He is having some swelling on the left side, but not as much as after the first surgery. Pain is being pretty well controlled with medication. Considering this kid has had two brain surgeries in two weeks, I am amazed at his perseverance and recovery. I think we have hit the point where we are all ready to be home, but that is motivation for Seth to continue to do what the doctors recommend so we can get there.

Not What We Had Hoped For

I have given some thought to the post I would write when Seth had a seizure and we could move forward with the surgical resection. I have imagined the collective cheer from all those who have followed our journey and prayed for us and thought about the relief we would feel. Sadly, I will not be writing that post. After 14 days, Seth has not had a seizure and we are unable to complete the resection at this time. 

After meeting with Seth's neurologist and neurosurgeon, we have made the extremely difficult decision to have the grids removed. Seth will go into surgery tomorrow to have the grids removed and should be ready for discharge later this week. While Seth is still tolerating the grids fairly well and we could potentially wait another week, the chances that he will have a seizure at this point are very low. We have agonized over this decision and have decided this is the right thing to do for Seth at this moment. While I am sad and so very disappointed, I know that we did everything possible to try to induce a seizure, things that have worked for Seth in the past. I don't understand why these methods didn't work this time, but I have to believe that it was just not the right time. For now, we will allow Seth to heal, grieve what we could not achieve and when the time is right, we will consider the options and whether a second try at surgery is in Seth's future. 

No News is Not Good News

And still we wait... It seems that everyone here is surprised Seth has still not had a seizure. His EEG continues to show lots of irritability, but nothing has developed fully into a seizure. We are going to try a couple more nights of sleep deprivation to see if that produces desired results, but with each passing minute without a seizure, hope fades a little more.

Seth has done amazingly well through all of this. He continues to be cooperative and has remained his usual easygoing self for the most part. He did start leaking some fluid yesterday, so we are keeping a close eye on this as this could become an infection risk. If the leakage continues, they may go in and drain off some of the fluid that has accumulated.

It has been hard to want something so badly for Seth and to be so close, but yet unable to get there. I suppose I have started grieving a bit for what might not be. Nothing has been lost on this attempt, as we can still come back and try again at another time, although none of us wants to have to do so. While I don't feel ready to throw in the towel quite yet, I know we are nearing the time when a decision will need to be made.

Will Today be the Day?

It's hard not to feel discouraged when you are waiting. Today is day 10 since Seth's meds were stopped and we continue to wait. The anxiety increases day by day as we continue waiting and hoping for something to happen so we can move forward. Seth is doing remarkably well, all things considered. We are trying different tactics to try to induce seizure activity and Seth has started working with the recreation therapist as well. The hope is if we create situations that may be somewhat stressful, such as stopping in the middle of a fun activity to complete a less desirable task, this may trigger a seizure. Honestly at this point, I think I would be willing to try almost anything. I can't describe how desperately I want to be able to offer this opportunity to Seth to cure his seizures and not have to go home without the second surgery. Although I don't understand the wait, I have to believe there is a reason, although one we may never know. Maybe today will be the day...

We Need Seizures!

Once again I'm reminded of the roller coaster we're on with epilepsy. Life can be going along smoothly and then suddenly Seth is hit with a seizure out of nowhere. On the other hand, at times like now, we desperately need him to have a seizure and we've got nothing. 

Seth had a very good weekend with few complaints of pain, but no seizures. Unfortunately that means no surgery tomorrow. Surgery is going to be rescheduled for a week from tomorrow, but if Seth would start having seizures in the next day or so, there is a possibility that surgery could be completed on Friday of this week. At this point we still have time to wait. However, if we get to next Tuesday and Seth has still not had any seizures, then we will need to talk about a plan to remove the grids. Seth's neurosurgeon is comfortable leaving the grids in for up to three weeks, but will not go longer. 

If we get to next Tuesday with no seizures, there could be a possibility that the grids will have to be removed and we would be sent home without being able to complete the surgery at this time. With all that Seth has been through, I don't even want to think about this as a possibility, but I know that it could be a reality. I will be so very discouraged if this is the case. Right now I am going to do my best to remain hopeful that we will get what is needed to move forward with surgery. 

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Keeping an Eye On the Prize

Today was a good day. Seth had many visitors today, and despite extreme lack of sleep, seemed energized by the interactions. His brothers spent time with us today, along with his grandparents, aunt and cousins. It was nice to have a change of pace and Seth really enjoyed the attention. It felt good to spend time with Ethan and Aiden and to hear about their week. I am so proud of the way they handle themselves when I can't be there, and thankful for our family who takes good care of them while we are away. 

Today was day five off meds and after three consecutive nights of sleep deprivation, still we wait for seizures. At this point, unless Seth has multiple seizures very quickly, we will not be able to move forward with the second surgery on Tuesday. If that is the case, surgery would tentatively be rescheduled for the following week and we would continue with nightly sleep deprivation to attempt to induce seizure activity. Please pray that Seth's brain cooperates and seizures come soon. Not only are we all feeling physically and emotionally tired, but Tony and I want to get home to our other children as soon as possible as well.

While I do feel a little bit discouraged that things aren't moving exactly according to plan, I try to keep my eye on the long term outcome, not just the here and now. As Seth's neurosurgeon said this morning, we haven't come this far to stop before we complete the marathon. We may have to walk the last ten miles, but we're going to finish.  

Seizure Watch Continues

I want to thank you for all of the prayers, good thoughts and words of encouragement we have received. There are so many praying for Seth and it truly buoys our spirits to hear this. We are so grateful.

