Understanding PANS and PANDAS
For Kids and Teens Who Have PANS/PANDAS
This article is for kids and teens living with PANS/PANDAS. It explains the conditions, what symptoms might look like, what you need, what’s okay to feel, and reminders that you’re not alone. This page is written just for kids and teens, and explained simply so everyone can understand. It doesn’t have all the answers, but hopefully we can help you get started!
What Are PANS and PANDAS?
PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are medical conditions where the immune system triggers sudden changes in mental and physical health. They’re neuroimmune disorders, meaning they affect both the brain and the immune system.
What PANS/PANDAS Might Look Like
Everyone with PANS/PANDAS is still the same person. The illness gets in the way, but it doesn’t replace who they are. The feelings caused by inflammation don’t define the person with PANS/PANDAS. These are some symptoms. They may not sound exactly like what you see or experience.
PANS PANDAS Symptoms
- Obsessional thoughts and compulsions (OCD) include many different thoughts and behaviors, not just handwashing, checking, needing things “just right,” perfectionism, or being messy.
- Checking: repeatedly checking things, needing reassurance, asking questions over and over
- Ordering: wanting objects or pictures lined up or arranged “just right”
- Perfectionism: wanting tasks done perfectly, repeating things until it feels right
- Contamination: being afraid of germs, dirt, or certain foods, so feeling a need to clean things repeatedly or avoid certain things and foods
- Only wanting to eat certain foods
- Feeling anxious about choking or vomiting
- Feeling too anxious to leave home or your parent
- Needing reassurance repeatedly, asking questions over and over
- Trouble focusing, impulsivity, or seeming like they suddenly have ADHD
- Losing school skills (like handwriting changes or suddenly struggling with math)
- Tics or movement changes. Tics can include movements and sounds.
- Difficulty falling or staying asleep
- Feeling like you have to pee a lot
- Acting younger than their age
- Emotional crashes, depression, or feeling sad
- Mood swings, crying, or feeling anger or defiant
What PANS/PANDAS is Not
- It’s Not a Choice: People with PANS/PANDAS don’t choose to have these symptoms.
- It’s Not Bad Behavior: The changes are due to the illness, not a reflection of who you are.
- It’s Not Acting Dramatic: The reactions and behaviors are genuine, not exaggerated or for attention.
- It’s Not Something You Can Just Snap Out Of: Recovering from PANS/PANDAS requires time and treatment, not only willpower.
Questions You May Have About PANS/PANDAS
- Is it contagious? No, you cannot catch PANS or PANDAS from someone else. But I might catch an infection from someone else that could make my symptoms worse.
- Does everyone with PANS/PANDAS look the same? No. Symptoms can look different for every person, but there can be similarities, too.
- Why can’t I just stop acting differently? We can’t always control it. Our brain has inflammation, which affects behavior, mood, and thinking.
- Why don’t I always look sick? Some illnesses are invisible. Our immune system is mixed up even when we look okay. But sometimes you can see tics and other difficulties controlling movement.
- Will I get better? Yes, but it doesn’t look the same for everyone. Some get better fast. Others take longer or have flares, meaning symptoms will come and go. Sometimes symptoms stay for a long time, but we keep working to make them better, too.
- Why do I seem fine one day and not the next? Symptoms can flare and fade because the immune system is confused and not working correctly.
- Why do behaviors change so fast? Changes in behavior can happen suddenly because signals in the brain get interrupted after a cold, sore throat, tick bite, or other infections. It doesn’t mean we are choosing these symptoms.
What Should You Know if You Have PANS/PANDAS
You didn’t cause this. Nothing you did made PANS/PANDAS happen, and you aren’t in trouble for the ways your brain and body feel right now. The following is not medical advice; it’s just basic supportive strategies.
- You’re not doing anything wrong. Your brain and immune system need support.
- Ask for help when you need it. Friends and adults want to help.
- Let your friends know what makes things easier. Quiet spaces, extra time, or someone to walk with.
- Take your time to rest. Flares happen. Symptoms can come and go. Listening to your body matters.
- It’s okay to take a break if something feels too loud, too stressful, or too overwhelming.
- Try some calming activities like going outside to feel the fresh air, taking a bath, or coloring in a coloring book. What else makes you feel calm?
- Ask for help when things feel hard. Sometimes this takes practice. We are used to being more independent, but it is okay to lean on our loved ones.
- You deserve care and understanding. Always. You aren’t a burden. You’re dealing with something real and difficult.
- Keep listening and trusting your family and your doctors. They’re working hard to understand what your body needs. Even when treatments feel slow or confusing, the adults helping you are on your side and want you to feel better.
- It’s normal to feel nervous about going to the doctor or new treatments. Doctors are there to help your brain and body feel better.
- Understand that sudden changes can make us have big feelings like worry, frustration, panic, sadness, or confusion. These feelings are expected, but they are just feelings. They can feel really strong, but they don’t always tell the truth. Sometimes OCD, anxiety, or stress can make your brain a “big fat liar,” saying things that aren’t real. It’s okay to have these feelings because they will pass, and you don’t have to believe everything they say.
- Remember, you are not alone. There are people who understand, care, and want to help you.
- Always know this: You are loved, and support is here for you even on tough days.
How the Immune System and Brain Get Confused
When the Immune System Has a “Glitch”
Your immune system is your body’s ‘protection team.’ Its job is to find germs and fight them. When everything works as it should, the germ is fought off, and the immune system rests. But sometimes, especially in PANS/PANDAS, the immune system gets the wrong message. Even after the germ (the infection) is gone, the ‘protection team’ keeps firing, staying active, and can be irritating and disruptive to parts of the brain that control feelings, movement, and thinking.
