I’ve heard many talk about the 7 stages of grief not only when it comes to a loved one passing, but also when you receive news that is life changing.
For 15 months I’ve been concerned about my daughter having potential seizures. She has always had abnormal eye movements, and gazing periods. This past summer we had a video EEG done which showed a Hypsarrhythmia (abnormal spikes in the brainwaves). The first thought was that it was Infantile Spasms so she was put on a med called Vigabatrin. All I remember of that moment was my sweet little girls heart rate dropping quite low, and being in an almost comatose state. A second EEG showed that the Hypsarrhythmia hadn’t improved and I told the docs I want my ladybug off those drugs.
Fast forward to our current stay at the hospital. I wanted to get neurology on board right away. Especially considering the “episodes” that ladybug is having seemed to be more and more frequent. After speaking with neurology the first time it brought me back to when we were waiting for the CDG diagnosis. Part of me hoped that the test would come back positive so at least we would know what was going on. Then the other part hoped that they wouldn’t find anything.
Today we got an answer – my sweet little ladybug is having seizures. Any CDG parent will tell you that seizures are one of the main things you pray your child will be spared of. Because they are more common in type 1, I never really thought that we would have to worry about this.
I find myself, strangely enough, in denial. It’s crazy considering I’ve been pushing for over a year to see if these “episodes” were seizures. I keep thinking to myself, maybe they are wrong. Maybe it’s just a quirky little eye movement thing that she’ll have going on. Maybe it’s a new form of super hyper nystagmus and we’re the first case ever. It can’t be seizures, she’s still a baby, she already has so much going on with her little body.
Tomorrow we speak with the neurology nurse who will explain the new medication called Topamax that ladybug will likely start mid morning.
So now we wait and hope that these meds will help, and won’t keep my happy baby girl captive under a sedated spell – but release her from the one that the seizures have held over her for the past 15 months.