Holiday Survival Guide for Families & Individuals Navigating PANS/PANDAS

At ASPIRE, the Alliance to Solve PANS & Immune-Related Encephalopathies, we support families facing PANS/PANDAS throughout every stage of life. This holiday guide shares the practical strategies families have told us are most helpful, grounded in compassion, flexibility, and real-life experience.

Holiday Survival Guide for Families & Individuals Navigating PANS/PANDAS

The holiday season can be magical, but for families and individuals managing PANS or PANDAS, it often brings real challenges. Unpredictable symptoms like anxiety, aggression, sensory issues, regression, or restrictive eating, along with more germs, can make this time overwhelming.

This guide gives practical tips and encouragement to help you approach the holidays with your child’s or your unique needs in mind. Not every suggestion will work for every family or person. The goal isn’t perfection; it’s meeting yourself and your loved ones where they are.

Holidays can bring extra stress. There are gatherings, meals to plan, and expectations to manage. Families living with PANS/PANDAS often worry: Will my child or I be able to handle this? How might symptoms show up? How will others respond?

It can help to step back and focus on what really matters. Limit social media or take a break, since what you see online rarely reflects real life. Be careful about where you spend your time and energy. Trying to do too much or comparing yourself to others can make it harder to be present. Remember, the holidays don’t have to be perfect to be meaningful.

If this resonates with you, you are not alone.

1. Do Not Over-Schedule

It can be tempting to fit in every visit, gathering, and tradition. For many families and individuals affected by PANS/PANDAS, this quickly becomes too much.

One good experience is often better than several stressful ones. If you or your or your child needs to be on their best behavior for an event, plan some low-stress time before and after. Quiet time to decompress isn’t a luxury; it’s often needed.

2. Prioritize a Germ‑Safe Environment

Infections can trigger PANS/PANDAS flares, so preventing illness is especially important during the holidays. Everyone needs a different level of caution, so talk with your PANS provider about what’s best for you and your family.

Some strategies may include:

• Avoid crowded gatherings when possible, especially during peak cold and flu season.
• Keep hand sanitizer or disinfectant wipes on hand for times when regular handwashing isn’t easy.
• Talk with hosts ahead of time about your child’s needs and ways to reduce germ exposure.

3. Establish a Safe Retreat Space

Having a set place to relax can really help. Even a few minutes in a quiet spot can make things easier.

• At home, set up a cozy spot with familiar, calming items, such as a weighted blanket or noise-canceling headphones.
• When visiting others, bring something familiar, a favorite pillow, stuffed animal, or comfort item.
• Let hosts know ahead of time that you or your child may need breaks and ask where they can go if they need space.
• Give yourself or your child permission to stay in a place that feels safe as long as needed, even if that means missing most or all of the event.

4. Have an Exit Strategy

Meltdowns, anxiety, and overwhelming feelings can happen even with the best planning.

If you can, plan ahead for an early exit. Some families take two cars so that some can stay and others can go.

Knowing you can leave without disrupting the rest of the family or party can lower stress for you and everyone else.

5. Focus on Staying Present

The holidays can be busy and distracting, making it hard to stay calm. So when holiday stress feels overwhelming, try simple ways to decompress. Simple grounding techniques can help caregivers and those with PANS/PANDAS stay steady in the moment. Even a few deep breaths can make a big difference. Focus on the present through mindful moments like drawing, cooking, or washing dishes, follow a short guided meditation online, or give yourself kindness and patience when things get tough.

Some simple techniques you can do almost anywhere include:

• Hold something hot or cold
• Plant both feet firmly on the ground and focus on the sensation
• Listen to music
• One-minute reset: breathe in for four counts, hold for four, exhale for four
• Gratitude check-in: name three things you are grateful for, making a new list each day
• Move your body: reach your arms to the sky, roll your shoulders, or tilt your neck

Taking care of yourself is part is not selfish. It’s okay to put your own needs first sometimes. We know it’s not always easy, but remember that just trying is a win.

6. Reduce Food‑Related Stress

New foods, unfamiliar places, and extra attention at mealtimes can be overwhelming, especially for those who have restrictive eating habits.

