Remarkable!

There is a reason why we call her Supergirl, and Taylor's appointment yesterday with her wonderful Neurologist, Dr. Bello-Espinosa, verified what we already know...that she is indeed remarkable.


At Taylor's Neurology appointment yesterday, with Dr. Bello-Espinosa

The first thing he went over was the cranial MRI that Taylor had on Friday. It shows a little immaturity and myelination delay, which is what he expected to see. No surprises. Except that her corpus callosum, which was once too thin (hypoplasia of the corpus callosum), is now well developed. Wondeful news.

We then talked about Taylor's last EEG, which was at the beginning of August. There was a 70% improvement from the previous EEG. But when I asked him how much improved it was from her worst EEG, he said 95%. Beyond our wildest dreams and expectations. 95% improvement over Taylor's worst seizure activity. Dr. Bello said that they have never seen a child with Lennox-Gastaut syndrome improve like this, never. In his own words, it's remarkable. He was beaming. She no longer fits the pattern of Lennox-Gastaut. We're in utter amazement over our special girl.

What does this mean? It means that the IVIG treatments are working. They don't even use IVIG for treatment of seizures anywhere else in Canada. But they have about 25 patients here at Alberta Children's Hospital on it. It may be a honeymoon phase and seizures could return, but for now, Taylor's brain is at its best and now is the best opportunity for us to see what she will be capable of developmentally. I feel like this is her year. She's already stronger. She's smiling. She turns three in a couple of weeks and I think if seizures can stay at bay, she has the potential to make great strides this year. Taylor's physiotherapist has always said that she believes Taylor will be able to sit independently at some point. As positive as I try to be for the most part, I have had trouble believing that. But now, oh I'm a believer alright. I see the possibility. What a dream that would be.

Dr. Bello brought a new colleague in to meet us, Dr. Morris Scantlebury. He's from New York and developed a model of infantile spasms. He is also amazed and intrigued by Taylor's dramatic improvement. He will be writing on her case for medical journals. Imagine that! We asked what the attraction to Calgary is. Apparently the Neuroscience Department here is the best in North America. So, not only is Taylor doing better than we could have imagined, she is in the very best hands here. We already knew that though, Dr. Bello is the best. We are so very grateful.

We talked about cerebral palsy, when the brain is not driving motor abilities. And that is definitely the case with Taylor. He agreed that she technically has Hypotonic Cerebral Palsy. Much rarer than the more typical spastic forms of the disorder. So we have another condition added to Taylor's list.

We also talked about Autism. Children with a history of infantile spasms have an increased likelihood (as high as 80%) of developing autism. This is a behavioural diagnosis involving failure to develop language, impaired socialization, and stereotypic repetitive movements. She does display autistic features and has the self-stimulatory behaviour (shakes her head back and forth, rocking, biting herself), but at this stage it's too soon to evaluate whether or not she has autism because the amount of seizure activity she's had and the chaos in her brain could be contributing to these features. They will be better able to more accurately evaluate the possibility of an autism diagnosis a little further down the road, perhaps a year, if her seizures stay at bay and her brain has the chance of allowing her to progress developmentally.

For now, my girl has a remarkable improvement in seizure activity. She has amazed her Neurologist. She continues to amaze us. Supergirl is flying high! And we're right up there with her.