Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.

I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.

After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.

If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.

Thank you to a special NEPANS family for creating these wonderful bracelets, handouts with a short version of their story, information on My Kid Is Not Crazy and NEPANS information sheets!   They have dropped them off at the following locations:

- The hospital that treated their daughter
- Primary care office
- Local walk in clinic where they get swabs at
- Children's schools with a reminder to try to schedule NEPANS to visit
- Mailed to most family and friends.
- Local Library
- Local CVS Pharmacy Staff

How fantastic is this! Below is the text printed on the handouts. Everyone can create a version of these handouts for themselves to hand out. You don't have to have the bracelets. 

Thank you so much for helping spread PANS PANDAS Awareness and Understanding!

I wonder, do you remember her?
Her name is Justine. She has PANDAS
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.

Justine, a now 6-year-old girl, had a very normal life before all of this. She did have 8 cases of strep the year prior so I scheduled an appointment to get her tonsils and adenoids out in April 2016. No one was pushing it, I just thought enough was enough; I scheduled and pushed for it. Much to our surprise at the ENT visit 20 days prior to her surgery, she tested positive for strep. We were given the normal 10-day course of antibiotics and thought nothing of it. She was pretty healthy, had a very high tolerance for pain and did great for the surgery and recovery. Life went on...until 7 months later.
 
It came on suddenly in November 2016; it changed our daughter, it changed our lives. She was 5 at the time of her onset. We had just returned from a family vacation cruise and a trip to Disney. This is part of her story.
 
Justine started gradually having frequent urination and some anxiety. I brought her to be tested for an UTI, which was negative. She then changed overnight on November 22, 2016 in Kindergarten. It all started with very OCD and frequent urination with the need to go to the bathroom every few minutes at school. She went 54 times by noon. We had her tested for UTI's a few times in a matter of days. We were told it was behavioral, nothing medical, maybe vaginitis due to a lot of swimming on vacation.
 
They were wrong. We knew this day we lost our daughter. This was no tantrum; she had a fit of anger, this was a major event-out of character for our daughter at school.
 
Our daughter changed, you could see it in her eyes, hear it in her voice and actions. She was gone from us. Justine showed signs of separation anxiety and had asked to be driven to school for 2-3 days leading up to this. She had a very difficult time separating from me. Absolutely terrifying. As parents we were not buying that our daughter was starting to act out behaviorally for no reason at age 5. She was a fully functioning happy, energetic, polite, great listener and smart girl. What in the world was going on? Who took her? What took her? What did we do for this to happen? There has to be something medically wrong!

PANDAS diagnosis for two children
The summer of 2010 we moved from Chicago to NC.  Days before we moved I had a doctor’s appointment scheduled to have Charlie’s kindergarten physical.  That day he received 4 shots, chicken pox, polio, DTap and MMR.  Shortly after, things got very dark.  Rages that would last for hours and end in crying, begging us for help.  Days filled with screaming, crying, kicking, spitting, biting. He lost eye contact. He would no longer let us touch him. He started to wet himself and the bed despite being potty trained for almost 3 years. He became obsessive. He became sensory deregulated; he stopped wearing clothes because he couldn’t stand the feeling of anything touching his body.   He could once write his name as well as any 5 year olds, maybe better. That disappeared and he was barely capable of a creating a scribble. He started to have throat-clearing tics. He would cover his ears constantly because he couldn't stand noise; it would make him irritable and angry. He would have meltdowns every time we were in the car, screaming and kicking my chair while I was trying to drive. He stopped playing with other kids. He would stand, all alone in his own world on the playground. He stopped telling us he loved us. Our little boy was gone.  While searching for answers, professionals told us everything from this is a reaction to our move over the summer, to bipolar disorder, to oppositional defiance disorder to finally Aspergers.  I knew this wasn’t Aspergers, I would have seen signs before age 5.  I fought the diagnosis but not without resistance.  I was treated like a mother in denial even though I was anything but.  After months of searching for answers we finally discovered PANDAS. 

We found a PANDAS specialist’s website.  When reading the criteria it almost fit Maddie more than Charlie.  We made an appointment and flew both of them back to Chicago from where we had just moved.  He diagnosed both Maddie and Charlie in November of 2010.  Charlie’s symptoms are obviously what led us to PANDAS, but the doctors said Maddie was actually more of a textbook case.  Maddie had chronic strep from the age 3 on.  Several bouts of walking pneumonia, coxsackie, sinus infections and finally post strep psoriasis which led to having her tonsils out when she was 8.  Unfortunately, this didn’t stop the strep; she continued to get it in other places of her body.  She had increased anxiety and OCD but no one ever put two and two together.   She had irrational fears, would constantly tap things, chewed her sleeve until it would disintegrate, would obsess over all sorts of things and had transient tics.  Anytime we addressed her OCD/anxiety with the pediatrician it was dismissed as a phase or a predisposition to anxiety. He told us if the OCD didn’t interfere with school, sleep or friends it was nothing to worry about.  So I trusted him.  Maddie wasn’t diagnosed with PANDAS until age 9.

Back in 2005 we were still putting smiling photos on our holiday cards and we still had a tiny bit of free time even with three kids age 5 and under, one of whom was a newborn and another had just been diagnosed with Autism. But come September of that year things really started to hit the fan. In 2004 when our son was diagnosed with Autism and as devastating as that diagnosis was, we thought for sure we had it under control. It was our older daughter who was the mixed bag of anxiety and emotions heading in to kindergarten, though her “crazy” behavior had started years earlier. The preschool teacher had seen the signs but never went as far as to interpret them for us. We do not think she would have called it PANDAS. At that point, I hadn’t even heard the term yet. Fortunately her Kindergarten teacher, who as a PhD in Early Childhood Education, noticed her behaviors insisted there was something wrong – really wrong but did not make a connection to PANDAS.
 
We took her to several pediatricians and developmental specialists who insisted that her behavior was a response to her younger sister’s birth or her brother’s autism. It was in the course of confirming a piece of information about Autism for my son that we stumbled on the term PANDAS. In its nascent stages of development PANDAS was very new as was the criteria for PANDAS as defined at the time. Our daughter was too young for the criteria, she had too few of the symptoms, she was not anxious enough to have PANDAS were some of the things I heard from the nice people. The not-nice people would not even discuss it.

This portion of my family’s PANS Story focuses on Mold as a trigger for PANS. Before this we had done many treatments for our son's PANS.

Background

• Initial diagnosis at 6 years old and then fighting doctors to find help.
• Treatments
• Antibiotics
• Tonsillectomy and Adenoidectomy
• Plasmapheresis
• IVIG
• Lyme diagnosis with combination of antibiotics
• Pyroluria diagnosis with treatment

Mold
After 4 ½ yrs, we had gains but not lasting health. Our LLMD told us that “when patients have been with me for a year and a half and haven’t gotten well, I tell them to look for mold.”

I made my husband help me make 8 trips to the town dump on the hottest day of the year, tossing out junk and damp cardboard from the basement, replacing rugs, getting rid of house plants, testing for mold in every room and his stopping me just before I took a sledgehammer to the sheetrock to look for mold behind the walls. We had disposed of a lot of damp moldy material but saw no improvements so stopped thinking about mold.

Then my son started fifth grade in a different wing of his school building and got markedly better. All PANS symptoms went away. His standardized tests showed that his estimated IQ in 3rd grade had been 93 but was now in 5th grade were 116. His Muscle pain went away; his eyesight improved and is convergence insufficiency corrected itself. He was able to stop antibiotics. At that point we did not realize there was a connection to mold.