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.
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.
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.
My son is an amazing, passionate, sweet, sensitive boy. As a baby, unlike our daughter, he had low energy and always seemed a little down. At about 7 years old he began having rages in his room, throwing things and screaming. A Neuropsychologist diagnosed him with anxiety. In subsequent years, other symptoms began to arise: vocal and motor tics, obsessive thoughts, and his moods were all over the place, from depressed to manic at times. I was sick in my heart that at 7 years old he was receiving therapy for depression, anxiety, OCD, and emotional lability. Other changes we noticed, but didn’t realize at the time were PANS symptoms, were the urge to urinate frequently and unusual gait. One of his OCD manifestations was the compulsion to confess trivialities. Two different neurologists diagnosed him with Tourette’s syndrome. It got to the point where the therapy wasn’t enough: he started talking about hurting himself; his self-esteem was low and wasn’t making many connections with other children. Some of his journal entries included the following:
By the time he was 11, my husband and I reluctantly decided the time had come for him to start medication. We were hesitant and afraid, but were willing to do anything. His Neuropsychologist was familiar with PANDAS and referred me to a Psychiatric Nurse who treated children with PANDAS. At the time I really didn’t think he had PANDAS because everything I had read stated that it had to be an abrupt overnight change and his symptoms seemed mild in comparison to other children. I did not realize that his “abrupt” change could have happened back when he was 7 and having his rages. The Psychiatric Nurse met with my husband and I for two hours and then with my son for an hour and a half, asking all kinds of questions, trying to figure out the big picture. She was a Godsend. Based on those interviews, she chose to do further blood work as well. At this point my son had never had pneumonia or strep throat. His test came back very high for Strep and for Mycoplasma Pneumonia. His Lyme test came back negative. I did not realize at the time that the routine Lyme testing often comes back as a false negative.
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