Back in June, when Andrew was just recovering from a near-fatal encounter with necrotizing enterocolitis (NEC), we started to notice that his arms and legs would twitch. Sometimes, the twitches would come in clusters and would cause his tiny, swollen little limbs to fly up into the air. Four electroencephalogram (EEG) tests were completed on Andrew within a week. To our relief, the test results were not indicative of any seizure activity–but they certainly weren’t considered “normal” either. But if they weren’t seizures, what were they? This was the first time it occurred to us that there could be a possible aftermath to his encounter with NEC. A week later, with the results of a routine head ultrasound, the devastation from the infection was made clear. Andrew had periventricular leukomalacia (PVL), which is essentially the radiological equivalent to a later diagnosis of cerebral palsy and its accompanying complications.
Five and a half months after his last, Andrew had a fifth EEG this week. When most think of seizures, the idea of someone falling to the ground and shaking uncontrollably comes to mind. However, not all seizures are so obvious. Seizures come in many different forms, especially in babies. Other seizures are ONLY detected by an EEG.
We had an EEG done because of the following behaviors: constant crying, excessive yawning, lack of sleep, abnormal eye movements during sleep, and–most alarmingly–Andrew’s tendency to do the startle reflex 3-5 times in a row, multiple times a day. We wanted to rule out any underlying seizure activity. But the one we wanted to make SURE to rule out is a particularly devastating type of seizure called infantile spasms.
Here is a youtube video of a child having infantile spasms. Doesn’t LOOK so devastating, right? Don’t be fooled.
The good news: based on a 2.5 hour EEG study, it does not seem that Andrew has signs of the classic hypsarrhythmia wave patterns for infantile spasms, or any other obvious seizure disorder.
The bad news: Andrew’s brain wave patterns are diffusely slow. As stated multiple times by our neurologist: “His brain isn’t working very well.” Neither one of us felt compelled to ask what, exactly, that could mean in terms of prognosis.
A few pictures from Andrew’s EEG outing this week: