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!