Wednesday, March 21, 2012

Good news? What is that?

Since going back to work Piper has changed a little. We’ve noticed that she’s more interactive over the last couple of months. She is looking at people more, using her hands to play with toys, smiling and laughing more as well as making more sounds. She is also not sleeping as much as she used to which is also very encouraging.

A couple of weeks ago Piper had an overnight EEG at Sick Kids. It was initiated because we questioned some unusual movements she was making. We weren’t sure whether they were seizures or not and the only way to tell was to have an EEG. So we went in on the Monday and Piper was out by 1pm on the Tuesday. She did all the movements that I questioned so I was happy with the session overall.

What happened next was surprising. The resident neurologist had come to my husband and said the initial findings were that the movements that Piper was having were not seizures. Phew, that was a relief. But he said he saw something else in her EEG. He said that her EEG was normal for a child her age. What? What happened to her confused brain? What happened to her hypsarythmia? My husband told me the news while I was at work and I started to cry. What was this feeling? It was something so unusual? Relief? Happiness? Renewed hope? I immediately caught my emotions and came back to reality. After 16 months of bad news it was only natural. I was hesitant and started questioning the validity of the EEG and this doctor’s opinion. As well I didn’t know what this meant. So I decided to wait until our appointment with the neurologist who had been following Piper on March 19. After all, what the resident doctor said is that they just looked at it quickly. I talked myself down and back to “reality”.

So on Monday we went to Sick Kids and met with the neurologist. HE confirmed it…Pipers EEG was normal, her hypsarythmia had disappeared. He said this happily and with a smile. Of course I was happy but I didn’t know what this meant. A lot of mentally disabled children have normal EEGs, so what did this mean for Piper? He said it was overall great news and that it would make it easier for Piper to learn, but we still didn’t know what she would be like in the future.

Next steps are to start to wean Piper off of the Vigabitrin over a 6 week period. We’ll then repeat the EEG at that time to see if her EEG comes out normal again. In the meantime we are starting up an intense 6 weeks of CME physio again hopeful that we will see some progress. I’ll keep you updated over the next few weeks on progress.

For me it’s given a little more hope that things CAN change. The brain is an amazing thing and no one really knows how it works or how much it can change. I’m still guarded, but I think that is natural considering all the crap we’ve been through over the last year. For now I’m going to remain hopeful and try to take time to enjoy a bit of good news…even if I can only allow myself 2 minutes of it.