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.