SPECIAL EDUCATIONAL SERIES DIAGNOSTIC INSIGHTS ANALYZING GAIT CHANGES GROSS MOTOR SKILLS ORTHOTIC MANAGEMENT CLI N I CAL CASE STUDIES Sponsored by an educational grant from: In Step With Pediatric Hypotonia SureStep Product Catalog Page 29 In Step With Pediatric Hypotonia Contents VIEWPOINT FROM THE EDITOR: An Unexpected Path, Mobility and More an Invaluable Perspective At the most basic level, mobility is about get- PAGE 3 ting from point A to point B. But, for many children with hypotonia, it’s about so much 4 more. FEATURES It’s about independence. It’s about con- fidence. It’s about maintaining strength, fit- ness, and healthy bones. It’s about not being Understanding Hypotonia excluded from activities enjoyed by their PAGE 4 typically developing peers. And improved mobility may have even Gait: The Cornerstone more benefits in those children whose hy- potonia is associated with social and behav- of Intervention ioral developmental delays. New research PAGE 8 has identified an association between motor skills and sociobehavioral milestones in chil- 8 The Importance of Gross dren with autism spectrum disorder, who often present with hypotonia (see “The Im- Motor Skills portance of Gross Motor Skills,” page 12). PAGE 12 This suggests that early intervention to improve gross motor skills—including or- thotic devices and physical therapy—may Orthotic Solutions for also help certain children interact more Children with Hypotonia comfortably with others. That won’t come as PAGE 16 a surprise to the clinicians and parents who 12 have personally seen it happen. This special issue is filled with evidence- Orthotic Success Stories: based information and personal success sto- Four Cases in a Series ries illustrating how effective interventions can enhance mobility in children with hy- PAGE 20 potonia. That could literally be the first step toward drastically improving a child’s qual- ity of life. Not to mention their ability to get CATALOG from point A to point B. 16 SureStep Products BY JORDANA BIEZE FOSTER, EDITOR PAGE 29 2 | LERMAGAZINE.COM LER SPECIAL EDUCATIONAL SERIES BY SUZI KLIMEK Now 10 years old, she loves to play soccer, ride her bike She is a celebrity of sorts. However, because most children with Down syndrome have hypotonia, An Unexpected Path, or low muscle tone, we knew that needed to be addressed. Because of the hypotonia, our physical therapist said that Julia would benefit from supramalleolar orthoses (SMOs) to help her walk. She specifically rec- an Invaluable Perspective ommended SureStep. FOR THIS FAMILY, ONE TINY EXTRA CHROMOSOME We are lucky to live near the SureStep corporate headquarters. Julia LED TO A JOURNEY OF SELF DISCOVERY was 18 months old when she first started wearing SureStep SMOs, and she was walking shortly after that. Since then, she hasn’t stopped. Now 10 years old, she loves to play soccer, ride her bike, and climb on the playground jungle gym. When our son was born, we prayed for a healthy baby with 10 fingers It’s funny how things happen for a reason. If it weren’t for Julia, and 10 toes. Our prayers were answered. Three years later, those same my path would have never crossed with Bernie Veldman, owner and prayers were said for baby number two. And, once again, our prayers developer of SureStep, and I wouldn’t be the company’s executive direc- were answered. Baby number two was also born with 10 fingers and 10 tor of marketing. I’m thankful that I can work for a company that is so toes. But there was one microscopic addition: an extra copy of chromo- passionate about helping children with special needs. some 21. Otherwise known as: Down syndrome. As people in our community meet Julia, they are drawn to her Being told that your child was born this way—it was a shock. It’s charming personality. She is a celebrity of sorts. At a local clothing just not something you think will happen to you. store that we frequent on mommy–daughter days, one of the employees I remember when the doctor came into my room. He sat down next adores Julia and always asks her to model her clothes when she tries them to me and explained that our daughter likely had trisomy 21. I asked, on. Our son’s baseball team has adopted her as a member of their team. “What is trisomy 21?” It’s no different at school. Her classmates high-five her in the hall- At the time, my husband was at home with our 3-year-old son. I way, help her with her backpack, and open the door if she needs assis- called him crying and confused. When he arrived at the hospital, he tance. They even write her letters to tell her that she is their best friend. reassured me that everything was going to be OK. Julia is too young to understand her celebrity status, but I know “Julia is our