When this happens, a person may suddenly feel anxious, have tics, struggle to eat, or act differently. They don’t do these because they want to, but because their brain is inflamed. Sort of like when you twist your ankle, and it swells up, we can’t walk normally on that foot for a while. These changes can happen quickly, which can feel confusing or even scary for the person going through it and for the people around them.
How That “Glitch” Affects the Brain
When the immune system tries to fight an infection, it can accidentally fight parts of the brain that help with feelings, movement, and thinking. When that happens, the brain can get inflamed. This means part of the brain becomes irritated and swollen. This is kind of like when your skin gets red and puffy after a bug bite. Or think of it like when your ankle swells after you twist it. The ankle feels different, and you can’t move it the same way until it calms down.
A brain with inflammation works the same way. It makes certain thoughts, movements, or feelings harder to control. That’s why someone may suddenly seem anxious, angry, or overwhelmed. Their brain simply isn’t working the way it usually does while it’s inflamed. So, a person may act very differently than usual, even though they do not want to. The brain needs time and care to calm down.
Brain inflammation can:
- Make everyday things suddenly feel scary.
- Change what foods feel safe to eat.
- Cause tics or movement changes.
- Make someone feel angry or overwhelmed.
- Make it harder to learn, focus, or remember things.
These symptoms come from inflammation in the brain. PANS PANDAS is a real medical issue that needs real medical care.
What You Can Ask Your Friend or Sibling to Do for You
Having PANS/PANDAS can make things feel confusing or overwhelming sometimes — for you and for the people who care about you. It’s okay to ask for help. It’s okay to tell people what you need. Your friends and siblings often want to support you; they just may not know how yet.
Here are things you can ask for:
- “Please be patient with me.”
My symptoms can change fast. I’m not doing it on purpose, and I need time. - “Please believe me.”
Even if you can’t see what’s happening in my brain, it’s real. - “Please invite and include me, even if I can’t always join in.”
Even if I can’t come or join, it feels good to be included and thought of. - “Please don’t take it personally if I seem upset or distant.”
Anxiety, scary thoughts, or irritability are symptoms — not how I feel about you. - “Please remember I’m trying my best.”
Schoolwork, eating, or focusing — all of that can be extra hard for me sometimes. - “Please speak up for me if others don’t understand.”
You can tell people I’m dealing with a medical condition, not being rude or dramatic. - “Please be kind if I can’t do things the way I used to.”
I’m doing my best, even on the tough days. If I can’t eat certain foods, I act younger, or have other disruptive symptoms sometimes, it’s because my brain needs extra support. - “Please don’t say things like ‘just stop worrying’ or ‘you’re being dramatic.’”
I would if I could. Those comments make it harder. I need understanding, not pressure. - “Please remind me you still want to be my friend.”
That helps more than you know. Knowing you care makes the hard moments feel a little less scary.
How is PANS/PANDAS Treated?
Sometimes PANS/PANDAS affects more than just the person who’s sick. It can change how the whole family feels and how the day goes. It’s normal for these changes to feel confusing or even upsetting at times.
Treatment can include:
- Treating infections
- Reducing inflammation
- Supporting the immune system
- Supporting mental health
- School support plans when symptoms affect learning
Doctors, therapists, and teachers are helpers on your team. They’re there to explain things, answer questions, and help your body and brain calm down. Sometimes a sibling may get help and support from a therapist, too. That is nothing to be afraid of. It just means they also need support!
Healing takes time, and it doesn’t always move in a straight line. Sometimes symptoms improve; sometimes they return (called flares). Think of it like riding waves that rise and fall. Just as waves predictably come and go, flares can follow a similar pattern. That’s normal, and with the right help, these flares get easier to manage.
What Helps Someone with PANS/PANDAS Day-to-Day
- Having routines
- Getting enough rest
- Calming activities (like coloring, listening to music, or going outside)
- Asking for help when things feel hard
- Following instructions from doctors and therapists can help your brain and body heal faster. We know it can feel like a lot, but it really helps your brain and body get better.
Why Knowing About PANS/PANDAS Matters
PANS/PANDAS can be confusing for everyone involved. Sudden changes can make us have big feelings like worry, frustration, sadness, or confusion. That’s normal.
Even when things feel tough, families and friends can grow stronger as they learn more, support each other, and find new routines that help everyone feel safer and more connected.
There may be moments when things improve and moments when symptoms return. This up‑and‑down pattern is part of the condition, and it doesn’t mean anyone is doing anything wrong.
The good news is that families, friends, teachers, and medical professionals can work together as a team. Support, understanding, and good medical care help kids and teens feel safer and more confident as they heal.
Knowing the signs helps you understand what’s happening to you, a friend, or a sibling. Please remember that help exists and you’re not alone.
Learn More!
If you want to learn more or need support, ASPIRE, the Alliance to Solve PANS & Immune-Related Encephalopathies, is here to help. Consider sharing one new fact about PANS or PANDAS with a friend or family member today. By spreading awareness, you can make a difference in how these conditions are understood and supported.
Understanding PANS and PANDAS: For Friends and Siblings is similar to this article but adapted for you to share with friends and siblings.
We wrote this article for families navigating disbelief and misunderstanding: When the People You Love Don’t Believe PANS Is Real.
Gabriella True
