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!
Wednesday, April 25, 2012
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.
Tuesday, April 17, 2012
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.
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.
Thursday, April 12, 2012
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!)
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.
Sunday, April 1, 2012
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!
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!
Saturday, March 24, 2012
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.
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.
Sunday, March 18, 2012
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.
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.
Monday, March 12, 2012
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.
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.
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