special needs

March 21 was World Down Syndrome day, and our own Dr. Louis DeCaro, DPM participated in an interview on Mass Appeal, along with cardiologist Meaghan Doherty, MD, on some of the advances made in the treatment of people (particularly children) with Down Syndrome. They brought along superstar Ella, who definitely upped the cuteness factor! Ella has been wearing our littleSTEPS foot orthotics since she was about 2. Check out the interview HERE

The Importance of Treating Feet in Children with Down Syndrome – Part 1

By Dr. Louis J. DeCaro with permission from ACFAP QUARTERLY

The Responsibility of the Pediatric Podiatrist

The goal of any practitioner, no matter what their specialty, should be to better the lives of their patients using every tool available to them without bias. As podiatric physicians we have the unique ability to use all forms of medicine, including surgery, on our patients. It is my belief that a well-rounded podiatrist should be someone who recognizes the implications of foot ailments at the earliest of ages in order to prevent adult problems. That is why I have chosen to specialize in podopediatrics.

The feet are the foundation of the body, and from the first step a child takes, deficiencies in the lower extremity begin to create a destructive domino effect on the rest of the human body. It is our job as podiatrists to make sure the feet are taken care of. Whether a child has a simple or complicated medical history, their feet should be screened and treated like those of anyone else. Children with the diagnosis of Down syndrome are no exception.

“Normal” Development of the Pediatric Foot

Let’s talk about what should occur with foot maturation of any child regardless of other medical diagnoses. At the age of 2 years old, the heel bone should sit at about 4 degrees or so everted (means that when you look from the back of someone the heel bone looks like its collapsing down and in.) From 2 years old until 6 years old the “normal foot” should lose about 1 degree of the “eversion” per year and at the age of 6 the heel should stand somewhat “straight up.” This allows an arch to be present. The foot support is on the outside, bringing the center of gravity to a more neutral  stance. Another phenomenon that is “supposed to happen” as we grow older from the age of 0-6/7 is that our lower leg bones start to turn out, and we get a more erect stance. For a majority of those with Down syndrome these two “normal” processes do not occur adequately.

The Down Syndrome Patient

In a patient diagnosed with Down syndrome, there are a multitude of concerns which may be present involving the heart, digestive system, spine, eyes, intellect, joints and mobility. Individuals with Down syndrome typically have problems with collagen, which is the major protein that makes up ligaments, tendons, cartilage, bone and the support structure of the skin. This creates significant laxity from the feet up, thus beginning at a young age the life long destruction of the kinetic chain. “Almost all of the conditions that affect the bones and joints of people with Down syndrome arise from the abnormal collagen found in Down syndrome.”1 The resulting effect in 88% of the Down syndrome population is hypotonia, ligamentous laxity and/ or hyper-mobility of the joints.2 The combination of this ligamentous laxity and low muscle tone contribute to orthopedic problems in people with Down syndrome.

Within the feet, the most common foot problems which can be found in the Down Syndrome patient are “digital deformities, hallux abducto valgus, pes plano valgus, metatarsus primus adductus, hyper mobile 1st ray, brachymetatarsia, haglunds’ deformity, syndactaly and Tailors bunion.”2 Genu valgus and subluxation and/or dislocation of the patella are another concern due to this condition. Hip and spinal issues are often seen as well.1 Overall laxity of the feet has been reported in 88% of children with Down syndrome.3 This percentage is far higher than those without, yet what I see is that often their feet are ignored. The primary medical diagnosis seems to trump the importance of good foot health. I’m here to say it should not. All medical issues should be addressed.

Specifically the Feet

Many patients with Down syndrome have flat feet due to laxity, which we know will not cure itself. We need to screen for this early. This troubling flexible flat foot can be spotted at  a very young age. Unlike many children though, this flat presentation does not go away by the age of 3 but continues causing foundational destruction to the rest of the body as the years go on.

What I have seen with my young Down syndrome patients is an inability of the heel bone to come out of eversion. When that happens the arch, the ankle, and inevitably the rest of the body stay flat and become “dragged down” toward the midline. This causes many kids with DS to have trouble sustaining good strength when they stand and building good core musculature. This “collapse” will impair normal external rotation of some long bones of the body, which leads to multiple postural changes. As well, when physical therapy is called upon to strengthen the child, failure or delay of achieving a strong kinetic chain is inevitable. You can’t build on a poor foundation! Not only will the structure not support it, but due to poor foot alignment the muscles during the exercises may not even fire.

Quality of Life Factors for Down Syndrome Patients

According to Benoit, “when a person has limited ability for movement, there is bound to be some restriction in exposure to learning opportunities and social stimulation, and this privation tends to be reflected in depressed intellectual ability.”4 In other words, by allowing the patient to be more mobile, the patient’s overall well being will be increased. This is critical since those with Down syndrome are living twice as long as they were 25 years ago.5 In fact, studies have shown that those with Down syndrome live longer when they have developed good self-help skills.6 What better way to encourage self-help than to enable a patient to walk, run and be physically active over the course of a lifetime? It is a known fact that with Down syndrome comes an increased incidence of Alzheimer’s disease. With that typically comes an increase in proteins called Amyloids. Researchers at Washington University in St. Louis found that there was a correlation between a sedentary lifestyle and a higher level of amyloid deposition.7 Thus, the science is once again telling us that inactivity can lead to an early demise. Obesity is also common in Down syndrome patients, partially due to inactivity. By correcting the biomechanics, inactivity may be lessened and quality of life may be increased.

