PANS and Intuitive Eating must go hand in hand. My 8 year old son was recently diagnosed with PANS. A child who could eat en entire package of bacon if you let him or an entire personal gluten free pizza in one sitting suddenly could not eat a thing. Everything was “too chewy” or felt weird in his mouth. It started slowly and then BAM suddenly he was down to nothing but smoothies, apple sauce pouches, and yogurt. As of late we have added goldfish and cheez-its even though they have gluten (he is a gluten free child). At first I was wondering if he was looking for attention but when I saw him visibly sad and angry about being unable to eat his favorite things I knew something was off so we went to our amazing pediatrician.
What is PANS?
PANS is the acronym for Pediatric Acute-onset Neuropsychiatric Syndrome, a more recently defined disorder which encompasses the more familiar medical condition, PANDAS or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. PANDAS is now considered a subset of the broader classification, PANS. The National Institute of Mental Health (NIMH) acknowledged that PANS, a treatable autoimmune condition, could be triggered by any number of infections (other than strep), and that patients could be diagnosed with the condition even if the infectious trigger(s) was unknown.
“Parents will describe children with PANS as overcome by a ‘ferocious’ onset of obsessive thoughts, compulsive rituals and overwhelming fears. Clinicians should consider PANS when children or adolescents present with such acute-onset of OCD or eating restrictions in the absence of a clear link to strep.”
— Dr. Susan Swedo, NIMH
This has been a huge challenge to say the least. As a parent and in my own life, I like to promote balanced nutrition and intuitive eating. In my blog “Raising the Intuitive Eater” I discuss many strategies to encourage this philosophy to prevent children from being obsessed with food and diet and to help them feel free to choose what their body wants at any given time. Of course I still try to make sure he gets an ample amount of protein and vegetables in his diet and try to let him fill in the rest. As a parent it is our job to provide the general structure and let our kids fill in the rest as they learn to ask for what they want in the hopes that they will choose nutritious options most of the time. We all want our children to learn how to fuel properly and learn what their bodies need to survive and thrive, but we want them to learn to make these choices on their own eventually.
When his diet switched to smoothies, apple sauce, yogurt, and processed goldfish/cheez-it crackers due to this medical condition my intuitive eating values were put to the true test. At first I did not have a lot of patience. Trying to explain to an 8 year old who has no idea why this is happening that he still needs protein and vitamins and minerals to feel his best and to grow is like talking to a wall. I found myself reverting back to the “you need to eat and clean your plate philosophy” real quick and even telling him that he would get sick if he did not eat enough. Very easy to fall back into that when your motherly instinct is freaking out that your child is not getting proper nutrition. I was literally losing my mind and he witnessed my mommy tantrums in their finest moments.
After about a week of this stressful battle I realized I needed to let go of all control and let my child decide what he wanted to eat even if that meant cheez-its and ice cream for dinner. So challenging. Have I found ways to sneak protein in? Yes, we do almond milk and chocolate protein and his smoothies have protein as well but it has been very hard to accept that his dinner includes something processed like goldfish and cheez-its every single night. You learn to pick your battles and learn that right now it is out of your control.
Intuitive eating allows you to have freedom and allows you to let go of control but this has truly tested my intuitive eating philosophy and made me realize that I have to let him choose right now. That means giving up all control and letting him eat chocolate chips for dessert. It means only packing yogurt, goldfish, apple sauce pouches, and a drink for lunch, knowing that is not a complete meal. It means experimenting and sending protein bars to school just in case he might want to try one again. It means offering up anything that he might want to try again in the hopes that he will try it and not run out of the house and spit it in the back yard. It means possible judgement from other parents if they see what my child is eating on a regular basis. And, it means acting like it is no big deal in front of Liam’s face but crying behind closed doors when he is in bed at night or after he is dropped off at school. The stress is real and the struggle is real but I know this too shall pass and his happiness and sense of normalcy in his life is most important right now.
There comes a time when you have to accept what is right now. If goldfish is the new normal then that is the new normal. If grinding up his vitamins in a smoothie because he can’t stand the texture of his once favorite vitamins is the new normal then so be it. This is true intuitive eating here folks. Perspective is key. With any medical condition or diagnosis, eating and nutrition and any social norms surrounding food consumption, are out the door. I have to let him eat exactly what he wants and celebrate that with him even if it is a food that I know does not serve him well. After all, this is what I would want if I were going through something similar. So, thank you intuitive eating Gods, I hear you loud and clear and Liam appreciates it.
