I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
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!
Many Doctors. Many Treatments: The long winding road of PANDAS from IVIG to PEX to Rituximab to Helminths
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.
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.
Onset occurred at age 5, almost 5.5, in September 2010, the Thursday of the second full week of school. He came off the bus that way, moving like electricity was running through him, afraid to sleep alone, with urinary frequency. Those symptoms were just the start, as more features (fight/flight anxiety, extreme sensory defensiveness, trouble swallowing, fear of vomiting, dilated pupils and light sensitivity) came on in unexpected waves throughout that year. He did have a “sore throat/cold” and pink eye summer 2010.
We saw many doctors over 18 months; we visited our family doctor, a pediatric urologist, ER doctors, 2 neurologists, psychotherapist, neuropsychologist, allergist, immunologist trying to get to the bottom of all the new symptoms. I was surprised at the ease with which some providers would want to prescribe big-ticket psych drugs without doing things like checking blood sugar or thyroid! He was eventually worked up for diabetes (negative) and other urinary disorders (also negative). As waves of more symptoms hit including, sudden sensory defensiveness, irrational and overwhelming fear of red lights, extreme perfectionism, declaring that he wished he were dead; we scurried from one specialist to another searching for help.
DIAGNOSIS & TREATMENT
We learned about PANDAS from co-workers familiar with Dr. Louise Kiessling's work in RI and from the April 2012 Parents Magazine article on PANDAS. One co-worker was listening to our struggles and ran in with the article saying it sounded just like what I had been describing. I read that article and wondered if the reporter had a spy-cam in my house. Our family doctor looked at the article and agreed that could be a possibility, checking his throat, sinuses, ears, perianal region and blood for strep. The throat culture was positive despite treatment for strep back in Jan-Feb. In April of 2012 with our family doctor, for his initial treatment for suspected PANDAS, he started a round of antibiotics (Pen V), receiving 3-10 day rounds totally about 4 weeks of antibiotics. We saw dramatic improvements 4 days in. No antibiotic = full relapse.
It was clear at my son’s 2-year appointment, that he was not meeting his milestones. He was non-verbal, did not parallel-play, did repetitive play and movements, was in his “own world” and had temper tantrums that were more than what the terrible two’s should be. I was referred to the “Birth to Three” services in CT. My son was given speech and occupational therapy while he attended regular preschool. But by his third birthday, it was clear it was not an appropriate placement and he entered the Special Education Pre-School program. His behavior had declined even further. He ignored his baby sister; was not affectionate to anyone. He would scream if I walked him on the “wrong” side of the road, refused to go into certain stores, or used the “wrong” cup.
Looking over his medical files from this period of his life, he did have strep throat as a toddler. He was on antibiotics for ten days but clearly that was not enough to heal him. That round of strep throat might have gone but our life was PANDAS had really just started. After that he was sick often with many rounds of strep throat along with ear infections, colds and viruses. I joked with the Pediatrician that they were going to name an exam room after him.
Looking back, he definitely had OCD. He was also extremely hyper and impulsive. Worrying about his safety, I built a fence around my backyard because it was hard to keep up with him, especially with a newborn in tow. I call it his college fence because of its cost. At this point he had no formal diagnosis. Although he had many autistic symptoms/behaviors, his special education teacher thought it was not autism. Soon he was diagnosed with Apraxia and the belief was that his tantrums, repetitive behaviors, low muscle tone and inability to play with others were due a severe speech delay. During this time, there was a marked increase in behavioral issues: his tantrums were escalating and getting him into bed was extremely difficult. We basically stopped having play dates because of his behavior; we were becoming more and more isolated every day.
Our daughter was a normally developing child. But that changed soon after she turned 6 years old when we saw a rapid rise in anxiety and agitation. We had no idea what the cause was or what to do about it. Shortly after these symptoms started, she was diagnosed with sleep apnea and her tonsils and adenoids were removed to help alleviate it. Her anxiety and agitation remitted completely and suddenly. However, as we had not heard of PANS at this point, no correlation between cessation of symptoms and the tonsillectomy were made.
We had four good years after that but then at the age of 10, things really started to decline quickly again. We saw the fast emergence of severe OCD, higher anxiety, extreme separation anxiety, depression and tics. Our child had completely changed once again. By the end of 4th grade she was no longer able to attend school.
DIAGNOSIS & TREATMENT
During the year, she received several misdiagnoses, which resulted in being prescribed several medications that not only were ineffective but made symptoms worse. Thankfully, our integrative psychiatrist determined that she had a neuro-immune based disorder. She encouraged us to travel out of state to see a neurologist who specializes in PANS. This neurologist was our “hero” and started her on the road to wellness. First, he prescribed antibiotics, which helped tremendously, but the benefits were not long lasting. Next we did a prednisone burst and it helped even more, but the results were short acting as they often only temporarily tamper inflammation.
We eventually worked with another specialist who prescribed our daughter IVIG, and that was the start of even more healing. For our daughter, it took many IVIGs and not just one. She had significant improvement after the first round; anxiety and depression were the two symptoms that were alleviated the most. However, after about 10 weeks she would decline again and symptoms would increase. So she would do another round of IVIG.
Even with tremendous gains, we knew there was a missing piece to her healing. We returned to integrative medicine with now our third PANS specialist. She was put on a strict gluten free, diary free and sugar free diet. We saw more improvements, specifically a dramatic decrease in anger, hyperactivity; she lost weight and her mood was much more stable. However she needed two more rounds of high dose IVIG. The integrative medicine doctor chose to administer two more doses but instead of waiting for a decline, only allowed 7 weeks between doses. After these dietary changes and two additional rounds of IVIG, OCD was the one remaining symptom. OCD was not constant but it continued to cycle. She would get waves of OCD along with very intrusive and scary thoughts every 24 hours, starting at about 5:00pm and would last one-two hours.
She was then diagnosed with Bartonella and was treated with two prescriptions: Azithromycin and Rifampin. Several natural antibacterials and antivirals were added to the regimen including Olive Leaf Extract. Within two weeks of treating Bartonella, her OCD was almost completely gone. Since she has been treated for Bartonella, she has not needed another IVIG. All in all, her doctors said we have been treating Strep (documented), Mycoplasma, congenital Lyme and Bartonella.
Currently at age 15, my daughter is really starting to get her life back. She is a competitive gymnast and is taking an improv class. She is homeschooled and is getting straight A’s. She is still on a very strict diet, and we are now using supplements to support her immune system so she continues stay healthy.
It has been a difficult ride, and our story is more complex than most. Our wishes are that kids will be diagnosed much more quickly and treated with more accuracy.
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