PANS and PANDAS: In Our Own Words

serves as a platform for children, teens, and adults to share their personal experiences of living with PANS, PANDAS, or other neuroimmune disorders.

Living With Neuroimmune Conditions: Perspectives from Young Adults

Recorded August 17, 2023

A one hour webinar open to clinicians, patients, and families hosted by Eileen Devine, LCSW. During this webinar members of our Community Advisory Board will share how neuroimmune conditions have impacted them, what their symptoms and recovery looked like, and how they are living with these conditions as adults. They will also explain what kind of support was helpful to them to give more insight to caregivers of neuroimmune patients.

Eileen Devine, LCSW

Therapist

“The best message I have for anyone of any age that has PANS or PANDAS” by Nicole, 21 years old with PANS.

I have had PANS for 12 years. I was diagnosed around age 9 and am now 21 years old. The best message I have for anyone of any age that has PANDAS or PANS is that you’re gonna have good days and bad days. You’re gonna have days where you feel like there is no light at the end of the tunnel. I’ve been there and I’m sure many like me have too.

But sometimes the darkest times bring out what’s most important to us. In my fight with PANS, I’ve grown closer with my family and discovered a love for art I never knew I had. My interest in art grew and grew. When I flare it’s the only thing I can do that still comes out good in my eyes. A few years ago I started my own art studio, taking small custom orders and making custom portraits for family members. My drawings are unique and people began to request more and more.

What I’m trying to get at is no mater how dark things may get or how bad things seem, find that thing to keep you going. Art is and will be that thing for me. I received an offer to design a logo for a company in LA, I have a couple commissions and I’m even in the process of setting up my own website. Reach for the stars guys! And never ever give up because there is always something that you can keep fighting for. If you want to see my art my Instagram is @blaze.twilight.studios

What it is like to have PANDAS. Written by 8 year old, Gia

It’s hard to concentrate in school, I don’t like getting shots or IVs. Sometimes, I dont like wearing certain clothes. I won’t let anyone touch my hair except my dad. I have to go to alot of therapy, I’m allergic to alot of food ( it’s hard to find certain snacks ). I wish I could have Doritos!

Sometimes I get mad. I have to go get shots every month but at least I have fun & play games when we are out of town. I have had PANDAS since I was 5, now I’m 8 yrs old & I’m starting to feel better.

Glory's watercolor painting of a red dragon.
GLORY: Dragon in Chains

Glory’s Parent: Glory is 9 and has had PANS misdiagnosed for 6 years (Autism/Tourette’s). She has been diagnosed correctly now for one year, and no longer is diagnosed Autism or Tourettes – just PANS.

Glory: Having PANS is very stressful. I can’t live normally. My legs give out and I need a wheel chair. I have a lot of tics and anxiety. Even sometimes my closest friends don’t understand and make me feel like they don’t believe me or that i’m faking it. Why would anyone fake this? It makes me feel like a dragon in chains. I just want to be normal. I want support. I want more people to know and care so I can get the right treatment (IVIG) and I shouldn’t have had to spend five years suffering and feeling like trash. People with disabilities shouldn’t feel like trash.

Charleigh smiling while holding a copy of her poem.
PANDAS poem

Charleigh’s Parent: My 11-year-old wrote a poem about her PANS/PANDAS experience. She presented it to me in her gifted classroom during her open house and it made us both sob. I had just spent hours earlier at the school meeting with the district psychologist on ways to help deal with this disease. I am proud of her for being so brave.

Inspired by Langston Hughes:

I’m on the top.
Then I fall to the bottom
I’m gonna try my best

One wrong move
Then I’ve lost my groove
I’m gonna try my best

I pray to god to have a better day
And let her be a great one
I’m gonna try my best

Some days are great
Some are bad
I’m gonna try my best

Two images of moving sand art pictures; the top photo is serene, with sand and oil separated. The bottom photo is turbulent, with sand and oil mixed up.
An analogy from Hudson

Hudson’s Parent: “At the very beginning of his 3rd flare (age 11, Jan 2019), he showed me this lava lamp type thing that sits on his desk and said: ‘When I don’t have PANDAS, this is how I feel (top image): clear-headed with a mind full of idea bubbles.’ Then he turned it upside down and explained, ‘When I have PANDAS, my head is full of frightening thoughts and worries, I can’t think straight and all my happy, good ideas are pushed way, way down.’ ”

What is PANDAS?

Written by Katie, an adult with PANDAS

I am an adult with PANDAS, Lyme, and 3 co-infections. I was diagnosed with PANDAS when I was 10. I am now 27 years old and my tick-borne infections were not found until I was 26 (so I was mis-diagnosed and mis-treated for psychiatric disorders for 16 years). I now own my own business and work as a tutor/teacher with children who have autism and PANDAS. My ability to form strong connections with these kids helps me feel that my experiences have purpose. I now write poetry and narratives to help me cope with my feelings/symptoms. I have been able to use writing to replace what was previously self-harm throughout my childhood.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. I’ve had to say that to so many doctors that I could say it ten times fast in my sleep. But what is PANDAS tonight, after being diagnosed with strep and sent into a flare?

PANDAS is me putting on pajama pants…

Then taking them off before they even get to my hips because the cotton fabric is too scratchy today. I put on a different pair, but I remember the last time I wore these pants… I wore them to sit on the couch downstairs. The pants have been washed, but the thought of the copious germs that could be covering these pants send them right back into the laundry basket.

I get a third pair of pants. I take those off too because the elastic in the waistband feels so tight, I think I might suffocate. I grab a fourth pair of pajama pants with sloths on them. They have a loose waistband and worn cotton. They are my favorite pair. They will do for now.

I get into bed but don’t feel tired… I never feel tired at night. I accidentally touch my sheets with my fingernail and cringe.

When was last time I washed my sheets? Are they dirty? My leg itches. I scratch it. Is it a rash? I itch harder. I pull up my pajama pants and see a red bump. Hives? Itch again.

Now my whole body itches, and I wonder if there are red bumps all over my body. Itching harder. Hives, scabies, bed bugs, measles, ticks, HOSPITAL, NEEDLES, DYING… “STOP!”

My eyes snap back to the room in front of me, and I see my mom yelling. I feel like I just woke up from a dream, I don’t know what she wants me to stop doing. “Look at your skin! You’re going to bleed. Stop itching!”

I look down for the first time. My arms, stomach, legs, neck; everything is raw, red and swollen. I want to stop… but now everything feels dirty. I can’t sleep on this pillow… or these sheets… or this blanket. I CAN’T WEAR THESE PAJAMAS.

I take everything off and run to the bathroom.

I try to refocus my eyes, but they are bouncing uncontrollably. I try to find something to ground me. The lights are too bright, the floor has too many square tiles, the counter top is not symmetrical, the corner has cat hair and I need to sweep, the sink has toothpaste and I need to wash it, but the ceiling is empty. The ceiling is calm.

I want to be standing calmly, just looking up at emptiness. Part of me feels like I am up there… weightless and floating. But down on the ground I feel my whole body convulsing. The deep, frantic vibrations start taking over my throat… that’s how I know my verbal tic has started.

In the shower, I’m still scratching. I try to scrub every inch of myself clean. I convince myself everything is okay because this water is new. But… this water is NOT new. How many times have these drops of water been somewhere awful? A toilet, a mud puddle… do I even know that this water is really clean? And that showerhead… the water is coming out of those little holes… are those clean? Did I clean those when I moved in? I might need to throw that showerhead away.

I feel my whole body convulse again and watch my hand slam into the wall. Everything inside of me is shaking, but on the outside my hand is steady as I watch it turn off the water. Every new thought rubs against the old thoughts until it bursts my brain into flames. This time it comes out of me as a loud scream. I get out of the shower, but now my sloth pajamas are ruined, too.

PANDAS is me putting on pajama pants…”

I am an adult with PANDAS, Lyme, and 3 co-infections. I was diagnosed with PANDAS when I was 10. I am now 27 years old and my tick-borne infections were not found until I was 26 (so I was mis-diagnosed and mis-treated for psychiatric disorders for 16 years). I now own my own business and work as a tutor/teacher with children who have autism and PANDAS. My ability to form strong connections with these kids helps me feel that my experiences have purpose. I now write poetry and narratives to help me cope with my feelings/symptoms. I have been able to use writing to replace what was previously self-harm throughout my childhood.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. I’ve had to say that to so many doctors that I could say it ten times fast in my sleep. But what is PANDAS tonight, after being diagnosed with strep and sent into a flare?

PANDAS is me putting on pajama pants…

Then taking them off before they even get to my hips because the cotton fabric is too scratchy today. I put on a different pair, but I remember the last time I wore these pants… I wore them to sit on the couch downstairs. The pants have been washed, but the thought of the copious germs that could be covering these pants send them right back into the laundry basket.

I get a third pair of pants. I take those off too because the elastic in the waistband feels so tight, I think I might suffocate. I grab a fourth pair of pajama pants with sloths on them. They have a loose waistband and worn cotton. They are my favorite pair. They will do for now.

I get into bed but don’t feel tired… I never feel tired at night. I accidentally touch my sheets with my fingernail and cringe.

When was last time I washed my sheets? Are they dirty? My leg itches. I scratch it. Is it a rash? I itch harder. I pull up my pajama pants and see a red bump. Hives? Itch again.

Now my whole body itches, and I wonder if there are red bumps all over my body. Itching harder. Hives, scabies, bed bugs, measles, ticks, HOSPITAL, NEEDLES, DYING… “STOP!”

My eyes snap back to the room in front of me, and I see my mom yelling. I feel like I just woke up from a dream, I don’t know what she wants me to stop doing. “Look at your skin! You’re going to bleed. Stop itching!”