Seth's first night in the PICU was not very restful. He was nauseous and unable to keep fluids and pain meds down and was feeling a lot of discomfort. His left eye had swollen shut during the night due to the surgery, and since Seth already has low vision in his right eye, he was not able to see and was very frustrated by this. By late morning yesterday, he was given an IV pain med and anti nausea med, which had a sedative effect and caused him to sleep for much of the afternoon. Once Seth woke, he was able to start eating a bit and was able to keep down oral pain meds. He was moved to his regular room on the neuro floor and we started to gradually see that he was beginning to feel a little better.

As of yet, Seth has not had any seizures. He continues to have frequent abnormal electrical discharges in his brain, which appear to the neurologist to be centered in the left frontal area. This is consistent with previous data they have collected, but they will need to see seizures in order to confirm. In order to try to induce seizure activity, Seth's neurologist had ordered sleep deprivation for last night. This typically means that we keep him awake until midnight and then he is awakened at 5am. Seth was very restless and unable to sleep after we had kept him awake, and was having some stomach discomfort last night. He would sleep for 15-30 minutes and then would awaken and had difficulty finding a comfortable position and getting back to sleep. Not only that, it seemed that the slightest movement would set off the alarm on one of his monitors. Finally by 3:30am, he was able to fall asleep and was allowed to sleep until 6am this morning.

Today he has been able to eat and his appetite is slowly returning. Seth is not complaining of pain and the swelling in his eye is going down, so he can see enough to watch TV and play games. He is permitted to take short naps, and as his electrical discharges are most active as he falls asleep, we are hopeful that this will induce seizure activity for further data collection.

The plan is to continue with sleep deprivation again tonight. Although tired, we are feeling hopeful and are grateful for the excellent care Seth is receiving. Our hope is that seizures come soon so that we can move forward to the next step.

Surgery Day

Today Seth had the first of his surgeries in an attempt to alleviate his seizures. We arrived at Children’s at 6:30am and began preparations for Seth’s 8:30am surgery for insertion of the grids. Seth was happy this morning, we even saw a little of his usual silliness, but somewhat nervous as well. Shortly after 8:30am we said goodbye, and Seth was taken back to surgery. We received our first update around 10:30am that everything was going according to plan, and received another update a couple hours later from his neurologist that they had successfully placed the grids and were getting ready to close. We spoke with Seth’s neurosurgeon after surgery was completed, and breathed a sigh of relief that the first step had gone well. After being in recovery, Seth was taken for a CT scan and we met up with him around 4pm when he arrived in the PICU. Seth will stay in the PICU for the next day or so for monitoring before he is moved to the neuro unit.

Seth has 102 leads connected to his brain and skull, both internally and externally, to monitor his brain activity. We continue to see almost constant spikes in brain activity as he goes to sleep and while he is sleeping, but he has not had any seizures yet. He is quite uncomfortable this evening, as he has significant headache pain and is suffering from nausea due to the anesthesia. It is a helpless feeling when your child hurts and there is little you can do to make things better. I know he is comforted that his dad and I are here with him, so that is our purpose right now, just to provide what comfort we can. And once again, we wait…

Medication Reduction

Tonight we started tapering Seth's meds in preparation for surgery next week. He will be completely off one of his meds by the weekend, and will remain on his second med. If he goes through the weekend without any seizures, they may start tapering his second med on Monday. It is such a fine balance for them to taper so that he starts having seizures once he is in the hospital and after the grids are placed on Tuesday morning. As a parent, this is an anxious time and we are hypervigilant in monitoring Seth.

Tonight we also celebrated Seth's 10th birthday, which is still a few days away. We wanted to celebrate while he is still feeling good and able to participate with less risk of seizures to interrupt. Plus we wanted him to have time to play with his new toys and build his Lego sets before heading to the hospital. He was one surprised and very happy boy.

Happy birthday sweet boy! Hoping your 10th year is the best ever!

Less Than Two Weeks to Go

We are less than two weeks away from Seth's scheduled surgery and tomorrow we return to Children's for another MRI and pre-op labs. We will also be meeting with the anesthesiologist during our visit. Seth is delighted to miss school tomorrow and I feel thankful that he is enjoying simple pleasures and not feeling completely overwhelmed by what lies ahead. At the end of the day, he is still a nine year old boy (almost 10!) who finds great joy in teasing his brothers because they have school tomorrow and he doesn't. 

As anyone can imagine, I have been feeling a lot of stress and anxiety as we near the surgery date. I appreciate the friends and coworkers who ask about Seth, but then talk about normal, everyday things with me. I probably think about something related to Seth multiple times every hour of every day. I welcome the normalcy when friends and I can laugh about something silly that happened the night before, share parenting frustrations or complain about an issue at work. Because sometimes my thoughts about what is to come seem all consuming to me, I appreciate those who can just relate to me as Amy - friend, parent, coworker.

Goodbye Summer...

The summer has gone quickly and school starts later this week. Although we had hoped to have Seth's surgery completed this summer, we were not able to get it scheduled until September. We are quickly approaching his scheduled surgery date and I will be relieved when we get there. Waiting has been hard. Knowing what is to come, we are just ready to do it and get "the surgery" behind us.

We have prepared for the school year as usual, buying new school supplies, making sure uniforms fit and getting new school shoes. But preparing for a new school year for Seth also means educating the teachers and staff who will be working with Seth this year. That involves updating his seizure plan and making sure that everyone involved in his care and education is informed about Seth's epilepsy, what his seizures look like and what to do when he has a seizure. I need to make sure the school nurse is up to date on current medications and any changes or new information I have about Seth's seizures. I also need to make sure that classroom teachers, his tutor, speech therapist and school bus driver have access to information. In reality, I can't be there with Seth all day, every day, so I need to do what I can to make sure I have prepared his educational team with the information they need to handle Seth's seizures effectively and assure his safety while he is in their care.