Treating the Pediatric Foot

As a pediatric specialist, now with 11 years of experience, what I find troubling is that identifying problem feet at an early age is non-existent in the medical community. This is especially true in those with Down syndrome. Not only are the feet typically last to be looked at but also being that there can be a plethora of other ailments, the feet get little notice. I try to base my practice on the simple fact that “feet are feet!” A person’s foot type is their foot type no matter what medical condition they may or may not have. Unbeknownst to them, many practitioners fall guilty of not recognizing and treating important issues like flat feet when they become focused on what they deem “larger problems.” I have made it a personal mission of mine to get out to groups across the country, such as parental Down syndrome support groups, pediatricians, fellow podiatrists, Early Intervention specialists, PT’s and OT’s and various other specialists, and lecture on the importance of recognizing the feet and its association of their improvement with improved quality of life.

The Overall Plan

Orthoses need to be specifically designed to improve coordination, balance, pain, posture, and strength, and to aid in the development of a more stable and functional gait. These orthoses should be comprised of a deep heel cup, a medial heel skive, and high medial and lateral sidewall flanges. (FIGURE 1) Control of the subtalar joint is paramount. Often kids are over-braced with AFO’s due to lack of foot control. By providing adequate foot control, SMO’s and AFO’s are often times not necessary. I find many children who are “over-braced” lack necessary joint movements and muscle development vital for normal growth and maturity.

Complementary solutions to Early Biomechanical Support

Physical Therapy progress typically associated with Down syndrome motor development is slow; and instead of walking by 12 to 14 months as other children do, children with Down syndrome usually learn to walk between 15 to 36 months. Specific physical therapy recommendations to consider, along with inserts/ orthotics/SMO’s, include: “Strengthening of lower extremity musculature (hips, knees, ankles, and feet) aimed at improving push off
and augmenting support of the knee joint. Heel cord stretching with the heel in neutral alignment when limited passive range of motion exists. Lastly, Dynamic balance activities, such as running or descending stairs, which encourage the child to shift their weight during late swing phase rather than waiting until heel contact.” 8 These are very good  recommendations. I, along with many therapists in my area of practice, am seeing that when orthotic inserts are prescribed along with physical therapy, the improvement really sticks and builds. I see children in therapy all the time that have these everted/flat feet who just either never or too slowly build on strength absent there orthotics. Building better foundation helps those muscles move along faster.

Getting the Down Syndrome Patient to Make an Appointment

But to treat a Down syndrome patient, you have to see them. That is where the education piece is so critical. In many of our communities, we have Early Intervention services for babies born prematurely or with medical concerns. This can be the place where an initial referral can originate. When an EI therapist understands the importance of the feet and biomechanics in the development of any child, she/he can screen for this. With early intervention, Down syndrome patients can have a better outcome in meeting their developmental milestones and lessening their risks of Alzheimer’s and obesity.

In Summary

So what can you do to help? As podiatrists, we are in the unique position of being trusted medical professionals of the lower extremity and its effects on the kinetic chain. This gives us the ability to get out and educate, educate, educate. Preparing the community of people who work with the Down syndrome patients is the key to getting these clients proper foot care early in life in order to allow them a better chance at a long, healthy, active existence. “Treatment of painful feet in patients with Down syndrome is imperative because foot pain leads to relative immobilization and immobile retarded adults do not remain long in the community.”9 My goal as a practitioner and someone who recognizes the progression of foot types is preventing pain by knowing how to deal with it before it happens, coupled with improving overall biomechanical strength and structure. No matter a child’s medical diagnosis, it is important to educate parents and their children what their “foot type” is, and what that may bring them during their adult years. Please feel free to reference my websites www.nolaro24.com and http://www.decaropodiatry.com for additional information regarding my practice and its methodologies.

References
1. Leshin, L. (2003). DS Musculoskeletal Conditions in Down Syndrome.
In Musculoskeletal Disorders in Down Syndrome. Retrieved
May 25, 2012, from www.ds-health.com/ortho.htm.
2 Rogers, C.: Carers Knowledge of common foot problems associated
with people with Down’s Syndrome. University College
Northampton, 2002.
3 Aprin H, Zink WP, Hall JE: Management of dislocation of the hip
in Down syndrome. J Pediatr Orthop 5: 428, 1985.
4 Benoit, E.: Podiatry and mental retardation: The podiatrist’s
role. J.A.P.A., 55: 434, 1965.
5 Young, E. (March 22, 2002). New Scientist. Down’s syndrome
lifespan doubles. Retrieved June 5, 2012, from www.newscientist.
com/article/dn2073-downs -syndrome-lifespan-doubles.html.
6 Eyman RK, Amer J Mental Retard, 95(6): 603-612, 1991.
7 Head, D., Exercise Engagement as a Moderator of the Effects of
APOE Genotype on Amyloid Deposition, January 9, 2012.
8 Selby-Silverstein, L.: The effect of foot orthoses on standing foot
posture and gait of young children with Down Syndrome. NeuroRehabilitation
16 (2001) 183-193.
9 Diamond, L.S. and Lynne, D. et al., Orthopedic disorders in
patients with Down’s syndrome, The Orthopedic Clinics of North
America 12(1) (1981), 57-71.