What does the EEG mean to us? Neurology experts don’t actually know the exact relationship between a ‘hypsarrhythmic’ EEG and Infantile Spasms, but the evidence is clear that the two go together. There are cases where infants have seizures without having a hypsarrhythmia and cases where infants have hypsarrhythmic EEGs without seizures. But where one is found, the other will almost certainly arrive, if not immediately, then eventually.
Those with other types of epilepsy/seizures only have abnormal EEGs when they’re actively having seizures, with most EEGs returning to normal after the seizure is over. But an infant with IS is hypsarrhythmic all/most of the time, even when he is not having seizures. Therefore, even when Kaleb was peacefully sleeping, he was hypsarrhythmic. And every time he seized (up to 90-100 times a day at his max), his brain was trying to reset all those abnormal crazy electrical brain waves.
A normal EEG means he is no longer (currently) hypsarrhythmic but it does not mean that he’s seizure-free, until we stop seeing the seizures (Kaleb’s last episode was over a week ago). Once the seizures are controlled, we try to normalize the EEG. Once the EEG is controlled, we try to control any possible breakthrough seizures. Then, we will do the EEG again, and the cycle continues, as the brain waves can become hypsarrhythmic again at any time without our knowing. The key is to fend off both the seizures and the hypsarrhythmia until he’s about 2-3 years old, when most kids outgrow Infantile Spasms. Then, we’ll need to be on the lookout for other types of seizures that will generally crop up later (around 5 years old) for kids who have suffered from IS, especially in symptomatic cases (like Kaleb’s).
But many IS kids don’t ever see seizure relief or normal EEGs. So the fact that we have had seizure-free days, and now our first normal EEG, means that we’re past one huge stride in this journey. Kaleb’s road ahead may now appear smoother than it did last week, but by the standard of any kid who hasn’t gone through IS, it’s still extremely treacherous.
We will continue to monitor him as closely as ever, and will always continue to pray and hope for him.
(Written on October 25, 2012, the day we obtained the results of Kaleb’s very first normal EEG.)
Addendum about long-term EEGs: 24hr EEGs, otherwise known as long-term EEGs/overnight EEGs/VEEGs, can last anywhere from 1-3 days and are used to: (1) make sure a patient is truly non-hypsarrhythmic [giving more confidence that hypsarrythmia is not ‘coming and going’ over days in a way that wouldn’t be caught by a 1hr EEG], (2) detect any other seizures which might be occurring, (3) rule out or confirm whether suspicious behaviors are actually indicative of seizure activity. They provide a wealth of answers to neurologists and parents alike, but are costly due to the overnight stay in a hospital.