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Multidisciplinary clinic for arthrogryposis multiplex congenita (AMC)

Multidisciplinary clinic for arthrogryposis multiplex congenita (AMC)

What is AMC?

AMC is a term used to describe tight joints (contractures), present at birth, in more than two body parts. If your child has AMC, we offer an interdisciplinary team approach to care at Shriners Hospitals for Children — Canada. The Canada Shriners Hospital is located in Montreal, Quebec, and is a specialized orthopaedic hospital for children. Our team includes many different health care professionals to meet the needs of your child and family. Our goal is to provide coordinated family-centered care to children with AMC from birth to age 21, in one setting. This page provides information on the multidisciplinary clinic.

Referral process

Once a medical referral is received, a doctor will determine how quickly your child should be evaluated, and will assign your child to a specialist, according to the expertise required. In some cases, more information is needed to gain a better understanding of your child’s medical status and needs, and to ensure appropriate scheduling. If so, one of our experienced nurse care coordinators will contact you.

During the AMC clinic

You will meet and receive support from our multidisciplinary team. Depending on your child’s needs, your visitors may include orthopaedic surgeons, a geneticist, nurses, physical therapists, occupational therapists, social workers and other professionals as needed who will work closely together to provide comprehensive care. During the clinic visit, your child may undergo several tests to help us gain a better understanding of his or her condition. These tests could include blood analysis, ultrasound or x-ray, bone density measurements, photographs and videos. Your comprehensive visit will require a two day assessment time.

Day 1

  • Assessment by our rehabilitation team (physical and occupational therapy)
  • Visit with our social worker
  • Imaging: ultrasound/X-ray, bone density
  • Meeting with our research team – discuss options to participate
  • Photos and videos

Day 2

  • Upper limb surgeon
  • Lower limb surgeon
  • Spine surgeon
  • Geneticist
  • Presence of rehabilitation therapists

clinic staff member and infant patient

Multidisciplinary AMC clinic teams

Nursing care coordination

The nursing care coordinator manages your child’s care within the health care team. He/she implements the plan of care in partnership with the patient, the family and the multidisciplinary team in a timely manner and specific to the needs of your child and family.

The nursing care coordinator is available to provide:

  • support to your child and family
  • information about issues such as growth and development, health and well-being
  • information and education about your child’s health condition and treatment plan

Orthopaedics

Your child will be seen by an orthopaedic surgeon to evaluate the location and severity of contractures. The surgeon will propose a treatment plan in line with your child’s needs. This may include observation, bracing, casting, therapy and/or surgery. Depending on your child’s needs, a lower limb, upper limb and spine specialist may be involved with your child’s care.

Genetics

In order to gain a better understanding of the type of AMC your child has, a geneticist will meet with you and your child and suggest certain tests. The doctor will then communicate the results of these tests with you at a later time and provide consultation as needed.

Physical therapy

Our physical therapist will evaluate your child’s ability to perform various movements, such as rolling, crawling, standing and walking. The physical therapist will recommend stretching exercises, bracing and technical aids as needed. More intense physiotherapy treatment may be provided at a later date, depending on your child’s plan of care.

Occupational therapy

Our occupational therapist will evaluate your child’s ability to perform specific skills and activities to better understand your child’s ability to dress, feed, use the toilet, etc. The occupational therapist will then be able to recommend a home program, splints, and technical aids as needed. More intense occupational therapy treatment may be provided depending on your child’s plan of care.

Social work

Our social workers will educate your child and the family on strategies to adjust and manage living with a diagnosis of AMC. The social workers will speak with you about current support systems you have, and direct you to possible resources in your community. Our social workers’ aim is to help your child and family achieve and maintain a fulfilling and balanced life.

Clinical research

At Shriners Hospitals for Children — Canada, research efforts are underway to improve the care provided to children with AMC, and their families, and to identify the best treatment options in partnership with patients and families. If your child meets the criteria for one of our studies, we may ask you to consider participating in one of our research projects. Your child’s care will not be affected by your decision.

A video to understand a complex rare disease 

Below is a link to a short video about the rare disease called arthrogryposis. The video was produced by Sabrina Lusry-Shemie, a medical student at McGill University, and Noémi Dahan-Oliel, our clinical research investigator/coordinator. Clinicians, parents, and young people and adults living with arthrogryposis have been involved in the creation of this video, which will facilitate the understanding of this disease in the community. 

Watch video. 

Questions?

Nursing Care Coordinator
Jean-François Richard, RN, BScN, CPN(C)
Tel: 514-282-8537
Email

Rehabilitation Services Coordinator
Emily Lecker, MSc, OT
Tel: 514-282-8537
Email

Clinical Research Coordinator
Noémi Dahan-Oliel, Ph.D., OT
Tel: 514-842-4464, extension 2278
Email

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