Atlanto-Axial Instability and Children with Down Syndrome

As therapists, we are always encouraging children to run, jump and play. There are times when physical activity could be dangerous to your child’s health, however, especially children with Down syndrome. Children with Down syndrome are at risk for developing a condition called Atlanto-Axial Instability (AAI). AAI is a condition in which the first and second bones of the neck have too much flexibility. These bones, called cervical vertebrae, can cause damage to the spinal cord when there is too much flexibility. 

How common is Atlanto-Axial Instability in children with Down syndrome?

Approximately 15% of children with Down syndrome have AAI and have no symptoms. Only 1-2% of children with AAI have symptoms.

What are the symptoms of Atlanto-Axial Instability?

Although physical symptoms of AAI are very rare, some symptoms that could indicate pressure on the spinal cord include:

▪ Neck pain

▪ Torticollis or tilting of the head and neck

▪ Loss of balance or changes in walking pattern

▪ Changes in sensation in the hands or feet

How do I know if my child has Atlanto-Axial Instability?
AAI is diagnosed through a series of neck X-rays. X-rays of the head and neck are taken from the side (lateral view), with the head bent forward (flexed), and with the head tilted backwards (extended). On X-ray, a space between the 1^st and 2^nd cervical vertebrae larger than 4.5 mm is positive for AAI.



Does my child need to have X-rays if they have no symptoms?

Previously it was recommended that all children with Down syndrome have X-rays taken during their preschool years (ages 3-5). Any child who wants to participate in sports should have X-rays prior to starting the sport as well, even if previous X-rays were negative. This will ensure that it is safe for your child to participate.  In 2011, the American Academy of Pediatrics released updated guidelines and the updated guidelines no longer recommend X-rays for all children with Down Syndrome.  The 2011 guidelines state "Children with Down syndrome are at increased risk of atlantoaxial instability. However, not until age 3 years will they have adequate vertebral mineralization and epiphyseal development for accurate radiographic evaluation of the cervical spine. Plain radiographs do not predict well which children are at increased risk of developing spine problems. Therefore, routine radiologic evaluation of the cervical spine in asymptomatic children no longer is recommended."

If my child is diagnosed with Atlanto-Axial Instability, are they restricted from physical activity?

Children with AAI can still participate in physical activity; however, they should avoid activities that put excess strain on the head and neck. Activities that should be avoided include:

▪ Gymnastics, tumbling and somersaulting

▪ Vigorous jumping/bouncing, such as trampoline activities

▪ Contact sports such as football, hockey and soccer

▪ Diving

Where can I find more information on Down syndrome or Atlanto-Axial Instability?

Your pediatrician and your child’s therapists are great resources for information. There are also several national and local agencies with excellent information, including:

▪ National Down Syndrome Society:

http://www.ndss.org/

▪ National Association for Down Syndrome:

http://www.nads.org/

▪ Down Syndrome Association of Houston:

http://www.dsah.net/

Sommer L. LaShomb, PT, DPT, PCS

Physical Therapist



Reasons for Discharging Patients from Therapy Services

As pediatric therapists, we treat many children who have disabilities or conditions that will affect them for the rest of their lives.  So why would we discharge a patient who has a life-long condition from therapy services?  This is a question that many parents and caregivers ask our therapists and our clinical directors, so we wanted to take some time to explain what the reasons are behind why we discharge patients from therapy.

1.       The child has met his/her goals:  As therapists, this is our ultimate goal!  We want every child that we work with to progress to the point where they no longer need our help.  When we do an initial evaluation, we establish individualized goals for each child and we focus our treatment on meeting and achieving those goals.  When your child meets his/her goals, it’s time for celebration and also time for graduation from therapy!  This can be bittersweet for both the families and the therapists at times.  Therapists can become like a part of the family, and it’s hard for us to say goodbye to patients that we’ve worked with.  But as the saying goes, all good things must come to an end!

2.       The child is functioning at a level that is appropriate for his/her age or diagnosis:  Therapists can’t “cure” children of any disability or condition.  What we can do is help a child reach what we call his/her “maximum functional potential”.  Maximum functional potential means that your child is functioning at a level that is safe and reasonable for them to complete their everyday activities given their disability or condition.  For example, not every child will have the ability to walk independently.  However, if a child is able to safely and independently walk with a walker at home, at school, and in the community, then they have reached their maximum functional potential for that skill.

3.       The child is not willing or able to actively participate in therapy:  The therapy relationship, like all relationships, requires the participation of both parties involved.  Children have to be capable of being an active participant in therapy in order to gain something from it.  Sometimes, children have behavioral issues or physical limitations that make it difficult or even impossible for them to participate in therapy.  When this is the case, we recommend the families address those issues first, before we attempt to provide therapy. 

4.       The child is not making progress in therapy:  In order for us to justify that what we are providing is helping the child, we have to be able to show progress.  As therapists, we understand that each child is different and will progress at different rates.  We’re not saying a child has to meet every goal every time we evaluate, but we do need to have documented evidence that the child is making progress towards his/her goals.  This is especially important for insurance reimbursement.  Insurance companies will not pay for therapy services for individuals if they do not show progress.

5.       The child no longer needs skilled therapy:  The services that we as therapists provide are considered skilled services.  Therapists have specialized degrees and are licensed by the state to provide therapy services, meaning that not anyone is able to perform the skills that a therapist does.  However, there are skills that do not have to be provided by a licensed therapist and can be taught to caregivers.  Skills like range of motion (ROM), therapeutic exercises, sensory integration techniques, etc. can all be taught to and performed by people who don’t have a license or a degree in therapy.  When a child just needs therapeutic interventions that are unskilled, the caregivers can provide those interventions and skilled therapy is no longer needed.

6.       The parents/caregivers do not follow through with therapy recommendations:  Therapy is just a small part of a child’s world, usually just a few hours a week.  So we need help from you, the parents and caregivers!  Caregivers are expected to work with their children outside of therapy on the same goals that we work on so that the child achieves something called carryover.  Carryover means that a child is able to perform a task not just in therapy, but anywhere they are asked to complete the task.  For example, a child may learn how to tie his/her shoe in Occupational Therapy, but if he/she can’t tie the shoe at home when the caregiver asks, outside of the therapy setting, then how will they be independent with their dressing skills?  When therapists give recommendations to caregivers and those recommendations aren’t followed, it can slow or even stop a child’s progress in therapy and if that is the case, we may need to discharge.

As pediatric therapists, our job is to make therapy fun for the child and we do our best to make sure that they are successful both in therapy and out in the real world.  Prior to discharging any patient, we look at all the factors affecting the child before we make a decision to discharge.  We hope this blog helps you have a better understanding of the reasons for discharge from therapy.