Author: Michelle Newby
If your child is living with PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), you’re likely familiar with the ups and downs that can come with these conditions. When your child experiences a flare, it can be difficult to know how best to support them. It’s important to seek medical support as your number one priority, as medical professionals can provide crucial treatments and interventions. However, occupational therapy can play a significant role in managing symptoms and supporting your child’s day-to-day functioning during these challenging times. In this blog post, we’ll explore practical tips for navigating these periods, focusing on reducing demands, accommodating their needs, and helping them regain their independence. If PANS PANDAS is new to you, you can learn more about these conditions here: PANS/ PANDAS | Stepping Stones
Understanding the Impact of a PANS/PANDAS Flare
During a PANS/PANDAS flare, everyday tasks that your child usually handles with ease can suddenly become overwhelming. Activities like going to school, brushing their teeth, showering, handwriting, solving maths problems, eating familiar foods, sleeping or tolerating the sensations of typical clothing might become significant challenges. It’s important to recognise that these difficulties are temporary, and with time and the right support, your child will likely regain these lost skills as the flare subsides.
Top Tips for Supporting Your Child During a PANS/PANDAS Flare
- Reduce Demands: During a flare, it’s crucial to lower expectations for tasks that have become challenging for your child. For example, if attending school full-time or eating foods with mixed textures are too difficult, it’s okay to take a step back and allow your child some breathing room. These challenges are part of the process, and your child’s abilities will likely improve as the flare diminishes.
- Accommodate Their Needs: Flexibility is essential during this time. It’s perfectly okay to make accommodations, whether that means adjusting their schedule, allowing extra breaks, or modifying tasks to make them more manageable. By accommodating their needs, you can help reduce the stress they’re experiencing, which can play a crucial role in preventing the flare from worsening.
- Communicate with Caregivers: Your child’s teachers, tutors, coaches, grandparents and other caregivers play a crucial role in their daily life. Make sure they are aware of your child’s fluctuating needs and the importance of being flexible during this period. Clear communication ensures that everyone involved understands the need to accommodate any areas of regression during a PANS/PANDAS flare.
- Seek Support from Occupational Therapists (OTs): Occupational therapists can be invaluable during a flare. They can offer strategies to modify tasks, recommend adaptive tools, and help create an environment that reduces stress. OTs can also guide you in supporting your child’s needs during this challenging time.
Navigating the Convalescence Stage in PANS/PANDAS
As your child begins to recover from the flare, they enter what is often referred to as the ‘convalescence’ stage. During this time, there’s a delicate balance between continuing to make accommodations and encouraging your child to regain their independence.
- Balance Accommodations with Independence: It’s important to strike the right balance during the convalescence stage. While your child may still need support, gradually reintroducing challenges is crucial for helping them regain their confidence and skills. The level of support should be adjusted based on how your child is feeling on any given day.
- Tailored Support from OTs: Occupational therapists can help you develop individualised plans that suit your child’s needs during this transitional period. They can work with you to reintroduce challenges in a way that doesn’t overwhelm your child, helping them rebuild their skills at a comfortable pace. Regular monitoring and adjustments will ensure that your child’s progress is steady and supportive.
Moving Towards Stability: The Back-to-Baseline Phase in PANS/ PANDAS
Once your child reaches a more stable state and is feeling better overall, it’s time to start raising expectations and encouraging them to resume their usual activities.
- Raise Expectations Gradually: In this phase, you can begin to encourage your child to take on the tasks and activities they engaged in before the last flare. However, it’s important to do this gradually, allowing them to rebuild their confidence and abilities at a comfortable pace.
- Address Residual Symptoms: Even after the flare has subsided, some residual symptoms may linger. Your child might still struggle with messy handwriting, increased hyperactivity, difficulties with attention, or pickiness with food (or other areas). Occupational therapists can help address these issues by providing targeted interventions and strategies to support your child’s continued progress.
- Focus on Maintenance and Prevention: As your child regains their previous level of functioning, it’s essential to focus on maintaining these gains and their confidence. OTs can work with you to develop strategies that ensure your child continues to thrive and manage any lingering challenges effectively.
Conclusion
Supporting your child through the ups and downs of PANS/PANDAS requires patience, understanding, and a flexible approach to their changing needs. By easing demands during flare-ups, balancing support with encouragement for independence during recovery, and gradually raising expectations as they stabilise, you can help your child navigate these challenging periods. Remember, you don’t have to do it alone—occupational therapists are an essential part of your child’s care team and can provide invaluable support at every stage, helping your child regain their skills and confidence.
