Excerpt from the blog, Hidden Illness: Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn't get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were "simply not allowed". He told me to take away something of great importance every time she didn't comply. "She will learn" he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn't need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, "HOW could this have happened? Why? What happened to my child?" There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
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.
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!
Our son, who has PANS/Lyme, was having difficulty at school and at home. He was very defiant, shut down, inappropriate and just unpleasant to be around. After treating fairly successfully for PANS/Lyme, he caught another virus, which set off another flare resulting in severe sound sensitivity and OCD in the form of a spitting compulsion. Public places, such as restaurants, movie theaters, and even school, were just too loud and overwhelming for him. If you can imagine, his spitting was so extreme that he had to carry a cup in the car to spit into in order to accommodate any travel. Some children with PANS also want to spit into a cup to hoard their spit; that was not the case in our son.
Neurofeedback was not on our radar as a possible therapy at that point. We began noticing in the Facebook groups that parents were discussing the positive impact that Neurofeedback had on their kids with PANDAS/PANS and Lyme. After discussing Neurofeedback with a local neurofeedback practioner one evening, we decided to try it for our son. We scheduled a QEEG brain map and review, which documented the areas in his brain that were impacted. We were fortunate that this practioner is PANS and Lyme literate and can identify Lyme on the QEEG brain map, as well as understand the challenges in parenting a child with PANS/PANDAS. In fact, she not only treats those with Lyme and PANS/PANDAS, but is a leader in the field and mentors other psychologists and neurofeedback providers. She then developed a protocol to address our son’s needs, and he began neurofeedback on an aggressive schedule of 3 sessions per week. To our surprise, he didn’t fight going to neurofeedback, as he often did with other therapies, because he got to watch movies of his choice during each 30 minute session while his brainwaves were subtly being rerouted to their most effective path. As we learned, this “exercise for the brain” helps to change his brain wave patterns to optimal functioning through a process of subconscious reinforcement. We were skeptical that it could help, but we were also desperate, and at the point of the “let’s throw this at the wall and see what sticks” approach to therapies. I had no expectations for neurofeedback, but was still hopeful.
Within two weeks, we noticed a material difference. His entire attitude was more positive. After 20 sessions, we scheduled another QEEG brain map and review. This showed a 46% improvement in brain function, which even the practitioner said was remarkable. We changed his schedule to 2 neurofeedback sessions per week, and the progress continued over many sessions, to the point that it was noticeable to anyone who had spent time with our son. He was and continues to be more engaged, makes better eye contact, and his sense of humor is on full display. He is also more affectionate, less defiant, better able to articulate his emotions, happier, and more willing to try something new. Thankfully, his extreme sound sensitivity and spitting compulsion disappeared. Follow-up QEEGs have provided us with a tangible record of his improvement.
While results from neurofeedback tend to be relatively straightforward in treating conditions such as ADHD, autism, traumatic brain injury, and addiction, it is a little more challenging with Lyme/PANS, because the spirochetes move. For this reason, we periodically schedule a neurofeedback session to maintain his gains that we have maintained for more than two years. We thank our neurofeedback for bringing our son back to us.
I want to share my family’s story with PANS to help give hope to any other family that might be going through the same thing. My husband and I have a three-year-old son, Grayson. He came down with the flu on February 27. He was pretty sick most of the week, but on Friday, March 3, he was back to his normal self. We woke up to a living hell on Saturday, March 4. Our sweet boy had literally changed overnight. At first, we just thought that the “threes” that everyone had warned us about had set in. We were doing everything from taking away toys to timeout. We noticed that as the weekend went on, we could not get Grayson to eat or drink pretty much anything. Grayson has always been a pretty picky and light eater, but there have always been things that he would want. He would touch none of those preferred foods. My mother’s instinct told me that something was just not right, even though so many were saying that it was normal for a three year old to have tantrums. These were beyond anything we had ever seen our child do.
I took Grayson to his pediatrician Monday, March 6. Thankfully, we have an amazing pediatrician that takes no chances. She was extremely concerned; she said that any sudden or drastic change in behavior was a cause for concern, especially following an illness. That particular day, our pediatrician had a medical student following her around. The first thing that the medical student said was PANS and PANDAS. I had never heard of either term. We were sent for some lab work, and so ensued the worst week of our lives. Our pediatrician did not want to treat anything until she had the labs back. It was an awful feeling, as a parent, when I looked up what those terms meant. Inflammation on my child’s brain was not what I wanted to see. We watched our child act in ways that are so hard to even think back to. He would get so fixated on particular sounds or things from the OCD onset and all hell would break loose. We have never had a problem putting Grayson in his car seat, but, all of a sudden, the child was terrified of the car seat. It almost took two people to strap him into the seat while he was screaming and kicking and hitting.
On September 30, 2015, our 4-year-old son woke up a completely different person. He was speaking differently; he had uncontrollable anger and rage. All of his clothes felt itchy, he said. Then he started counting numbers, repetitively; it was non-stop number counting for hours on end. Then he started chewing the inside of his lips raw. We thought it was just an off day, but we knew something was terribly wrong the next day. He woke up the next day with all of the same behaviors as the day before, but this time something else happened. We were eating dinner at the dinner table when all of a sudden, our 4-year-old looked at us and said "Mommy, I just peed my pants on the chair. I didn't even know I had to pee." I knew at that moment something was so terribly wrong with our son, as he had NEVER had an accident since he was 2.5 years old. He wet the bed twice that night, and then woke up telling us that his brain was saying awful things to him and making him feel angry. He also developed a severe separation anxiety and anxiety about everything in general.
Before September 30th, our son was your average 4-year-old, kind, sweet, and outgoing. He loved making friends and going to school. His teachers once told us at parent teacher conferences that he was at the top of his class, morally and academically. He was vibrant and smart and so enjoyable to be around.
I immediately called his pediatrician and she got us right in. She took notes of the behaviors, did some of her own tests, then she called two other doctors in. Each doctor took turns examining our son. After they talked outside of the room, they came in and said we would be immediately admitted to a children's hospital for observation. Something was wrong with his brain, they said. It could be a stroke or a tumor, and he needed to be evaluated immediately by a neurologist.
If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today. Some posts have just the facts. Some posts are personal. NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly. Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website. Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.
Gabriella True, NEPANS Board President
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.
My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
NEPANS Board Members & Special Guests
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