While the lazy days of summer are coming to an end and the sometimes hectic schedule of the school year will be here before I know it, I am ready. I am ready for the school year, for Seth's surgery and look forward with hope to the future.

What Doesn't Kill You Makes You Stronger?

My youngest son was playing today and he often sings while he plays. From the other room I heard him singing the lyrics to Stronger by Kelly Clarkson - "what doesn't kill you makes you stronger..." I stopped and thought about the words coming from his mouth, wondering if they are really true. So many times people make comments about how strong I am because of what we're going through with Seth. Funny thing is, most days I don't feel strong at all. Some days, I wish I could give up and walk away, and not think about seizures or surgery or medical bills ever again. Many days I would rather pull the covers back over my head in the morning and sleep the day away, avoiding reality. I never wanted to know so much about the brain anyway.  I could be perfectly fine if I never had to think about anti-seizure drugs or spikes in brain activity or seizure precautions again. Why did I get picked for this role?

The thing is, I just don't have a better option. Whether I want to be or not, I am Seth's voice, his advocate and decision maker. As every parent wants, I too want what is best for my child. Unfortunately we've had to make some really tough decisions to try to get there, but I don't know if that makes me stronger. Will they be the right choices? Only time will tell. But I know in my heart that I am making the best decisions I can make for Seth right at this moment. And someday maybe I will know whether I really am stronger. 

Surgery is Scheduled

Since my last post, we survived what will forever be known as the Great Derecho of 2012 and the ensuing eight days without electricity. I am happy to report that we are back on the grid and enjoying the comforts of refrigeration and lights. 

We were recently contacted by the neurosurgeon's scheduling nurse and notified that Seth's surgeries have been scheduled for September 11th (the day after Seth's 10th birthday) and September 18th. While we had hoped to have surgery completed during the summer months to give Seth ample recovery time before the start of school, we weren't able to make it work. Therefore, he will start school for a couple weeks and then will be off for at least a month for the surgeries and recovery. After a couple weeks, providing there are no complications, he should be able to gradually start returning to normal activities. We have notified the school that he will need home tutoring throughout the recovery period, and will start the process of requesting those services next month. 

Once the grids are placed after the first surgery, we will need to wait for Seth to have a seizure, and the hope would be for him to have at least three, to get exact measurements of the seizure origination points and complete brain mapping. In order to prime Seth for seizures, his medications will be reduced a full week before the first surgery. Since Seth did not have any recordable seizures during his last inpatient stay for video EEG monitoring, of course I asked the question. What if? What if we wait an entire week and Seth has no seizures? If Seth does not have a seizure prior to 9/18, the second surgery would be delayed a week and we would continue to wait. They will not leave the grids placed any longer than three weeks, and I pray that we won't be waiting anywhere close to that length of time. 

Best case scenario, Seth would have a cluster of seizures within days of the grids being placed and we find that the seizures do not originate in either the language or movement areas of the brain. The second surgery would be performed as scheduled and we would be able to bring Seth home several days later to continue the recovery process at home. 

Although Seth has not wanted to talk much about his upcoming surgery, he seems to be accepting of what is to come. I am encouraged by Seth's faith and trust in me, and am pleased that his biggest concern right now is not missing a favorite TV show. Please pray for Seth's comfort, of both body and mind, throughout this whole process. While I have many concerns on my mind, the greatest is helping my sweet boy to come through this with peace of mind and a healthy brain and body. 

It's a Go!

After months of waiting and wondering, we found out some positive news today. We have been given the green light to proceed with surgery! All of the testing indicates that Seth is a good candidate and we have made the decision to go ahead and schedule surgery.

The surgery is actually a two part process. The first step involves them placing a grid directly onto Seth's brain surface in order to pinpoint the exact area where his seizures originate. Once the grid is placed, it would remain in place for at least several days and Seth would need to have at least one seizure. During this time, they would also map out Seth's language and movement areas. If the seizures originate within either of these areas, surgery could not be completed safely, they would remove the grids and we would not move forward. Otherwise, the next step would be the surgical resection in which they would remove the two areas where Seth's seizures originate. Best case scenario, Seth would have a 50-70% chance of becoming seizure free.

I feel both relived and terrified with our decision. I am so thankful this is an option for Seth, and hopeful that we get continued good news from here. We should know shortly when the surgery is scheduled and will continue to prepare Seth and the rest of our family for what's to come.

Little Disappointments

Sometimes I hate the way seizures disrupt our lives. Today is one of those days. Not only do I hate what they do to Seth, I also hate that they affect everyone else in the family too. I hate the way they sneak in and surprise us on an otherwise normal day. I hate the disappointment when our plans suddenly change. And most of all, I hate that I can't just fix it.

Today may have been the most gorgeous summer day we've had yet this year. As luck would have it, I had the afternoon off work, so the kids and I had planned to spend the afternoon enjoying the zoo. We piled into the van and headed North on the interstate. I noticed that Seth had fallen asleep in the van, and while not completely normal, it happens occasionally. We were more than halfway there when I heard a strange noise coming from the back of the van and realized Seth was seizing. We were near an exit, so I quickly exited and pulled off the road to monitor him until the seizure ended. The seizure was a longer one, lasting nearly five minutes. The other kids realized our plans had changed, and once Seth was able to respond, we started the drive back home.