I look down for the first time. My arms, stomach, legs, neck; everything is raw, red and swollen. I want to stop… but now everything feels dirty. I can’t sleep on this pillow… or these sheets… or this blanket. I CAN’T WEAR THESE PAJAMAS.

I take everything off and run to the bathroom.

I try to refocus my eyes, but they are bouncing uncontrollably. I try to find something to ground me. The lights are too bright, the floor has too many square tiles, the counter top is not symmetrical, the corner has cat hair and I need to sweep, the sink has toothpaste and I need to wash it, but the ceiling is empty. The ceiling is calm.

I want to be standing calmly, just looking up at emptiness. Part of me feels like I am up there… weightless and floating. But down on the ground I feel my whole body convulsing. The deep, frantic vibrations start taking over my throat… that’s how I know my verbal tic has started.

In the shower, I’m still scratching. I try to scrub every inch of myself clean. I convince myself everything is okay because this water is new. But… this water is NOT new. How many times have these drops of water been somewhere awful? A toilet, a mud puddle… do I even know that this water is really clean? And that showerhead… the water is coming out of those little holes… are those clean? Did I clean those when I moved in? I might need to throw that showerhead away.

I feel my whole body convulse again and watch my hand slam into the wall. Everything inside of me is shaking, but on the outside my hand is steady as I watch it turn off the water. Every new thought rubs against the old thoughts until it bursts my brain into flames. This time it comes out of me as a loud scream. I get out of the shower, but now my sloth pajamas are ruined, too.

PANDAS is me putting on pajama pants…”

Emma’s college essay

It was July 2012 and life as I knew it changed. I had just been at sleepaway camp in the woods in Michigan and as soon as I got home, I began having thoughts that made no sense. No sense to me and certainly no sense to my parents or anyone else that knew me. All of a sudden, I was afraid that anyone I touched or came near would die. I became so obsessed with the fear of hurting others that I began compulsively washing my hands until they bled. I couldn’t stop myself and this forced my parents to lock up all the soap in the house. I had always been a very obedient, compliant child but the irritational fear of hurting others unless I washed my hands was so strong, that I became very defiant and disobedient. It was so unlike me and quite frankly, terrifying for all of us. Not only had my behavior and thoughts radically changed but I had been a straight “A” student and I was no longer able to do simple math or process information the same way. In fact, I was a great artist and was quite advanced for my age, but I couldn’t even hold a pencil the right way or draw a straight line. So, when I say life changed as I knew it, I mean it. It was like something out of a horror movie. I was unrecognizable to myself and everyone that loved me.

I was diagnosed with PANS – Pediatric Acute-onset Neuropsychiatric Syndrome. It is characterized by sudden onset obsessive-compulsive disorder and several other symptoms including academic challenges. It completely made sense since it was all the things I was experiencing. It is caused by an abnormal immune response, where the body’s immune system creates inflammation in the brain, as a result of infections, toxins or other environmental factors. Being in the woods in Michigan, I had apparently been bitten by a tick and contracted Lyme disease. My immune system went crazy and began attacking my own brain.

Sadly, PANS isn’t well understood. It took months to get diagnosed and during that time I deteriorated more and more. I didn’t learn anything in school, I struggled to focus and my relationships with friends and family suffered. I was treated with antibiotics and lots of other medications without success. At one point, a doctor even suggested to my parents to have me placed in an inpatient facility. Like me, my parents don’t give up and they found the experts in this field and found the exact treatments I needed.

I am so thankful that my parents have always instilled in me a hard-working drive and ‘you can do anything’ attitude. It has taken a long time and I still struggle with focusing at times. Life is not perfect but with a ‘pick myself up by my bootstraps’ mindset, treatment with intravenous immunoglobulins and a community of people who love me and encourage me, I can proudly say I am known as the “Game Changer” on the soccer field and the overcomer in life.

Phoenix: The kid who is trying to get better

When I’m flaring, I feel like I’m in a dungeon and I can’t get out! It smells like smoke.

PANS sounds like a terrified mouse.

PANS looks like you’re in a blur.

If PANS had a taste it would be liverwurst.

I feel sad when I’m in a different place and I hate it. We’ve tried to find doctors who help kids like me. I’m happy when I’m healthy and sad when I’m not. I’m worried about my brother. I’m worried about myself. My fear is a clown and Pennywise videos.

I’m not bad when I’m in control. My mom gives me medicine, Advil and other pills to try to help me. I’m trying to get better! I love my family and my brother. I hate when I have to get blood work done. It’s so painful.

Oh, but I do have gratitude. I couldn’t be more grateful for my home… even though my room is messy!

Submissions

Artwork, stories, and articles that are accepted will be shared via social media and on our website. Submissions (800 words and less) are accepted continuously.
You’ll be notified if your work has been selected to be shared. First names only will be used for all 18 and under as well as adults by request.

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