daughter, and we love her unconditionally, so let’s just that all the love and attention she receives gives her the confidence she move forward and figure it out as we go,” he said. needs to develop into an even more amazing young lady. I can’t say that I rolled with it quite the same way. I cried—a lot. I As I look back on these 10 years, I wonder why I ever shed a tear kept asking, “Why us?” People kept telling me, “God doesn’t give you about having a child with Down syndrome. It was the path our family more than you can handle.” And I would reply, “Well…I think God was chosen to take, and I know we’re up for it. I could not imagine life any confused me with someone else!” other way. Without a doubt, our family and friends have been profoundly It wasn’t until I received the first sympathy card that it all made affected by this gift. The people we’ve met, the challenges we’ve faced, and sense to me. I tried not to be offended as I knew the intention was good. even my career choice have all been influenced by one little girl. It was then that I realized I didn’t have any reason to be sad. I was, and Her name is Julia. still am, blessed to have this child. She is our winning lottery ticket. But that didn’t mean it would be easy. Suzi Klimek lives with her husband and two children in Granger, IN. Originally from Wayzata, MN, she relocated to Granger after graduation Within days of Julia’s birth, we were connected with the Indiana from Saint Mary’s College in Notre Dame, IN. Klimek is the executive First Steps Early Intervention Program. Julia started physical therapy director of marketing for SureStep. at four weeks old. Developmental, occupational, and speech therapies A version of this article was previously published in the June 2011 soon followed. Julia was not born with any additional medical needs. issue of Family magazine. LERMAGAZINE.COM | 3 BY CHRISTINA HALL NETTLES Understanding Diagnostic challenges should not delay clinical intervention Hypotonıa Hypotonia, or abnormally low muscle independently from muscle weakness, al- Demographically, hypotonia affects tone, is by itself not a disorder but a though the two may coexist in some dis- both genders equally and is no more symptom of an enormous array of is- orders, such as motor neuron disease or likely to occur in one particular ethnic sues—many of which can be difficult to multiple sclerosis. Young children with or racial group than another. It is one diagnose accurately. Even in the absence hypotonia appear “floppy” and may pres- of the most common muscular abnor- of a specific underlying diagnosis, how- ent with inappropriate head lag, astasis, malities diagnosed in newborns with ever, children with hypotonia can benefit hypermobility, decreased deep tendon disorders such as Down syndrome, ce- from clinical intervention. reflexes, and problems sucking or swal- rebral palsy, Prader-Willi syndrome, and Hypotonia can result from dam- lowing. Older children with hypotonia Tay-Sachs disease yet, in some connec- age to the brain, spinal cord, nerves, or may exhibit delays in gross motor skills tive tissue disorders or certain muscular muscles, or may be a result of genetic, or coordination or problems with liga- dystrophies, low muscle tone may not muscular, or central nervous system ment and joint laxity, respiratory con- be revealed until later in life. Hypotonia 1,2 (CNS) disorders. The condition appears trol, posture, or speech. is an associated symptom among many 4 | LERMAGAZINE.COM “ Expertisematters in both performing diagnostic studies and assessing a child’s central, or combined hypotonia is the most efficient to providing a rational work-up. individual abilities.” Establishing a diagnosis is crucial for prog- nosis, management, and treatment strate- gies and for ascertaining an accurate recur- children with autism spectrum disor- Ronald D. Cohn, MD, chief of the rence risk for future offspring,” they wrote ders,3,4 but typically improves over time Division of Clinical and Metabolic Ge- in a 2011 study.6 and responds to clinical intervention. netics at The Hospital for Sick Children in Neuromuscular specialist for children Toronto, Canada, and an internationally Hypotonia in Thomas O. Crawford, MD, who treats pa- recognized specialist in the genetics and tients at Johns Hopkins Children’s Center clinical care of children with hypotonia, chromosomal in Baltimore, MD, estimates more than helped design a diagnostic algorithm to abnormalities 95% of patients he sees for hypotonia can streamline hypotonia assessment for cli- “Individuals with Down syndrome are at be evaluated with a comprehensive history nicians, distinguishing primary involve- risk for foot alignment problems due to and physical examination.