Seth slept until we were a few minutes from home. When he awoke, he asked where we were, and I told him we had to come back home because he had a seizure on the way to the zoo. I immediately saw the disappointment and anger sweep across his face. The other kids were disappointed too, but they understood  and are pretty good at rolling with it. Generally I'm okay with it too, but today I just allowed myself to feel the disappointment, even wallow in it a bit. Because tomorrow is a new day and I'll find the hope in that.

Time Marches On

The last couple weeks have been blissfully uneventful on the seizure front. In that time, the school year has ended and summer is off to a good start with graduations and family get-togethers. Seth has been seizure free since Mother's Day and seems to be doing well. Time continues marching on and we are thankful for each day that passes without a seizure. So far this summer, we've had a couple opportunities for swimming at Lake Erie and my brother's pond. Due to the risk of seizure, Seth has to wear a life vest when swimming in murky water. Although this isn't his favorite thing, he has been cooperative and only slightly pushes the limits. I know he doesn't understand the danger, but that's okay. That's my job.

We have a follow up appointment scheduled with Seth's neurologist/epileptologist in two weeks and I'm not sure what to expect. I'm anxious to hear what is next and where we go from here. I don't know whether we can move forward without the ictal SPECT, or what new information may have been obtained from his most recent inpatient stay for long term EEG monitoring. I look forward to learning what's to come and am ever hopeful that we are one step closer to seizure freedom for Seth.

No Seizures is Normally a Good Thing...

Let me start off by saying that leaving Seth at the hospital on Wednesday was heartbreaking. Even though he was with his dad, I felt awful leaving him there, so far away from home. Not only was I leaving him, but I was also giving up control and my direct access to information. As a mom, this was not an easy thing for me. On the other hand, allowing Tony the opportunity to be there with Seth really helped him to become more connected to the whole process.

The week was a long one, as Seth did not have even one seizure while hospitalized this time. We were told this is fairly common and is related to the environment - being confined to bed in a hospital room and not doing any normal activities or having any typical demands placed upon him. It still baffles me that Seth can take his medication regularly at home, get adequate sleep, etc and still have seizures. But put him in a hospital room, take him completely off all meds and sleep deprive him for three consecutive nights and we get nothing. It was disappointing that we could not complete the testing, but it was not for lack of trying. We continued to see lots of spikes on the EEG from increased electrical activity in his brain, especially as he goes to sleep, but nothing that developed into a full fledged seizure. Seth did everything that was asked of him, despite being completely exhausted from lack of sleep and having a great deal of difficulty focusing and concentrating. 

Regardless, the week was not a complete loss. While they could not complete the ictal SPECT, which requires injection of the isotope within 30 seconds of the start of a seizure, they did complete the interictal SPECT on Friday. The interictal SPECT can only be completed when he has been seizure free for 48-72 hours, so this was accomplished prior to discharge on Friday afternoon. We will have a follow up appointment in the next couple weeks to discuss next steps.

Seth returned home on Friday evening and within 15 minutes was already fighting with his younger brother. While I welcomed the return to normalcy, I had hoped the honeymoon period would have lasted a little longer. Since I was home with our other two sons for a couple days this time while Seth was hospitalized, I saw the stress they felt from having our family separated, and from having their parents preoccupied with Seth's medical issues. I know it must be hard for them, and I want to do my best to make sure they're not feeling left out or less important through all of this. All three of them are amazing and inspiring to me.

Getting Good at Waiting

Seth and I arrived at Children's yesterday and have been somewhat patiently waiting for a seizure. It's so ironic that they come at the most unexpected times at home, and then when we're here, ready and waiting, we continue to wait.

 Getting the electrodes connected for the EEG

Working on a sticker book while we wait for a seizure

Seth still wasn't feeling well yesterday and had an elevated temp again last evening. Due to potential viral illness, he is on contact precautions, which means that any staff entering the room must wear a gown, gloves and mask. His temp has been normal today, so hopefully contact precautions will be lifted in the morning. Seth has been completely off one medication since Sunday, and we are continuing to taper his second med as well. Additionally, we did sleep deprivation last night and will continue until he has a seizure. We are also trying exercise to help induce a seizure, so Seth is using a recumbent bike periodically throughout the day. 

I'm not sure this is exactly what they had in mind...

Tomorrow Seth's Dad comes to stay with him, and I will go home to be with our other two sons. It's not ideal to have to leave mid-week, but necessary. Still hopeful that we will have some seizure activity before I leave, but it's looking more like the SPECT won't be completed until Thursday. Fingers crossed that we can make it happen!

Inpatient Again

Tomorrow morning Seth and I return to Children's for another inpatient stay for more testing. This time we are going to try again to complete the SPECT scan, which requires him to have a seizure, and be injected with an isotope within 30 seconds of the start of the seizure. This will help further pinpoint the areas of the brain that are active during a seizure. This also requires continual video EEG monitoring. Seth is not looking forward to more electrodes, but missing a week of school does sweeten the deal!

We started tapering Seth's meds on Friday night, and by this evening he is now down to one medication. He has had a cold for several days, and started feeling worse today. As the afternoon progressed, he was having chills and complained of a headache. Knowing that Seth is more prone to seizures during periods of illness, and due to the fact that he is on reduced medication, we were monitoring him closely. Shortly before 7pm he had a seizure that lasted several minutes and then spiked a fever. Seth's headache worsened afterward, and he was quite uncomfortable until the ibuprofen took effect and gave him some relief.

