Hunting for Answers

Her room is full of art work that we did trying to stay awake all Tuesday night.

Eating breakfast after being up all night. We were trying so hard to keep her awake that last hour.

The last few days have been hard ones. With sleep deprivation the biggest issue. Tuesday night we needed to keep Alyssa awake all night so that she would sleep during the day for her Ictal-spect test. Amazingly, we succeeded. It was a LONG night but we were able to keep her awake until 8:15 Wednesday morning. We did crafts, played many games of Trouble (she beat me 7 out of 8 games! :)) and played a lot of Plants vs. Zombies on the DS. The last two hours were the toughest but we walked and walked the halls and did tickle monster the last 20 mins. When the nurse was all ready with the injection we told Alyssa that she could go a head and go to sleep. 9 seconds later she had a seizure and she set the new record for having the quickest Ictal-Spect test ever! It happened so fast that the nurse doing the test had to take a few breaths afterwards because she wasn't expecting it to happen so quickly! Once she was able to sleep she was out. She hardly remembers going down for the scan. I was worried that she would have a seizure during the scan but she had one right before it and then again right after it. She did a great job. After the scan was done she slept for awhile but was having a lot of seizures so they gave her some Ativan to calm her seizures. She was a little out of it for the rest of the day and pretty emotional.

I was so ready for a good night of sleep last night. Unfortunately that was not to be. She was having little seizures all evening and then after turning out the light for the night she was having a seizure every 5 minutes or so, just as she would start to doze off. After an 1 1/2 hours of this they decided to give her Ativan again. It helped stop the seizures, but unfortunately it wouldn't allow her to sleep. The poor girl was so miserable. She was a little bit zoned and had a period of seeing double. She would cry off and on and really wanted to just go home. I felt so helpless. We were both crying in frustration at one point. It was a long night but she finally fell asleep around 4 am.

At 10 am she went down for the final scan of her SPECT. After returning to the room we visited with the nurse practitioner, Molly. Molly is WONDERFUL and has a way of lifting your spirits and keeping your hopes up. Unfortunately, the scans are not providing us with the information that we need. Her seizures are coming from the frontal lobe in the midpoint, but they are coming from deep down in the brain and we haven't been able to tell from which side they are coming. They decided to go ahead and do a MEG scan as well. This scan is the most advanced technology that there is at looking at the brain. So we spent the afternoon having this scan done. Luckily there were no pokes involved and the people running the test were fantastic. Alyssa did a wonderful job once again at holding still and sleeping through the test. She even had a couple of seizures which will be good information.