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 He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned.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.
Before diagnosis, Ke'Ala and our family saw many doctors and was given many possible diagnosis before a doctor finally correctly diagnosed and successfully treated her. I will not go into every detail of every mistake made along the way due to the lack of education and awareness of the doctors. But below is a quick listing of what we went through before her recovery.
One lab visit in week seven of her hospitalization, requested by unconvinced parents and a pediatrician that had tested and treated PANDAS before. The rest is our journey out of the special kind of hell that too many families of children that have been misdiagnosed with mental illness are suffering.
Ke’Ala’s PANDAS Story
Last winter, our daughter, Ke’ala, at eleven years old, became very ill, quite suddenly with psychiatric symptoms that went misdiagnosed and heavily medicated to the point of catatonia and suicide. Now, as we relive that ungodly winter, with all of the anniversaries, we are horrified by what she endured at the hands of people that we entrusted to help her.
It is imperative that the medical community be educated about PANDAS/PANS so that when a child presents with psychiatric symptoms, they FIRST rule out infection-based causes. We have a moral obligation to all children that we ensure this happens so that no child needlessly endures a world of pain and fear so deep, and the sense of helplessness and terror that our daughter did.
After many years of Gracie being too embarrassed to have her story told, she has agreed that if her story helps one child not suffer what she has endured, it is worth it. So...here is her PANDAS story...
As I tell her story, I will place in when she had an infection, but note that I only discovered the connection many years later by placing her medical records on a time line with photos and other memorabilia.
Started with a Stutter
Gracie was the perfect baby and toddler. I mean perfect! She never cried, always smiled, and took in everything around her with joy. She talked at 6 months, walked right on time, learned her letters by 1 years old, spoke 10 word sentences by 1 years old, and seemed to learn anything that came her way easily. She was an independent kid who never hesitated to go into new situations without me by her side. At 18 months old, she got a strep throat. She soon began to stutter, repeating sounds, words, and parts of sentences over and over. It was exhausting to try and wait for her to get a thought out. She began speech therapy. It did little to help, but her stuttering would just disappear almost over night. We would joke and call it her 'bumpies'. We later realized that Gracie's bumpies correlated with her getting sick. Her bumpies would start, and I would say, "Ut'O, your bumpies are back. You will be sick within 2 days." And sure enough...she was. This went on for years.
Sudden Separation Anxiety
At 3 1/2 years old, she all of a sudden did not want me to leave her at preschool or gymnastics. She clung to me where she was once her happiest and most excited to go. I chalked it up to normal toddler stuff. It did not last that long, but would come and go after a period of sickness. Life was pretty normal for a few years with small bouts of red-flag issues.
No one can tell the stories of what it is like to live with PANS/PANDAS like those that have experienced it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family or patient telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience.
For families living with PANS/PANDAS, the aim of sharing these stories is to help you not feel so alone in your struggles, to let you know there is a family out there just like you, and ultimately to let you know that there is hope. For those who are just beginning to learn about this autoimmune disease, we hope you begin to understand PANS PANDAS with greater depth.
As more stories are contributed, a wider picture of what the condition is like will form including how many similarities there are and how many differences there are in its manifestation, in the path to diagnosis, in treatment options and in the outcomes. NEPANS invites you share your story with us today. Below are the guidelines for submitting a PANS PANDAS Family Story.
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