My hope for this week is that the SPECT can be completed. Once Seth is admitted, he has to have seizure activity before they will attempt the SPECT. Since we've already seen a seizure tonight, I'm keeping my fingers crossed that this will be accomplished, and quickly. Time will tell...

Feeling Hopeful

Seth had another follow up appointment today. Tony was able to go with us, as we had many questions and needed more information. It was a very good appointment, and we were able to get many answers. Some questions the doctors just don't have answers for yet, but they will come in time. The doctor spent a tremendous amount of time with us and put us both much more at ease. We are scheduling further testing and hope to only have to stay inpatient for a few days this time.

Recently, Seth has been asking some questions about surgery and expressing his fears. We have been open and honest with him, and have shared that we will do whatever is best for him. After dinner the other night, he told me that if we think brain surgery can help him, he will do it. This incredible boy continues to melt my heart with his trust in us and with his courageous attitude. What a blessing to be his mom! 

How Do You Say Yes? How Do You Say No?

When I look back over the last couple months, I realize that I was incredibly naive when we started down this road. I had no idea where we were headed, or how difficult this would be. Knowing what we know today, how do you say yes to brain surgery for your child? On the other hand, how do you say no? How do you weigh the potential benefits against the potential risks? The questions are agonizing and relentless. I find that I'm continually questioning and second guessing myself and our purpose.

We found out today that the neurologists have ordered additional testing, including a SPECT scan and functional MRI, which will require another inpatient stay. Because the SPECT could not be completed during Seth's last inpatient stay, this time they will completely strip him of medications to ensure that he will have a seizure so the scan can be completed. We do not yet know when this will be scheduled, but all indications are that it will be soon.

Your continued prayers and support are very much needed now. Please pray for all of us, but especially for strength for Tony and me, that we are able to confidently make the best decision for Seth's long term benefit. Your prayers and messages of support are truly appreciated.

Moving Forward

Today Seth had his follow up appointment with the neurologist/epileptologist and also had a neuropsych evaluation completed. The appointments were scheduled back to back - the follow up at 9:30am and the neuropsych at 10am, which would take six hours. I was a bit concerned about the logistics of completing the follow up and making it all the way across the hospital for the next appointment, but I figured if they had scheduled it that way, it was doable. Wrong!

When we signed in at Neurology, I informed the receptionist of our 10am appointment. Her eyes widened and she commented that the doctor was already running a bit behind, but recommended that I mention it to the nurse when we were called back. Just a few minutes later, the nurse came to get us and as she checked vitals, I told her of our next appointment. She was honest enough to say that we would never make it and suggested that I call Neuropsych and let them know the doctor was running behind and we may be an hour late. The nurse took us to a room and before I could call Neuropsych, she returned and said that since the doctor was running behind, we could go ahead to our next appointment and then return afterward to see the doctor. I told her that Seth's next appointment was a six hour evaluation, so unfortunately that plan was nixed. I proceeded to call Neuropsych and was put through to the psychologist. He explained that they really couldn't complete the testing in such a short time frame and suggested rescheduling for another day. Here's where the hopelessness started to set in. I had pulled Seth out of school for the day, taken the day off work, driven two hours to get there... In the end, both departments pulled together and took care of us. We were able to complete both appointments and I have the utmost respect and appreciation for doctors that value MY time and situation.

We received interesting results from Seth's long-term EEG monitoring and other testing. Testing shows that the area of concern is the left frontal area, not the area of scar tissue as suspected. The left frontal area is the area that controls executive functioning - organization, planning, multi-tasking - all areas where Seth struggles. At this point, both of the neurologists we have met with feel that Seth may be a good surgical candidate, but it is likely that further testing will be required. Seth is the next patient up for review when the surgical team convenes in the next two to three weeks. His doctors will present his case, including all his history and testing, and the team will decide whether to move forward. If the decision is yes, things may start to move very quickly. Further testing would likely be scheduled and surgery could potentially be this summer. If no, we will explore other medications and treatment options.

Seth also had a medication change today to address some side effects from one of the meds he was on. He has been seizure free for exactly one month today, so I hated to possibly upset his stability, but he was having some serious side effects - problems with thinking, information processing, word finding. We will monitor closely and pray for coverage with this new med, which has significantly less side effects.

Seth worked hard all day to complete the evaluation. The evaluation was only about a half hour late starting and they worked up until lunch. We broke for lunch, and Seth and I managed a little playground time before heading back indoors to complete the afternoon testing. Seth was happy there were no electrodes, but said that school is more fun! We will have results from the neuropsych evaluation in about three weeks and will have another follow up around that time.

Stealing a little playground time (note Seth's favorite tuxedo tee!)

Fire Drill!

As you may or may not be aware, people who have seizures are at risk for SUDEP - Sudden Unexplained Death in Epilepsy. Although this happens relatively infrequently, even once is too much for a parent or loved one of a person who has epilepsy. SUDEP typically occurs during sleep, which is why we have taken precautions to help alert us to seizure activity that might occur while Seth sleeps.

One of the precautions we have taken is to purchase a monitor for Seth's bed that alerts us to unusual movement. The monitor is placed under his mattress and emits a high pitched alarm when it detects sustained, unusual movement. This has given us some peace of mind, although we know that no technology is perfect. Last night at 12:23am, I was awakened by the alarm. My heart raced as I hurried to Seth's room, only to find him asleep, covered head to toe in his blankets. As I pulled the blanket off his head, Seth opened his sleepy eyes and told me he was okay. He explained that he was cold and his blanket was folded over so he was trying to pull it up. Apparently his movements were erratic and the sensors alerted, sounding the alarm. We have only had false positives a few times, and I would much rather be alerted than miss a seizure and suffer potentially devastating consequences. I will take the fire drill over the real thing any day!

