Tag Archives: down syndrome

How Physical Therapy Supports Children with Down Syndrome

By: Joanne Pygon, PT, MS, PCS

Physical therapy plays a crucial role in helping a child who is diagnosed with Down syndrome (DS) reach their highest potential.  What that therapy looks like through a child’s life changes as he/she transitions from newborn to teenager.  Hypotonia, weakness, cardiac and respiratory issues are some of the challenges a PT will address.

0 – 24 months:  The physical therapist (PT) is one of the first healthcare professionals to work with a parent and their child to help build a strong foundation of strength and movement.  Depending on the medical complications a child faces, the PT works regularly with the child to build strong muscles so he/she doesn’t develop compensation that can affect their abilities later.

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The parents or caregivers will have activities to work on daily to help their child reach gross motor milestones.  The child may need special braces for their feet to improve alignment so that muscles can maintain length to function efficiently.

Compression garments such as a SPIO, Benik or an abdominal binder, may be considered to aide postural alignment and respiratory function.  Aquatic therapy can be beneficial if a child enjoys the water.  This gives him/her an opportunity to be challenged in new and fun ways, while also building strong swimming skills and an enjoyment of water for future exercising.

2 years – 5 years:  During the preschool years physical therapy continues to address higher level gross motor skills.  It may be appropriate for a child to be involved in group therapy sessions where peers motivate each other, along with providing social and communication opportunities.

Easterseals has groups like Mighty Movers, Build Your Muscles, Build Your Brain (TAAP), Get in the Game and more that enhance a child’s gross-motor skills. Most children start in a school program upon turning 3 years old.  PT is provided in the school to address issues that interfere with academic success.  This might be enough therapy for a child or the parent may choose to continue private therapy depending on the child’s needs and goals.  If the child has orthotics (foot braces), then a PT should be following the child periodically to check for fit and continued need.  During this time, families can explore park district programs in their area, especially gymnastics classes or swimming in order to build balance, strength and coordination.

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5 – 10 years:  Throughout these years, a child involved in community-based programs could seek PT consultations.  Some children may enjoy a summer PT group to build strength and confidence such as our rock climbing group.  Biking can also be a great opportunity for fitness and socializing.  There are several “learn to bike” programs in the community and a PT can help a child develop this skill.  Many children become involved in swimming and this becomes their life long fitness.

Jake mom machine.jpgTeenage years:  Encourage physical fitness, which is important for any teenager or young adult. Hopefully as the child faces the challenges of being a teenager, they have confidence in their abilities and can continue to be a part of a sport community, like a swim team, running group, or special rec team.  The child may need to check in with their PT a bit more to update home programs, as growth may affect their posture.  While braces may not be needed anymore, foot inserts may be necessary to support his/her feet in the best possible position.

 

Most importantly, set high expectations and enjoy all the gifts children bring to families!

For more information on our Down Syndrome services, visit http://www.easterseals.com/dfv/our-programs/downsyndrome.html.  To get started or learn more, call us at 630.282.2022.

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Audiology Intervention for Children with Down Syndrome

By: Karyn Voels Malesevic, AuD, CCC-A, Manager of Audiology and Family Services

Children who have Down Syndrome can often have hearing loss, so a therapy center that also has an Audiology Department onsite can make coordinating care easier. Their hearing loss may range from permanent and needing hearing aids to having frequent middle ear infections and require consistent hearing tests.

According to the research article Understanding Hearing and Hearing Loss in Children with Down Syndrome, “Children with Down Syndrome are at a greater risk for permanent and transient hearing loss as compared with their typically developing peers. Long-term consequences of late or failed diagnosis, particularly in this population, can significantly affect quality of life, including school performance, speech and language, behavioral challenges, community engagement, and safety. Therefore, ongoing audiologic monitoring and otologic management is highly recommended for this group into adulthood.”
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Easterseals DuPage & Fox Valley has Audiologists in our Elgin and Villa Park centers who are experts at working with children that may have been considered “difficult to test” by other clinics.

We are able to fit hearing aids and make repairs and earmolds on children and adults through state programs such as Early lntervention, Medicaid, DSCC, ORS, and via private insurance or private pay options with very competitive pricing.

At Easterseals we work with the local educational Audiologists, who serve children with hearing loss that are in school. That work allows for cohesive coordination between school testing and any hearing aid or other specialized services that may be needed at an outside clinic.

We are also proud that we can continue to see the children in our care as they grow up into adulthood via our audiology clinics.

For more information on our hearing services, visit eastersealsdfvr.org/hearing.

 

Down Syndrome Enters a New Era

By: Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago

Editor’s Note: Through a partnership with the University of Chicago, developmental- behavioral pediatrician, Dr. Smith leads a new Neurodevelopmental Disability Clinic at Easter Seals DuPage & Fox Valley which provides support for children with Down Syndrome, ADHD or Autism, disabilities that may include complex medical and emotional issues.

Dr. Smith also leads Easter Seals DuPage & Fox Valley’s multi-disciplinary team including an occupational therapist, speech-language pathologist, developmental therapist, audiologist and parent liaison in the Medical Diagnostic Clinic. This clinic specializes in early diagnosis of young children.

Current Processes Are Not Working

Individuals with Down syndrome (DS) are living longer and healthier lives than ever.  There is consensus that complete information needs to be offered to all parents of children with Down syndrome (both pre- and postnatal) regarding the current experiences, health outcomes, lifespans, and quality of life for individuals with DS.  DS represents a dramatic “success story” and the lives of individuals with Down syndrome are improving in every way measurable.  Unfortunately, this good news is too often not being shared with new and expectant families.  Doctors are not prepared for this task and parents report frustration with the process.

Maggie_1.jpgOn the Cusp of Potentially “Game Changing” Therapies

In addition to the dramatic changes that have already occurred, DS as a clinical and research arena is on the cusp of developing even newer therapies that have the potential to improve cognitive outcomes.  Multiple research teams have protocols already enrolling study subjects.  For example, the team at the Jerome Lejeune Institute in Paris has an active study underway  that employs a combination of folic acid and thyroid hormone, targeting infants and primarily measuring cognitive performance during and after therapy.  Their preliminary work has shown significant promise and preliminary results might be released later this year.  Because of their early successes, there are ongoing efforts to mount a similar study here in the United States.  The NIH has recognized this new era and has launched an international registry (see https://dsconnect.nih.gov ).  However, this “breaking news” has not been widely disseminated.  Many worry that recruitment to these studies could be diminished due to the lack of awareness by primary care providers and the general public, which would slow the progress of the studies.

01_Lucas_Vasquez.jpgA Growing Number of States Have Addressed the Issue: Including Illinois

Because of the lack of general knowledge of both the dramatic improvements in the lives of individuals with DS and the emerging clinical trials in DS, a coalition lead (of course) by family support organizations has emerged.  They have initiated a new “information rights” movement that includes clinicians, policymakers, legislators, and researchers that has worked to enact new state laws addressing the problem of misinformation.  The first to successfully pass legislation was Massachusetts: in 2012, a coalition helped to pass a state law, mandating that clinicians provide accurate information and Referral to parent support organizations.  Most recently, Illinois, passed unanimous legislation in 2015, which proves that this is truly a bipartisan issue.

To learn more about our specialty clinics including the Medical Diagnostic Clinic, visit eastersealsdfvr.org.