GI, EEG, MRI

Macayla had a three day trip to the hospital for a follow-up EEG and MRI. It all went very well. Too well. She did not have any of the episodes we were most concerned about while hooked up to the EEG. As a matter of fact, she was more alert and interactive than usual. This isn’t the first time she has pulled that trick. But overall, it seems her seizures are in control compared to before. We have hardly noticed any of the seizures she used to have and after watching her on the EEG monitor, we wonder if what we think are those seizures are actually muscle spasms or behavioral. While the doctor was visiting us, Macayla had some movement in her arms that was typical of the seizures we used to see, but when the doctor looked at the EEG monitor, he said it wasn’t a seizure. So overall, seizures are down and that is good. It is most likely due to the fact that the part of the brain that was causing those has deteriorated. According to the EEG tech, there were some “focal spikes” on her EEG and that could indicate a higher probability of a focal seizure, but it doesn’t mean that a seizure is imminent. The only other possibility would be that she would be having seizures in a deeper recess of the brain and it doesn’t register on the electrodes as well. I also wonder if there is less conductivity between the brain and the electrodes since the brain has shrunk and is not as close to the skull, but I have not been able to ask that question yet. We will wait for a full report on the EEG, but overall her seizure activity is much less. After the EEG she had an MRI and we hope to hear about that in the next couple of days. As far as GI, she has yet to tolerate a full-day’s worth of calories. She gets irritated toward the end of the day while feeding. But the color of her stomach contents seems to be making baby steps toward clearing up. We have had to spread out her feedings to smaller amounts more frequently and that is what she is doing today. We are experimenting with scheduling and the mixing of formula to find what works and is efficient, but our goal today is to get 1000 calories in her. The x-ray of her lower abdomen came back normal, so we are pretty sure that it is an inflammation and not a back up. She may have become allergic or intolerant of her formula so changing to EleCare may help that. Unless she gets worse, we are holding off on anything invasive.