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 name is TJ, I am a freshman at in High School, and I have PANS. As a school project I have decided to raise awareness of PANDAS/PANS. Contacting my former teachers and their colleagues is only the beginning. As recently as last week, I was reminded how good it felt to talk to other kids like me, I decided to write a book geared towards kids 8-16 – sharing stories.
Most of my teachers were amazing and continue to still support me. However, there were a few teachers and nurses that were, well, mean. They were quick to label me “bad” when I was not “bad” before. My hope and the reason I am writing this is to educate the educators, reminding them that it isn’t always what it appears and sometimes there are reasons. PANDAS/PANS is a physical medical condition with emotional symptoms, (I say my brain has strep).
You are the front line to this, I ask you to help spread awareness. If you see a child – out of sorts… not themselves, save that child - consider that this may be a medical problem, not a behavioral problem. PANDAS/PANS is real – it is not an excuse. My auntie is a teacher and because of my story, in June, told a parent to check into this. Over the summer, this student was diagnosed and came back to school a new person – and will graduate this coming June with honors (he failed and stayed back in 9th grade).
Here is my story. Fifth grade (2009) started like all other years – excited to see my friends, celebrating my 10th birthday, anxious to hear my name to see who my teacher was, but more importantly, to see which friends were in my class. That was my biggest challenge, to be with my friends. There was a lot of craziness with H1N1 and I spent Halloween stuck sick in my house. A few months later, I went to zoo camp – I loved zoo camp – attending since I was 2. On Thursday, Mr. Chris had to call my mom I was under the table and wouldn’t come out. The next few months (well years) were scary. I spent so much time at doctors, hospitals, and programs. I could not attend school – I could not leave my house. I took a lot of different medicines for a lot of different things. I thought I was going insane. Nobody could tell me what was wrong with me, not even my mom. The school department and some teachers were very mean – I would but I was not able to go to school. What I wanted was something I was unable to do. I missed my friends. My mom had to home school me because no one understood what was going on. People push away what they don’t understand.
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.
During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
My Son Bradley was born in 1998 with Down Syndrome. He was and still is everyone's special boy. He has made amazing strides in life and continues to amaze us today. He verbal skills are very limited so he could never tell me when he was sick. It was very difficult figure him out sometimes.
Sudden Onset OCD and TICS
Back In 2007, when he was nine years old, things changed suddenly. He developed behavioral issues, OCD and Tic disorder. Because of his disability, the psychiatrist would blame his Down Syndrome instead of looking further to find the root cause. As a parent you are desperate to help your child with these issues. We decided to try anti-psychotic medications. However, things got worse over time so in 2011 we decided to change doctors because I was tired of all the horrible medications and side effects. We started seeing a pediatric neurologist when he was 13 years old. He was still going to school but we were noticing more sporadic meltdowns and aggression, more panic and tics, The Neurologist diagnosed him with ADHD, OCD, ODD, IED, with possible Tourette Syndrome, GAD, and Panic Disorder. One thing we pointed out to the Neurologist was he had been treated with numerous antibiotics for different surgeries and infections mainly in his sinuses and ears and after those rounds of antibiotics he had wonderful behavior so much so it was like he was a different child. She looked at me like I had two heads and I was the crazy one.
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.
When our son was born we had no idea the fight he had ahead of him; his complicated journey nor the determination that this little person possessed to fight and beat the odds each and every time.
Fighter at the Start
He was born at 38weeks in what I call a Grey’s Anatomy scene. He was born with a mass larger than his head growing from his neck weighing 1pound, 8 ounces. It was a Cervical Teratoma. Within days of life, our little boy was whisked away into a 7 hour surgery in hopes of removing this mass impeding on his airways and esophagus. We were told to expect the worst; that he would never eat on his own, requiring a g-tube to feed nor would he breath on his own, thus requiring a respirator. That was IF he were to survive the surgery at all. At 1 year of age he was given a clean bill of health; he was developing and reaching all his milestones. He did it, he beat the odds, and he was our miracle boy!!
Gregory continued to thrive as the years passed. Life was wonderful and Greg continued to prove that his almost near death experience was behind us: straight A student, competitive athlete, great social life, helpful, kind, compassionate and loving with his baby sister. We have always been very careful in terms of health, giving proper nutrients, probiotics, and good multivitamins. We thought this kid was untouchable.
Until, Gregory’s world was yet again turned upside down. I picked him up from school one day last year and noticed he was repeatedly turning his head, “Greg, what are you looking at”, “nothing mom, why?” He had no idea what he was doing. When we arrived home I continued to monitor his motor movements, it continued and as the minutes passed, they continued to increase in severity. My heart was sinking, what was happening? All of a sudden, his eyes were rolling continuously and his whole body began to flinch. I rushed him to the hospital, they ran an MRI, blood work, everything was checking out fine. “So, what was happening to my child?” Numerous appointments, tests, etc. Still, no answers. I began my research, while still racing to any specialist who would see us. Finally, after 6 weeks a pediatrician gave him a diagnosis of Tourette’s, OCD and ADD.
For those who know Gregory know that he is a pretty quiet soul. Respectful, hardworking, athletic and very focused in every task he chose to take on. This made no sense. How does one change so drastically in just a few months? He kept spiralling more and more out of control. The tics increased, he would throw his head back, his entire body would go crazy at times, and it looked as though he was getting struck by lightning. I refused to accept this was happening and he would live his life like this. Something was going on inside of his body. I was convinced now more than ever.
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.
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