Thinking a lot about how to keep children rooted in their unique identities apart from their illness. You are not your your fears, your infections. You are not PANS. Our brains can get sick but we are not that in our essence. Looking back at old photos I think of pre-illness and post-illness and how things have changed but I still believe the wounds and insults are still not our truest selves. There is still healing, there is still restoration, and there is always hope. Keep hoping for your babies because where we look, they will look. Keep them centered in their stories. They are not forgotten. #mentalhealth #pans #pandas

Stay grounded not just to your senses, but stay grounded in childhood. Many with PANS feel like their adolescent years were stolen from them due to this illness. It is definitely easy to be weighed down by treatments and days at home. But if you can remember what they loved doing as a kid. Even if it’s like going through stories or old photos. This helps reorient them to who they are, their identity. Dream of future dreams together. Stay grounded in childhood and don’t let this time slip away. Laugh, play when you can, rest. Eat ice cream. Call friends. The illness is not their identity 🤍

Depending on where you are on the PANS/PANDAS journey, which can be long and challenging, “meeting your panda where they are at in all realms” is still the best daily advice, especially with the ups and downs of physical and mental health needs. Be mindful of the daily habits and schedules you keep. What can they handle? Taking it slower and going faster if you can is so much better than speeding first and bottoming out.

Kids love metaphors and activating their creative brains can sometimes take out the limbic-brain emotional assault (from infections and the attacking immune system). Instead of constant symptom checking, I am thinking of it like a journey and I check in with my panda on what the terrain is like. There are going to be days that may feel like we’re stuck in the bamboo but breathing is progress, in our book. My teens have liked this metaphor on their okay days and rolled their eyes on the harder days, so then I have to pivot and again meet them where they are at.

It is attunement/mis-attunement, re-assessing and trying again: purely nervous system work. Match the energy and then gently re-direct. (This is really hard!) #pans #pandas #mentalhealth #lyme #dailylife

We are starting story re-telling healing therapy today. At least that is what we are calling it for now until I can think of a fancier name. This can be helpful to children and teens who have suffered chronic illness and because of that, have made their nervous vulnerable systems so sensitive. So many thoughts I have about this, but for now, thinking of when is the best time to start.,, watch for the next post.

Call our clinic to get the help and information you need about Pediatric Acute Neuropsychiatric Syndrome. 🤍

Our doctor and colleague has put out a smart app to track clinical symptoms to be sent right back to the provider. It’s an app called Cerewell. Check it out!

Some favorites for Lyme Awareness Month!