Helpful strategies may include:

• Bring foods you or your child is used to and feels safe eating.
• Prepare a dish you or your child likes that others may enjoy as well.
• Take the focus off food after the meal by clearing the table and moving on to other activities.
• You can ask family members to avoid weight, diet, or body‑focused talk. Even with good intentions, comments like “Aren’t you having dessert?” or “I’ll need to diet after this” can be triggering.
• Ask your therapist for other tips and strategies so you are better prepared.

Possible responses include:

• Changing the subject
• Using humor
• Saying, “I’d prefer we talk about something else”
• Letting your child know it is okay to walk away from conversations that feel uncomfortable

Explaining Restricted Eating to Hosts

If helpful, consider sharing the following guidance with hosts:

• Be respectful of eating differences. No one should be pressured to eat certain foods.
• Don’t draw attention to what someone is or isn’t eating.
• Avoid expressing disappointment or guilt around food.
• Don’t take it personally if the food you prepared isn’t eaten.
• Avoid shaming or questioning food choices.

7. Stick to Routines While Staying Flexible

• Keep regular medication and supplement schedules; pack extras if traveling.
• Maintain consistent sleep routines when possible, while allowing flexibility if overstimulation sets in.
• Frame temporary changes as special “holiday rules” to support predictability.
• Incorporate sensory or therapy‑based activities into holiday plans.
• Be willing to change plans in the moment if you or your child is struggling.
• Preparing meals in advance and relying on leftovers between major holidays can also reduce stress and conserve energy.

8. Prepare Family and Friends for Flexibility

Clear communication helps set expectations, even if it feels awkward at first. It may not always be easy, but it’s worth it.

• Share a simple explanation of PANS/PANDAS and what you or your child needs right now.
• Put comfort ahead of tradition (for example, waving instead of hugging)
• Remind loved ones that changes in mood or behavior aren’t personal.
• Ask for understanding if plans need to shift at the last minute.

Setting Boundaries

Sometimes the best way to protect you or your child, and your family’s well-being is to set simple, clear boundaries. Short, honest phrases are enough; you don’t need to overexplain. If a gathering feels unsafe or unwelcoming, it’s okay to say no. Setting boundaries takes practice. If others react poorly to your reasonable limits, that’s their issue, not yours. Boundaries help protect you, even if others don’t agree.

You can say things like:

• “I’d love to, but I need to rest.”
• “I can’t host this year, but I’d be happy to help in other ways.”
• “I think it’s best not to come over since you’ve been sick.”
• “I’m not feeling up to it right now.”
• “I have another obligation.”

9. Simplify Gifts and Activities

• Pre‑loosen ribbons or reduce tape for those who struggle with fine motor tasks
• Keep gift‑opening low‑key and limit noise or crowds.
• Focus on experiences that align with you or your child’s preferences, such as a quiet movie night or a comforting item.

10. Manage Sensory Overload

The sights, sounds, and smells of the holidays can be overwhelming.

• Dim the lights and lower the volume when you can
• Introduce decorations or music slowly instead of all at once
• Pair new sensory experiences with familiar, comforting things

11. Travel Smart

If you plan to travel, getting ready ahead of time can help lower stress.

• Pack a dedicated medical bag with medications, supplements, and any needed protocols
• Bring familiar snacks and drinks you or your child is comfortable with
• Use services like TSA Cares when it feels helpful
• Try to plan travel times around when you or your child tends to do best

12. Lean on Your Support Network

You don’t have to handle everything alone. Let others help when they offer.

• Ask a trusted friend or family member to help out during gatherings
• Take short breaks for yourself whenever you can, even if separation anxiety makes it tricky.
• Even five minutes counts.

13. Celebrate the Wins

Progress matters, even the small things. Every step forward counts.

• Notice and acknowledge your or your child’s effort and resilience
• Celebrate moments when you and they engage, show flexibility, or just enjoy the moment
• Remember: trying is a win.
• You might end the day by naming one thing that went well

Final Thoughts

The holidays might not look like they do in the movies, and that’s okay. With planning, flexibility, and support, you can still find moments of connection and meaning. Real life is more important than a perfect picture.

There’s no one right way to celebrate. What matters most is meeting your child’s needs, protecting your family’s well-being, and making space for the moments that matter most.