Posts tagged with "cerebral palsy"

HEALTH (cerebral palsy) article illustration by Rita azar for 360 magazine

Improving Mobility for Kids with Cerebral Palsy: 5 Steps You Can Take

It takes a village to improve mobility in a kid diagnosed with severe cerebral palsy, but without a proper battle plan, some efforts may be all for naught while others may simply not yield the best results. In this post we have rounded up a five-step guide for getting you started. But first let’s see how cerebral palsy affects mobility in children.

How Cerebral Palsy Affects Mobility 

Mobility limitations experienced by children with cerebral palsy vary from patient to patient as there are no two diagnoses alike. And the diagnosis can be mild, moderate or severe. But all cerebral palsy patients have something in common: Their mobility has been affected and not for the better.

The level of impairment depends on the type of cerebral palsy and the severity of the diagnosis. There are four types of CP and just as many ways the condition manifests itself:

·         Spastic cerebral palsy is the most common type of CP, with 80% of CP patients being diagnosed with it. Patients with spastic CP have an issue with muscle spasticity and muscle stiffness and tightness, which means that they may experience uncontrolled movements, difficulty in walking, and coordination and posture issues. In severe cases, children with spastic CP cannot walk at all.

·         Dyskinetic cerebral palsy is the second most common type of CP, but just 5 to 6% of children with a CP diagnosis are affected by it. Patients diagnosed with dyskinetic CP may experience involuntary movements (including twisting), repeat movements, posture and coordination issues, varying muscle tone from too weak to excessively tight.

·         Ataxic cerebral palsy is the rarest form of CP. Patients affected by it have problems with coordination and may experience gait issues such as spreading their legs when walking, bad posture, and poor balance.  

·         Mixed cerebral palsy – the symptoms are a blend of the mobility limitations mentioned above.

5 Steps to Improve Mobility in Your Kid

Depending on the type of CP your child has been diagnosed with, you can take all or just some of the following steps. However, regardless of the severity of the condition, always consult with a professional before trying a new step with your kid. Early intervention is the key here for the best outcome, but uninformed decisions may negatively affect our kid’s prospects.

Step 1: Assessing Your Child’s Mobility

Each CP patient needs a personalized treatment plan for a successful recovery. But for that you will need to properly assess the young patient’s mobility issues. Things like type of CP, location of impairment, the extent of brain damage, severity of symptoms are all factors that need to be taken into consideration.

The following areas will need to be evaluated during the initial assessment:

·         Muscle tone

·         Reflexes

·         Coordination

·         Posture

·         Muscle control

·         Balance

·         Fine and gross motor functions

·         Ability to perform simple tasks like feeding oneself, getting dressed, using the bathroom, etc.

·         Diet, as some CP subtypes may be made worse by nutrient deficiencies even before the child was born.

Medical professionals may use state-of-the-art medical devices to assess all these aspects and issue a customized treatment plan. This plan will include methods to address mobility limitations in both legs and arms to ensure that the patient’s walking and mobility issues affecting the upper body are fully addressed.

A doctor may need to run several tests before he or she can come with a comprehensive assessment of a child’s mobility issues.

Step 2: Set Goals for Therapy

The lack of  goals for improving or restoring mobility may lead to wasted resources, frustration, and less-than-ideal outcomes. Your child’s diagnosis is unique so there are various ways of achieving the ultimate goal of a customized care plan, namely achieving the highest degree of independent living and quality of life the diagnosis permits.

Some of the goals you should keep in mind when tailoring a treatment plan with your child’s healthcare provider include improving/ restoring mobility, control the pain, boost current levels of independence, prevent CP-related complications such as post-impairment syndrome that usually appears later in life, optimize muscle tone, encourage self-care, and manage secondary symptoms such as seizures.

Step 3: Create a Personalized Care Plan

After determining your child’s mobility limitations and therapy’s goals, it is time to create a personalized medical care plan. Don’t expect your child’s primary care provider to come with a standard protocol as there isn’t one for cerebral palsy.

The plan should cover all bases when it comes to mobility issues and goals for therapy and must include both conventional and complementary therapies, along with alternative treatment options.

When drafting a plan include:

·         Therapy options (physical therapy, occupational therapy, massage therapy)

·         Medication (in some cases it might not be required)

·         Corrective surgery (if absolutely necessary)

·         Mobility aids, including walkers and eating aids

·         Home modifications (families affected by cerebral palsy often need to make modifications in their home to accommodate the child’s needs)

·         Strength training (this type of training has been proven very affective at improving mobility in CP patients)

·         Any other complementary and alternative treatment options that your kid’s doctor says they may work.

As the child grows, you will need to adjust the plan and consult with the kid’s educators and instructors on new ways to improve mobility depending on the educational settings’ limitations.

Step 4: Build a Dream Team of Experts

This step is easier said than done as you’ll likely find the best people to work with your child during your journey towards recovery. Make sure that you have the right primary care physician on board as he or she will be able to refer you to the right specialists for your kid’s needs.

You might have to need to work on several medical conditions stemming from the primary diagnosis at once. So, your medical team might need to include:

·         Physical therapist

·         Occupational therapist

·         Massage therapist

·         Developmental pediatrician

·         Neurologist

·         Orthopedic surgeon

·         Rehabilitation medicine specialist

·         Nutritionist

·         Orthotist

·         Counselor

·         Trainer

Step 5: Keep a Record

By keeping track of your child’s medical history, therapy sessions, medications, and other interventions, you’ll be able to tell what works and what doesn’t work to improve your little angel’s mobility.

What’s more, in some states, primary care physicians may be able to legally destroy some or all medical records after several years. You’ll also need a copy of medical records and detailed log of all interventions to share with new experts on the team, health insurers, lawyers, and authorities.

AMS Vans/Athlete Award Van

Atlanta-based AMS Vans teamed up with the Aimee Copeland Foundation and FODAC (Friends of Disabled Adults and Children) to present the keys for a wheelchair accessible minivan to the winner of an essay contest. The winner, Kendra Allen, is an Athens Tech college student whose essay detailed the challenges of growing up with cerebral palsy and her dream to help others with disabilities.

Allen’s prize is a 2012 Honda Odyssey wheelchair accessible minivan with $7,500 worth of reconditioning donated by AMS Vans, which will also provide free oil changes and tire rotation for as long as she owns the vehicle.

“I am so thankful for everyone who helped me get this minivan because it means I will finally be able to use my power wheelchair outside my home, making it so much easier to get to class at Athens Tech, see friends and eventually start my own business,” said Allen.

“AMS Vans is thrilled to help Kendra become more independent and we are inspired by her dedication to finish school and fulfill her dreams to create her own company to help others,” said Mark Shaughnessy, CEO of AMS Vans.

The minivan was donated by Aimee Copeland, a competitive swimmer and counselor who lost her hands, right foot and left leg from a flesh-eating bacterial infection in 2012. After receiving the vehicle as gift, she found new independence, started the Aimee Copeland foundation and became the official spokesperson for FODAC.

“This van changed my life and gave me freedom of mobility, and now I am paying it forward so that Kendra may have a better quality of life,” said Copeland. “We could not have done this without AMS Vans and FODAC, and I am grateful for their support.”

“As an advocate for those with disabilities we see first-hand how reliable transportation can change a person’s life by connecting them more readily to work and the community and we are excited to see Kendra succeed,” said Chris Brand, president and CEO of FODAC.

Allen’s essay was selected from 60-entries submitted to the contest that ran from January 7, 2019 to February 7, 2019. Her essay has been posted in full on the Aimee Copeland Foundation Blog.