Have you ever felt like your dinner table was more of a circus than the peaceful sit down meal you hoped for? If you’re a parent or caregiver of a child with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus Infections) you’re probably nodding your head.
Meals that were meant to be a happy time of connecting can quickly turn into a dreaded daily event. But I’m here to tell you that it doesn’t have to stay that way. While “perfect” mealtimes may be a little out of reach, this article dives into some tried and true strategies to improve the PANS & PANDAS mealtime dynamic.
Feeding Challenges in PANS & PANDAS
Before we get into “how to fix” mealtimes, it’s important to understand the common feeding challenges in children with PANS/PANDAS.
- Food-Related OCD Symptoms:
- Repetitive food choices
- Fear of foods
- Fear of germs/contamination
- Food refusal
- Tantrums
- Fear of choking
- Difficulty swallowing
- Weight loss/poor growth
- Avoidant Restrictive Food Intake Disorder (ARFID) , Pediatric Feeding Disorder (PFD) or Atypical Anorexia (AN) diagnoses
- Co-occurring Autoimmune Disorders that cause nutrient malabsorption, increased nutrient needs and growth challenges
- Celiac Disease
- Thyroid Disease
- Gut-Immune Problems
- Increased food sensitivities due to increased intestinal permeability (leaky gut)-these can trigger behavioral reactions
- Gut dysbiosis from the original triggering illness, frequent antibiotics or repetitive food choices
Understanding your child’s specific nutrition challenges can guide your focus as you learn about supportive feeding strategies.
Feeding Strategies for PANS & PANDAS
Nutrition for PANS & PANDAS does a deep dive into the best nutrients for your child. It can also help you to figure out which nutrition category your child falls into. Preventative strategies work best for kids who have a diagnosis and symptoms, but don’t have severe eating or growth concerns. Restorative strategies are better for kids with eating and or/growth restrictions, and therapeutic strategies are most helpful for families that have already tried a lot, but are looking for some extra ways to try to reduce symptoms. Supporting your child with good nutrition can improve their response to feeding strategies.
Most families find that behavioral and sensory strategies traditionally used for picky eating and ARFID also work well for their PANS/PANDAS kids. Helping Your Selective Eater, Food Chaining and High Protein Foods for Picky Eaters outline some of my best tips and tricks. Overall, improving your feeding strategies can make mealtimes less stressful.
Regardless of the strategies you try, please remember these 2 key points…
- Be sure that your child is getting the proper medical treatment for the underlying triggers and immune dysfunction. Without proper treatment, feeding therapy is less likely to help.
- “A nourished brain will respond better to diet expansion.” Getting the right lab testing and supplementing with the right nutrients will set you up for much better success.
Creating a Peaceful PANS/PANDAS Table
If you’ve read some of the above-mentioned articles, you’ve hopefully picked up a few tips based on your child’s unique situation. But a conversation about feeding wouldn’t be complete without addressing mealtime. As you know far too well, PANS/PANDAS mealtimes can be stressful. Rather than getting caught up in the emotional moment, focus on what you can control in the mealtime environment.
- Set your child up for success
- Create a calm eating environment (try some calm background music or dimming the lights).
- Be sure your child is seated in a supportive chair with a back and foot rest and that they are able to see their plate.
- Stay calm and reassuring-your child will feel your stress
- “I know you had a rough day, It’s ok if you don’t feel like eating, but you do need to stay at the table with us.”
- “If you really can’t handle staying at the table tonight, you can go lay on the couch or eat at the other table by yourself.”
- Keep expectations consistent and predictable
- We eat sitting down at the table
- We expect good manners
- We talk about the highs/lows of our days
- We read a short story at the end of our dinner
- Note: If dinner is on the couch or a free-for-all, this will make things harder
- Stay matter-of-fact rather than getting emotional
- Child: “Ew Yuck, I’m not eating this. This is disgusting.”