More Video EEG Monitoring and PET Scan

On Wednesday we went back to Children's to continue Seth's testing. My mom went along with us to keep me company and to help keep Seth entertained since there is a lot of waiting. We left home before 7am to arrive in time and Seth waited patiently while the electrodes were again attached. Once they were all attached, he began four more hours of video EEG monitoring. Seth had to stay in bed during this time, but was able to play his video game, watch some TV and eat lunch. We also played many games of I Spy to pass the time, and found that Grandma is very competitive! While Seth was eating lunch, he had an IV placed in preparation for the PET scan. He is always so cooperative, and this day was no different.

The PET scan was scheduled for 1:30, but was delayed shortly before Seth was to go down for the scan. He was starting to get antsy, but after about a half hour we were finally able to head down to Nuclear Medicine. Two EEG Techs took Seth and the video EEG machine downstairs, as they wanted to keep Seth attached to the EEG until just before the PET scan was to start. Once downstairs, there were some difficulties with the EEG machine, which delayed the scan a bit further. Once things were up and running again, they injected the tracer for the PET scan and Seth had to lay quietly for a half hour. This means that he could not talk or interact, as they did not want to stimulate areas of his brain. This is significant for a nine year old boy, especially one who has been cooperative all day long. Seth always seems to step it up when needed and he did outstanding this time as well. Once the tracer was in his body for a half hour, the electrodes were quickly removed and he was taken for the PET scan. This involved about 15 more minutes of lying very still, and again Seth was successful. We headed back up to EEG to get the stubborn glue from the electrodes removed from his hair before heading for home.

I am so glad that the testing could be completed successfully. Had Seth not been able to be so cooperative and able to lay still for the scan, he would have had to be sedated. Currently Children's does not have the capacity to do PET scans under sedation, so this would have involved a trip to Ann Arbor, MI in order to complete this piece of the testing. Feeling thankful when things go as planned!

At one point while waiting for the PET scan, Seth fell asleep for about 15 minutes. We had seen during his inpatient stay as well that just before he falls asleep and during sleep, his brain waves are very active and there are a lot of spikes in activity, indicating increased electrical discharges. I am anxious to hear what the neurologist has to say about this. As of now, we have a follow-up appointment the second week of April, along with Seth's neuropsych evaluation.

More Testing to Come

Seth returned to school on Wednesday last week and was glad to see his friends and his teacher. His classmates were glad to see him too and kept a close eye on him all week. He hasn't had any seizures since Monday, so that is good news. However, there are some other issues of concern that we have noted.

At home, we have noticed that Seth seems confused at times and has forgotten a word he was trying to say a couple times. These are simple words that he uses regularly and on one occasion it took him about a minute to recall the word. Seth typically has a bit of a delay in giving responses, but this seems to have worsened as well. His attention span has also decreased. At school, he is having trouble understanding directions and following through with completing work. He has a tutor and is receiving additional assistance from his teacher, and they have both observed some changes. Seth has also verbalized that he doesn't understand what he is supposed to do. I will be following up with the neurologist/epileptologist this week to address our concerns.

We make another trip to Columbus on Wednesday, as Seth has a PET scan scheduled. Additionally, they will be putting him back on the EEG for a few hours to see how his EEG looks now that he has been back on meds for a couple weeks. My suspicion is that his medication is not up to the level to control the electrical discharges that occur repeatedly in his brain, but do not develop into full blown seizures. I can only imagine that this would make thinking and concentrating incredibly difficult.

I am anxious to get the results of all the testing, but I can't help but think that we have made things worse, if only for the short term. I hate seeing Seth struggle, and he is certainly aware that something doesn't feel right. If only a mother's kiss and a band-aid could heal this. I am holding on to hope that this will all be worthwhile and will benefit Seth in the long run.

It's a Monday

Seth had a good weekend and was excited to return to school today. I dropped the kids off at school this morning, went to work and was catching up with a coworker when I got a call from school, only 10 minutes after the start of school. Seth was having a seizure. I immediately went to school, arriving about 15 minutes later. He was asleep in the nurse's office by that time, and the nurse shared that he had a 4-5 minute seizure in the classroom. Even after the muscle contractions stopped, Seth continued to show signs of seizure, including eyes tracking back and forth beneath his eyelids and chewing mouth movements for several more minutes. This is commonly observed as Seth comes out of a seizure. The nurse helped me escort Seth out to my van, and I brought him home to rest and recover. He slept for most of the day, finally getting up mid-afternoon.

I consulted the neurologist, and again we are increasing one of his bedtime meds to attempt to control these breakthrough seizures. I was also informed that they are scheduling a PET scan, possibly as early as next week. The PET scan will help to further pinpoint where in the brain the seizures are originating. Scheduling this is a good sign, because it means that Seth has not yet been ruled out as a surgical candidate - another small victory.

Seth's seizure today happened in the classroom, in front of his classmates. I can't help but think this must have been a scary experience for many of them, and for his teacher. I know that they were concerned whether Seth was okay and were reassured that he was. I do worry that he might be teased or made fun of for his condition by a few who are not so kind and compassionate. He is such a kind-hearted boy, and I know it would crush him. So not only do I pray for relief for my child's physical condition, I also pray for acceptance.

Home!

