ASPIRE sat down with Michelle Newby, BHSc(OT), MSc, to discuss how Occupational Therapy is helpful for PANS/PANDAS patients and to encourage everyone to enroll in her study, Occupational Performance Patterns in Children with PANS/PANDAS.
Michelle Newby BHSc(OT), MSc, is a PhD Candidate at the University of Newcastle, NSW, Australia. She is also an Occupational Therapist and the Director of Stepping Stones Therapy for Children in Newcastle, NSW, Australia
Gabriella: April is Occupational Therapy (OT) month, so I thought it would be the perfect occasion to talk to Shell about why adding OT to the mix of healing approaches for PANS/PANDAS can be of benefit. On a personal note, one of my kids gets OT at school, and by working with the therapist, we have learned some strategies to use at home for both kids. These strategies really can help calm him down and be more at ease. The OT has also worked on breaking down many life skills into learnable sections.
Michelle, welcome to ASPIRE, and thank you so much for taking the time to talk to us today about OT and your study. So let’s start by talking about OT and conclude with information regarding your study, which we highly recommend all families that fit the requirements do enroll in it. It is such important work and won’t take much of the family’s time.
Occupational Therapy for PANS/PANDAS
Occupational therapists are health professionals who work to maximize a person’s independence and participation in their life, and in the case of children, in a nutshell, we work to help them achieve their potential. Occupational Therapists are able to assess a child’s level of performance and independence and offer treatment where there is a disruption. Treatment might include skill training, individualized accommodations, or task adaptation, depending on what is appropriate for that individual child. Children with PANS/ PANDAS (PP) can struggle with different aspects of independence and participation, depending upon whether they are in a flare or not.
Sensory Tools for PANS/PANDAS
We know that many children with PANS/PANDAS can experience sensory changes during flares, and some of these changes can even stay with the child once the flare has subsided. Differences in sensory processing can change the way that children experience the world. For example, the feeling of seams or tags in clothing may suddenly become extremely irritating to a child experiencing a PP flare. This may cause behavioural outbursts or refusal to wear clothes for some children. There are many other types of sensory challenges that children with PP may experience, including disturbances in the way they experience taste, smell, sound, visual, movement, and other touch sensations.
Occupational Therapists can work with these children and their parents or caregivers to determine what their individual sensory needs are at that particular time, and develop a special program of sensory activities that the child can use throughout the day to regulate their sensory systems. This special program is called a Sensory Diet, and can help children to stay calmer and more in control of their body throughout the day.
Environmental Modification for PANS/PANDAS
From a sensory point of view, Occupational Therapists can make recommendations on how to modify the home environment to ensure that it best suits the child’s individual sensory needs. For example, this may include making recommendations about the lighting being used within the home if the child has visual sensitivities.
If a child is experiencing significant fatigue, pain or motor control challenges due to a PP flare, then an Occupational Therapist may make recommendations about different equipment or environmental modifications to help the child conserve their energy or to ensure their safety when moving around the home and performing daily activities.
Occupational Therapy and Stress Management for PANS/PANDAS
Occupational Therapists can help support well being and stress management in many different ways. They are able to work with the child and family to uncover potentially stressful triggers in their day. They can then develop a plan for minimizing those triggers or building strategies to help the child better cope with those stressors. Strategies might include specific sensory activities, mindfulness (e.g., awareness of breath), and modifying the task to minimize the stressful parts. Occupational Therapists can also support the child to understand how stress feels in their body and support the child to find effective calming strategies that can be used to prevent becoming overwhelmed by stress. This is called self-regulation training.
Top 5 Occupational Therapy Interventions/Accommodations for PANS/PANDAS
- Sensory diet/ sensory calming strategies
- Self-regulation training
- Handwriting remediation for residual difficulties following a flare; and handwriting accommodations during a flare
- Feeding therapy for residual food restriction following a flare
- Strategies to support focused attention
OT Goals Change During Flares and Between Flares Absolutely! During flares, it’s often really difficult for children with PP to relearn many of the skills that are impacted by the flare. This means that when a child is unwell, the Occupational Therapist will work to adapt or provide accommodations for activities that are more difficult (e.g., recommending the use of a scribe if writing is too hard, or using a calculator if maths becomes difficult). Once the flare begins to subside, the therapist is then able to support the child to relearn any skills they may have lost during the flare. This might include handwriting therapy, feeding therapy, self-regulation training, etc.
Gabriella: Tell us about the PP research study you’re leading.
Michelle: I’m working with fellow Occupational Therapy researchers to study the impact that experiencing a PP flare has on a child’s participation in daily life activities. We know from other research and from our own clinical experience that PP flares make it difficult for children to participate in daily activities. However, this has not been systematically measured. In this project, we are using standardized assessment tools, which will allow us to record each child’s participation more precisely, and compare it to other children in the same age group. We are looking for parents and caregivers of PANS/PANDAS diagnosed patients who are between ages 5 and 12 years of age and have had a flare in the past six months. They can live in Australia, UK, USA, Canada, Ireland or New Zealand.
Gabriella: Is it just a single questionnaire, or do you track patients over time?
Michelle: We are asking caregivers to complete a series of questionnaires at two different time points. Once when their child is experiencing a PP flare and then again when they have recovered from the flare.
Gabriella: What do the questionnaires include?
Michelle: The questionnaires we are using include:
- A short questionnaire about you and your child: This will include questions about the caregivers’ background and current situation, as well as questions about the child’s diagnosis.
- The Vineland Adaptive Behaviour Scale: This will include questions about the child’s communication, daily living skills, and socialization skills.
- The Sensory Processing Measure (Home form): This will include questions about the child’s responses to sensory stimulation.
- Caregivers will be sent an email every 4 weeks with a link to a short online survey to help us understand if their child has had a flare in the past month or not. The assessment forms included in this study are commonly used by Occupational Therapists to assess a child’s sensory responses to and performance in daily tasks.
Gabriella: How long will it take to participate?
Michelle: The questionnaires should take no more than 60 minutes to complete at each of the two-time points.
Gabriella: How will the information collected in this study be used?
Michelle: Findings from this study will be used to inform Occupational Therapists and other health professionals about PANS/PANDAS, and help guide their assessment and treatment methods. We plan to inform health professionals of our findings by publishing papers in scientific journals and in professional presentations. The results will also be reported in my PhD thesis at the University of Newcastle, NSW, Australia.
All information collected will be securely stored. Information collected will be de-identified to protect privacy.
Gabriella: We have a permanent page with more information on How to Enroll in this study on Occupational Performance Patterns in Children with PANS/PANDAS and people can contact you directly.
Michelle: You can read our Participant Information Form by clicking on this link. You can also email me directly on email@example.com. I’m really happy to answer any questions you have about the study.
Michelle Newby BHSc(OT), MSc
PhD Candidate, University of Newcastle, NSW, Australia
Occupational Therapist & Director, Stepping Stones Therapy for Children, Newcastle, NSW, Australia
Gabriella: Thank you so much for this important work. We urge everyone to take the time to check out the requirements and enroll if you can. I looked over the information, and it would not take too much time or effort to participate. It is so important to enroll in studies such as this in order to keep moving the data forward. This is our community; we need all hands on deck to improve the lives of those affected by PANS/PANDAS.