Brain regeneration in kids with cerebal palsy: feeling regroovy

The other day I took Max to see a cerebral palsy specialist, Joseph P. Dutkowsky, MD, at Columbia University. Dr. D., as he refers to himself, is the Associate Medical Director of the Weinberg Family Cerebral Palsy Center, amongst other impressive titles. He is an orthopedic surgeon but he has a big-picture overview of kids and adults with CP, as he's spent his career working with them. A mother of a girl with CP and advocate I met through social media, Michele Shusterman at CP Daily Living, had recommended him (and for that, I am forever grateful).

Dr. D. is a remarkably personable doc. Forget bedside manner—he was funny, charming with Max, and charmed by him. Max told him about his upcoming trip to Chicago, and proudly showed him the posts he's written here. Dr. D. called up the images taken of Max's brain when he was several old; I'd brought the discs. He glanced at the images and said to Max, "Let's have some fun!" Then he showed him where his eyeballs were on the scan. Max wanted to know why he had no hair.

I gave Dr. D. the background: The stroke at birth, the grim news we were given by the bigshot pediatric neurologist, the young intern who'd offered some hope when he talked about the plasticity of the brain. Max commando crawled at around 18 months, crawled on all fours at two, walked at three. He's had Botox over the years to alleviate tightness in his right hand, but we haven't needed it lately since it's loosened up. (You may recall my Mommy & Me Botox Clinic idea: A shot to help your child with CP, a shot for you to remedy the wrinkles caused by all that worrying.)

Dr. D. used a word I'd never heard before, "regrooving," a term he coined. As in, Max's brain had formed new pathways around the damaged areas—so that even if the original "insult" hasn't healed, other parts of the brain were compensating. He thought Max had done some major regrooving. "He walks beautifully," he said. He was impressed by his reading, including the fact that he was able to see the tiny type on my iPhone. He felt Max's muscles and was surprised that they didn't seem so stiff at all. He said he didn't present as having four-quad spastic CP, since he didn't detect hyperreflexia and clonus in him (involuntary muscle contractions and relaxations). Max's nonstandard pattern of movement is more asymmetrical mixed quadriplegic CP—but as he noted, "Since this sounds rather unhelpful, with a child like Max I just rely on descriptions, not terms."

That goes right along with what Max's pediatric neurologist has always told us: Look at what he's doing, not at his medical records.

Dr. D. pointed out that Max didn't have a whole lot of awareness of his right hand, which therapists tend to describe as his "helper" hand. This has to do with the damage in the parietal lobe, which control's self recognition or whether you're aware of what is part of you.

I wondered about how much Max's physical abilities would improve—whether he might gain more flexibility in his arms, whether his fingers would be more agile, whether his oral motor function (speech, eating, chewing, swallowing) would improve. "I have no reason to suggest that Max has plateaued," he said. Dr. D. couldn't give an answer, because no doctor can. In some ways the brain is still a mystery, even to the best experts. As the doctor noted in a followup email, "To what age can uninjured parts of the brain keep on compensating for damage? How much? For what functions? these questions are up for grabs and are why we need the National Institutes of Health to take CP seriously and give it the research funding compensatory to the nearly one million citizens with CP in the U.S. It's time."

During the visit, Dr. D. asked about Max's eyesight. It's normal now, but as a baby his focus was slow to come in. I can still remember bending down to say hello to him in his stroller. "Max! Max!" I'd say and I'd get sad that he wasn't able to look at my face, although I knew he heard me because he'd smile. He also had a habit of staring straight into the hatlights of our living room ceiling. That's a sign of Cortical Visual Impairment (CVI), which came up during our visit.

CVI doesn't have to do with eyesight but, rather, how the brain processes what the eye takes in, and is common in kids with cerebral palsy. (CP Daily Living has an excellent series and resources on CVI.). This might explain why math presents a major challenge to Max, since sorting visual information (say, stacked numbers in addition) is difficult. Dr. D. recommended he get evaluated by a teacher of the visually impaired, as part of his IEP.

I took this in pretty calmly. If Max does have CVI, then we'll better understand how to teach him, guide his therapy and organize his environment so his brain can more efficiently process what his eyes are seeing. Being on a high from the regrooving talk also helped buffer the mention of CVI.

On some level, I don't need a doctor to tell me how well Max is doing, because we were told the worst when he was born. Once your baseline expectations for your child are at rock bottom, there's nowhere to go but up. But really, it is cartwheel-inducing when a doctor says your child is doing well. 

I'm sharing all this not just to raise awareness about CVI or because I'm happy (SO happy) about the regrooving, but also because I wish I'd heard more about brain plasticity when Max was a tot and I was at my most anxious about him.

When Max was two years old, we discussed the possibility with his pediatric neurologist of getting a followup MRI to the one he'd had in the NICU. And we decided: What was that point? If the results didn't show much change in his brain since the stroke, then we'd get depressed. And if the results did show that cells were springing up around the damaged areas, like green grass cropping up after a long, gray winter, well, then, it wouldn't have told us much we didn't already know about Max's functioning. He's never had another MRI in his life.

I am an optimistic person by nature, but the NICU doctors left me feeling bleak about Max's future. My main source of hope was hearing about older kids who'd had strokes and cerebral palsy and other special needs who were doing OK for themselves. I needed real-life proof of the brain's potential to regenerate. I needed to believe. Now that Max is that older kid doing OK for himself—a kid who is very regroovy—I hope he gives parents out there the hope I once desperately sought.