- Parent: “It’s ok if you don’t like the food, but we’re still going to use good manners when we eat it. Would you like to try again?”
- Child: “Ok, I’m not going to take very much.”
- Stay Unified
- Whether you’re a single family unit or split family, work on learning together to help your child.
- PANDAS puts a lot of stress on family relationships.
- Selective eating puts a lot of stress on family relationships.
- Together it’s a really challenging combo, so work hard on working together!
- Take the focus off of food when possible, focus on exercising non-food “muscles” like
- Good manners
- Bravery
- Curiosity
- Competition
- Put a fun twist on mealtime
- Try out my free Food Explorer Worksheet (with emoji taste test flash cards)
- Lighten the mood with humor
- Keep comfort foods in the weekly rotation, but…
- Don’t make them available every night
- Don’t offer them as a back up when they didn’t eat their dinner
- Note: If this is already your norm, this isn’t always easily undone, so you don’t necessarily want to go cold turkey or it can negatively impact their growth
- Be sure to consider the rest of the family
- Don’t automatically give your child a “free pass” due to their illness-sometimes you will be able to find “magic leverage” that will speak to your child
- Other times when your child’s brain is truly on fire, you just need to keep the rest of the family physically and emotionally safe. This may mean backing your child’s chair away from the table or sending them to another room.
- It’s a balance of being understanding, but also not letting it disrupt the whole family mealtime dynamic.
Setting the Table for Success
Hopefully after reading this you feel a little more optimistic about your next meal, but I know firsthand that it can feel overwhelming to know where to start. So what’s something you can do tonight that can actually change your mealtime dynamic?
- “Take off the guilty hat” (what you’re not doing) and “put on the empowered hat” (what you can do).
- Use these Questions to help you come up with 1 priority:
- What is your most frustrating mealtime behavior?
- What is the easiest thing to change right now?
- Use your answer(s) to take one step in the right direction of change.
Examples:
- If your child is currently being served a separate meal at a separate time from the rest of the family, you might take steps to get them to join you at the table (even if their plate looks different than everyone else’s).
- If your child is routinely tantruming at the table
- First consider if it’s a blood sugar imbalance from not eating a balanced afternoon snack.
- Next consider the foods they ate earlier in the day or the day before to see if they’re having a food sensitivity reaction to any food additives.
- If it seems like a true behavioral issue, work on coming up with a proactive reward/consequence system for mealtime behavior rather than reacting in the moment.
- If you find yourself losing your cool when your child doesn’t eat their dinner, focus on what you can control.
- Take the focus off of their eating performance and instead make it a time to connect and work on good manners.
- Use gentle phrases that emphasize eating to grow healthy and strong rather than pleading with them to try another bite.
- If you’re worried about your child’s lack of variety, work on adding in 1 new food at 1 meal this week.
- Let your child choose how much to put on their plate
- Encourage them to use neutral words to describe the food (even if they don’t eat it).
- If your child’s OCD, food aversion or mealtime behaviors are so severe, your priority might be finding a doctor (or a different doctor) who will treat the underlying infection/immune dysfunction.
Summing It Up
- Feeding challenges are very common in children with PANS & PANDAS and can make mealtimes more stressful.
- Using feeding strategies for picky eating can improve your mealtime dynamic.
- Depending on your child’s type and severity of symptoms, they may benefit from additional preventative, restorative or therapeutic strategies.
- PANS & PANDAS mealtimes can be improved with some simple non-food strategies.
- Focus on what you can control at the table, and remember to look out for your other family members too.
- Choose to be empowered by new information, and work on coming up with one next step to try at your dinner table.
Download my free Food Explorer Worksheet for some fun assistance on your journey. If you’re looking for more guided help, Food to Table Nutrition offers in person and virtual 1:1 consultations. We are in network with most major insurance companies.
This is not a substitute for medical advice nor is it a suggested treatment plan. If your child has any medical conditions, please consult your medical provider before implementing these suggestions.