Library Type: Condition

Traumatic Limb Loss

Prosthetic Technology

A traumatic limb loss could be a portion of a single finger to the complete loss of an arm or leg. Either way, the child and family will grieve the loss of the limb and the change in body image. Prosthetic rehabilitation can start as soon as the limb is healed. Commonly, a team of doctors, therapists, prosthetist, family, and the patient will work together to create the treatment plan. The goal is to return mobility and the child to as many activities as possible. It is important to maintain communication with your prosthetist and physician as your child grows. Follow up appointments can help to identify any issues that may impact function and comfort in the prosthesis. These issues include bone spurs and neuromas. It is not uncommon to require a revision surgery to remove a bone spur or stop limb growth in the limb to allow for more clearance for specific prosthetic feet. These procedures can provide improved long-term function. 

As a child continues to grow, he or she will be refit with a new prosthesis approximately once a year, depending on growth. Prosthetic technology options usually increase as a child moves through adolescence to being an adult. Prosthetic hands can provide more strength and dexterity. Prosthetic legs will provide improved means of shock absorption, stability, and mobility through increased availability to prosthetic components such as microprocessor-controlled hydraulic knees.  

Upper Limb Congenital Limb Difference

Treatment

Children and adults will wear multiple types of prosthetic arms throughout their life, and the most appropriate device will change with the child’s age, activity needs, and preferences. Upper limb differences typically follow one of the following treatment options.

  • No prosthesis – There are times that not wearing a prosthesis at all is the best option for your child.  
  • Passive prosthesis – A passive prosthesis is often used as a stepping stone to a prosthesis with grasping movement. Passive devices are lightweight and can stabilize activities like tummy time, sitting, and cruising. They can also allow your child to hold toys and other objects between their hand and the prosthesis. This type of prosthesis can be fit when your child is able to sit on their own.
  • Body-powered prosthesis – This type of prosthesis allows your child to grasp an object actively. A body-powered device uses a harness that crosses your child’s back to open or close the prosthetic hand or hook. Your child will move their shoulders to pull on the harness, which will move the hook or hand to grasp an object. This type of prosthesis tends to be easy to learn to use, lightweight, and durable. A body-powered prosthesis can be fit when your child is able to understand cause and effect generally around 2-3 years of age.  
  • Myoelectric prosthesis – A myoelectric prosthesis uses sensors built into the prosthesis to read your child’s muscle activity through the skin. When your child flexes one muscle, the hand or elbow of the prosthesis will move in one direction. Your child can flex a different muscle to move the prosthesis in the opposite direction.  This type of prosthesis might be best for a child that needs more grip strength than a body-powered prosthesis can provide. These devices have batteries and motors inside of them to create movement, which causes them to be heavier than other options. They are also not typically waterproof. A myoelectric prosthesis is often recommended when the child has outperformed the body-powered prosthesis or when a body-powered system is not a viable option. This prosthetic option is generally considered around 5 years of age or older. 
  • Hybrid prosthesis – This type of prosthesis is typically used for a patient with an above-the-elbow or higher limb difference, but uses the combined efforts of a body-powered and a myoelectric prosthesis. These tend to be lighter weight than a full myoelectric prosthesis and decrease how much strength and movement is needed compared to a fully body-powered prosthesis.   
  • Activity-specific prosthesis – This type of prosthesis is designed for your child to use for a recreational activity or sport. Instead of a hook or hand, your child may have an attachment that allows them to play an instrument, use sports equipment, or engage in other activities. Your child may only wear this type of prosthesis for specific activities.  

Trisomy 21

Down Syndrome

How Many Babies Are Born with Down Syndrome?

Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every 700 babies.1

Treatment

Down syndrome is a lifelong condition. Services early in life will often help babies and children with Down syndrome to improve their physical and intellectual abilities. Most of these services focus on helping children with Down syndrome develop to their full potential. These services include speech, occupational, and physical therapy, and they are typically offered through early intervention programs in each state. Children with Down syndrome may also need extra help or attention in school, although many children are included in regular classes.2

If your child has been diagnosed with Down Syndrome, your doctor may refer them to an orthotist, a specialist who provides devices that support the parts of the body when muscles are weak or bone and joints are aligned incorrectly. The orthotist will work with the doctor and the therapist to provide the best possible brace for your child.

Depending on your child’s level of weakness, they may be fit with a leg brace or a brace to support the spine. While leg braces called Supramalleolar Orthoses (SMOs) are the most common braces ordered for the management of kids with Down Syndrome, braces might be ordered that go up the leg to just below the knee called ankle-foot orthoses (AFOs), depending on the child’s needs.

1. Mai CT, Isenburg JL, Canfield MA, Meyer RE, Correa A, Alverson CJ, Lupo PJ, Riehle‐Colarusso T, Cho SJ, Aggarwal D, Kirby RS. National population‐based estimates for major birth defects, 2010–2014. Birth Defects Research. 2019; 111(18): 1420-1435. | 2. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html

Limb Differences Linked with Syndromes

Importance of Treatment

Although each of these syndromes has specific characteristics, the main concerns related to orthotics and prosthetics are similar: limb length differences, volume changes, and skin conditions. Without orthotic/prosthetic treatment, patients can suffer from a wide variety of increasing physical complications. This may include pain, decreased mobility, circulatory complications, and scoliosis due to a leg length discrepancy.