We are home! It was a full day of testing yesterday, but Seth was finally able to be discharged around 8:30pm. Tony was worried about me driving home because he knew that I was very tired, but there was no way we were staying another night! We made it home safe and sound shortly after 10pm.

Despite eight hours of monitoring yesterday for the SPECT, Seth did not have a seizure within the time frame, so the scan could not be completed. We did everything possible to induce a seizure, including sleep deprivation, exercise and hyperventilation. Despite the efforts, it was not meant to be. He was able to complete the MRI however, and I feel confident that with data from six seizures and the MRI, we have a very solid base of information to work from. It will be about two weeks before the results are complete and the report is available. Seth has a follow up appointment scheduled in early April, along with a neuropsychological evaluation to help us understand how Seth learns and processes information. Once all of  the data is compiled and reviewed, further testing may be ordered.

Seth was discharged with two anti-seizure medications. He will be kept off  Depakote for now. After discussions with the neuro team, it was felt that the personality changes caused by the Depakote are significant enough to warrant keeping him off the medication. We will monitor him closely and may need to make adjustments if breakthrough seizures occur.

We are so relieved to have this step of the process completed and look forward to learning more about the options for Seth in the future. Even though the week was difficult, and I questioned our purpose at times, the time I was able to spend with Seth was priceless.

Feast or Famine

Part of the difficulty in dealing with seizures is the unpredictability. Yesterday Seth had four seizures throughout the day. We kept him awake last night for sleep deprivation and he had another seizure shortly after 1am this morning, cutting the sleep deprivation about an hour short. This morning, his monitoring for SPECT began at 7:30am and we have waited all day with no seizures. We have about a one hour window left to be able to complete the scan if he has a seizure in that time. If not, the scan won't be completed today. Once he comes off the EEG, he will go for an MRI and that will complete the testing for this week. He will likely be discharged later this evening. Hoping for one more seizure within the testing timeframe so we can leave here tonight knowing that they have all the data necessary at this point to move forward. Fingers crossed!

Rough Day

Today has turned into a really rough day for Seth. This afternoon, he has had three more seizures within a two hour period. With them coming so frequently and so close together, he didn't even have time to recover from one before the next one would begin. The seizures have lasted a bit longer and it is taking him longer to regain consciousness afterward. Since the seizures have increased so rapidly, they did order medication this afternoon and will give another dose tonight to slow them down. They don't want to stop the seizures completely at this point, because there is further testing planned for tomorrow.

Additionally, they have started an IV in the event that he goes into status epilepticus, meaning that a seizure doesn't stop, and they need to give Ativan to bring him out of the seizure. He will also need an IV port for tomorrow's testing, because they hope to be able to do a SPECT scan. This involves injecting a dye-like material into his vein within 10 seconds of a seizure starting so they can look at the blood flow in his brain. In preparation for tomorrow's scan, he will need to be sleep deprived again tonight. He will be monitored for a four hour period tomorrow morning by the EEG technologist and with a nurse at his bedside who can inject the tracer immediately upon the start of a seizure. Keeping fingers crossed that he will have one more seizure tomorrow so that the scan can be completed. This is just one more piece of information that will help determine the origin of the seizures in Seth's brain and whether he is a surgical candidate. I spoke with the neurologist/epileptologist this afternoon and so far the results look favorable for him to be a candidate, but they still need more information before a determination can be made.

It goes without saying that today has been a hard day and I feel very helpless. Your support and prayers mean so much and I'm sorry that I can't thank each one of you individually, but please know that your messages touch my heart and give me strength to push forward. Thank you for caring about Seth and our family.

Another Day, Another Seizure

Day Four begins and Seth has already had another seizure this morning. He had a fair night, but had difficulty staying asleep and was up for about an hour during the night. He woke this morning, ate a good breakfast and had played with his Star Wars figures before I started him working on some school work. Ironically, he was working on a booklet about the brain when he started to seize. This one lasted about four minutes and afterward he had a very severe headache, probably the worst he has ever had. He was in quite a bit of pain for about a half hour until the Ibuprofen took effect and he was able to sleep. The seizures take such a toll on him and this one was especially difficult to witness. Even though we are doing this for his long-term benefit, he is still just a little boy who is hurting and just wants to go home and see Daddy.

The feedback I have received from the attending neurologist is promising and makes everything worthwhile. They are getting some good data and want to continue monitoring until tomorrow. I am very encouraged and feel so proud of Seth for being so tolerant and cooperative through all of this. I am also proud of Ethan and Aiden, who have stepped up to do their part this week while Tony manages the home front. I am glad that we are on the home stretch, at least for this portion of the journey, and am ready to move forward from here.

Success = Relief

Feeling VERY thankful that we were able to record a seizure today! Yesterday afternoon we were informed that we would try sleep deprivation last night in an attempt to induce seizure activity. I had to keep Seth awake until midnight, which was a bit of a task, as his normal bedtime is 8pm. We are fairly strict about bedtime for him, knowing that lack of sleep can make him more prone to seizures. Seth was definitely ready for sleep when midnight rolled around, and he slept relatively soundly until we were awakened by the nurse at 5am. Then it was my job to keep Seth awake.

Not being a morning person myself, and already dealing with less sleep than normal, this was a struggle. Thankfully we did it and it paid off! Shortly after 8am, Seth had a two minute seizure. It was a typical seizure that we normally see with Seth, starting with his body stiffening, loss of consciousness and muscle contractions. The seizure was captured via EEG and video and the hospital staff was wonderfully competent and responsive. We hear that his neuro team is very excited! Even though I feel so helpless and heartbroken watching Seth have a seizure, I can't deny that I felt a huge sense of relief that we were able to document an episode.

