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.