Orthotic Interventions:

  • Leg length discrepancies – differences in limb length can be addressed by shoe modifications.
  • Volume changes – edema and lymphatic drainage complications can be treated with compression garments; custom-made garments are often required.

Prosthetic Interventions:

  • Leg length discrepancies
    • A prosthesis will make up the difference in length between the two legs. Shoe lifts may no longer be needed.
  • Volume changes
    • A compression garment or shrinker may be used in conjunction with a prosthesis.
    • It is important to maintain a precisely fitting prosthetic socket. Socks can be used to adjust for limb volume fluctuations. An adjustable socket may also be helpful for some patients with volume changes.
  • Skin considerations
    • There are many options for the materials that are used against the skin in a prosthesis. This includes different types of silicone, gels, or thermoplastics used in the prosthesis to protect the skin. Collaborating with other healthcare professionals, such as dermatologists, may be helpful to develop a skincare treatment plan.

Communication and Support

Routine appointments with healthcare providers, including orthotic and prosthetic clinicians, can help maintain any patient’s quality of life. These appointments provide an opportunity to monitor growth or volume changes, make adjustments to the patient’s prosthesis or orthosis, and talk about future treatment plans.

Your healthcare team can provide resources to offer you options for emotional support as well. One example of support is AMPOWER, which is an online community with peer mentors who can assist in making peer connections, answer questions, and provide emotional support.

Muscular Dystrophy

Other types of muscular dystrophy, such as Myotonic, FSHD, Congenital, Becker, and Limb-Girdle, may present with similar symptoms but are generally slower progressing and may not show up until adulthood. These other types happen fairly equally in males and females.

Treatment

Orthoses (braces) may often be prescribed for individuals with muscular dystrophy. Their primary functions are to provide support for weakened muscles while walking and slow the muscle tightness that can occur at the ankles, knees, and hips. There are two types of orthotic devices most commonly prescribed to help those with muscular dystrophy:

  • Ankle-foot orthoses (AFOs) are either prefabricated or custom devices that extend from the foot, across the ankle, and end just before the knee. They are usually custom-made and very durable. Their main function is to facilitate walking and reduce pain during ambulation.
  • Knee-ankle-foot orthoses (KAFOs) are similar to AFOs but extend above the knee if a greater level of instability and weakness is present. They are also customized for each individual and typically made of plastic, metal, and/or carbon fiber.

1 www.mayoclinic.org>sumptoms-causes>syc-20375388 | 2 https://musculardystrophynews.com/orthotic-devices

Hypotonia

Signs and Symptoms

Infants with hypotonia have a floppy quality or “rag doll” appearance because their arms and legs hang by their sides and they have little or no head control. Other symptoms of hypotonia may include problems with mobility and posture, breathing and speech difficulties, ligament and joint laxity (looseness), and poor reflexes.

Hypotonia does not affect intellect. The opposite of hypotonia is hypertonia.

Diagnosis and Treatment

Treatment begins with a thorough evaluation, usually performed by a neurologist. This will include an assessment of motor and sensory skills, balance and coordination, mental status, reflexes, and functioning of the nerves. Diagnostic tests that may be helpful include a CT or MRI scan of the brain, an EMG to evaluate nerve and muscle function, or an EEG to measure electrical activity in the brain. 

Once a diagnosis has been made, the underlying condition is treated first, followed by therapy for the hypotonia. Physical therapy can improve motor control and overall body strength. Occupational therapy can help relearn ways to address daily activities. Speech-language therapy can help with breathing, speech, and swallowing difficulties. Therapy for infants and young children may also include sensory stimulation programs.1

If your child has been diagnosed with hypotonia, your doctor may refer them to an orthotist, a specialist who provides devices that support the parts of the body when muscles are weak or bone and joints are aligned incorrectly. The orthotist will work with the doctor and the therapist to provide the best possible brace (orthosis) for your child. 

Depending on your child’s level of hypotonia, they may be fitted with a leg brace or a brace to support the spine. While ankle-foot orthoses (AFOs) are the most common braces ordered for the management of kids with hypotonia, braces might be ordered for any joint in the body depending on the child’s needs.

1. https://www.ninds.nih.gov/Disorders/All-Disorders/hypotonia-Information-Page

Peripheral Neuropathy

Signs and Symptoms

Symptoms of neuropathy can range from mild to disabling but are rarely life-threatening. The symptoms depend on the type of nerve fibers affected and the severity of the damage. Symptoms may develop over days, weeks, or years. In some cases, the symptoms improve on their own and may not require advanced care. Unlike nerve cells in the brain and spinal cord, peripheral nerve cells continue to grow throughout life.

Treatment

An orthosis (brace) can improve function and help prevent complications. It is important to understand specifically what you hope to accomplish with a brace. Discuss your goals and any medical conditions, comfort concerns, and other functional problems with your orthotist.

Most often, orthoses include accommodative foot orthoses (FO) or ankle-foot orthoses (AFO). They generally reduce the amount of pressure to decrease the potential for injury in the affected limb.