What Do I Do First? – KAREN PAPE, MD

This 4-year-old boy has Diplegia. His speech is clear, but he runs out of breath. This difficulty is NOT a brain problem, it is caused by trunk weakness. Putting him in a SPIO Classic TLSO has an immediate effect on his breath control and speech.

His neurologic problem is diplegia, primarily affecting his legs. He walks in a posterior walker and moves about by crawling in 4-point or on high knees. But, without a stable trunk, his motor skills had plateaued over the past few years. During an intensive with Pia Stampe at Step by Step Therapy Center in Rochester, NY, he made rapid gains…. even a few independent steps! I will post more about his progress over the next few weeks. The answer to the question, “what to do first” is to support the trunk if it is weak! Athletes, with exceptional neuromotor systems understand that good movement patterns start from a stable base and muscles strengthen faster and better if they are worked in correct alignment.

Since the publication of my book, The Boy Who Could Run But Not Walk, the most common question I receive is, “what do I do first?” When a child has multiple problems…and multiple different healthcare providers…all pushing for their particular goals, it is not surprising that parents are often left trying to make the best choices based on limited information, time and money. In my book, I discuss the concept of Personalized Neurorehabilitation for children, teens and adults with cerebral palsy and other early acquired brain or nerve problems. (Chapter 7) The problem is that this sort of assessment takes time and is largely non-reimbursable for the practitioners. When I directed the Magee Clinic in Toronto, I ran into fierce opposition from the defenders of the past. Now, 20 years later, there is a growing awareness that we all have to stop and do a comprehensive overview, head to toe, of all the issues a particular child faces on a yearly basis. Then, and only then, are parents and their team able to prioritize and set sequential goals for improvement. Unfortunately, getting more personalized neurorehabilitation will require a system change in most programs. The good news is that if the demand is great enough, change will happen.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
Margaret Mead, my personal hero!

For this child, trunk support is the key to breath control and I expect improved strength to develop with correct alignment. Your therapist is the one to help decide which type of support is best suited for your child. This post… Core Support Options has a few options.

I am very interested to hear from both parents and therapists about your most important questions. I no longer see patients in clinical practice, but am happy to discuss what I have learned over the past 40+ years. Of course, you should run any advice you read on this site by your physician and healthcare team to see if it is appropriate for your child before adding it your program.

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