After a seizure, Seth's body is totally exhausted. Today he slept off and on for several hours afterward and then was still tired and subdued until mid-afternoon. He complained of a headache afterward as well, which is normal for him as his body recovers. By late afternoon, his spunk had returned and I could tell he was feeling better. I know that the prayers and medical interventions are working, and am very encouraged. Thank you for keeping Seth and our family in your prayers.

We're Here... Now What?

Seth and I arrived at the hospital yesterday for admission and were escorted to our tiny home for the week. We met with the nurse practitioner to review history and better understand the plan. Seth then went down to EEG and waited patiently as all 30 electrodes were attached. We returned to his room, where video monitoring was set up and a baseline EEG was completed. Later in the day, we met with the attending neurologist and further discussed Seth's treatment plan, which includes further medication reduction. Below is a picture of the monitoring equipment, which records all of his brain activity and corresponding behavior.

As of now, Seth has been connected to the video EEG for nearly 24 hours with no observable seizures. Medication has been reduced further and they may try sleep deprivation and/or exercise to attempt to induce seizures, although I'm fairly certain that I am sufficiently sleep deprived and may be the one to have the seizure at this point! Neither of us slept well last night - Seth is missing his Dad and I was hyper-aware of every sound and movement he made. Typically when I hear those familiar gutteral sounds that indicate Seth is having a seizure, I get a pit in my stomach and a feeling of dread. How ironic that now I'm hoping against hope that the next sound he makes will be the start of a seizure. Maybe today will be the day.

So Far, So Good

Hooray for small victories! Seth made it through the week without having a seizure, even though we are reducing his medication. We have noted some other changes with the med reduction, both good and bad. Although Seth is typically easily distracted and has difficulty focusing, we have seen an increase this week. This isn't unexpected, as his most recent EEG results showed electrical discharges in his brain occurring every 10 seconds. Without medication to decrease these impulses, it is likely that they have increased, which makes it hard to imagine trying to concentrate, learn and focus on tasks. Despite this, he managed to make it through the week and for that we are grateful.

One positive change from this reduction is that we have seen more of Seth's personality as it used to be before medication. With medication, Seth has become more serious and subdued, even sad and angry. This week we have seen more of the smiling, happy-go-lucky boy that we know and love. As I write this, I realize how much I have missed him and how sad it makes me. For the moment, I am just going to embrace the time we have and enjoy my old Seth.

The Countdown Begins

One week from today, Seth and I will travel to Children's for his admission for long-term EEG monitoring. His stay could range from three to five days, depending on how quickly they are able to capture the information needed. The goal is for Seth to have at least one seizure during his stay so they can observe and evaluate information about what happens to Seth's brain when he has a seizure. In order to increase the chances that he will have seizures during his stay, we have a medication tapering schedule that we started tonight. The plan is to gradually decrease his medication each day this week, so that by the time he is admitted, he will be taking considerably less medication than normal in hopes of bringing on a seizure. They will also use sleep deprivation to try to induce seizure activity while he is hospitalized.

Logically I understand why this is necessary, but it's hard to withhold medication that I know Seth needs, and send him off to school knowing that he is at an increased risk and I can't protect him. My worrying gene is in high gear, and I'm sure it will be putting in plenty of overtime the next couple weeks. One of my fears is that he will start having more seizures this week, we will have to bump his meds back up, and then by the time we go for his admission they won't be able to record any seizure activity. Please say a prayer for Seth that all goes as planned and we can get the information we need to make the best decisions about his treatment.    

A Little History

I decided to start a blog to help keep family and friends up to date, increase epilepsy awareness and to connect with other families who live with similar experiences. We have been blessed with a wonderful support system to help us through the rough spots. This is our story.

Our middle son, Seth, was diagnosed with epilepsy in the Summer of 2007 after having his first seizure and undergoing EEG and MRI testing. We discovered that Seth has scar tissue in one area of his brain, which was believed to be the cause of the seizures. The cause of the scar tissue is unknown, as Seth has never had a brain infection or injury. This could have been caused by a lack of oxygen at birth, or it may just be how his brain developed in utero. Seth was started on medication and continued having breakthrough seizures every time he would become ill or get a fever. Each time this would happen, his medication would be increased. Eventually, a second medication was added and he remained stable for a time, but it was not sustained and Seth began to have seizure activity again. These were scary and frustrating times.

Currently, Seth takes three different medications twice daily and continues to have seizures. For this reason, we asked our neurologist for a referral to Nationwide Children's Hospital in Columbus, where Seth was seen for an initial evaluation in early February of this year. We were given huge amounts of information, and the neurologist explained to us for the first time that Seth's EEG and MRI show conflicting information, so this is puzzling to them. By looking at his MRI, it would appear that Seth's seizures originate from the area in his brain that has scar tissue. However, when they look at his EEG, it shows generalized seizure activity all over his brain and not just originating from the scarred area. It was recommended that Seth be scheduled for long term EEG monitoring, which would involve a three to five day hospital stay with video EEG monitoring in order to try to determine the cause of Seth's seizures. By determining whether his seizures are organically caused, due to the scarred area in his brain, or genetic, we can better determine a course of treatment. If it is confirmed that Seth's seizures are organic, he may be a candidate for brain surgery which could potentially stop his seizures. If genetic, he only has a 1-2% chance of ever being seizure free. It's a bit hard to swallow those odds, but we have started this ball rolling and we are determined to continue to move forward.