Healthy, smart, athletic, popular and easygoing. These are the adjectives I would use to describe my son Jimmy.  A twin and the only boy in a family with three doting sisters, Jimmy's childhood was normal and happy. He had many close friends and spent countless hours playing tennis and soccer. His childhood was marked by only three illnesses: RSV at 4 months, Scarlet Fever at age 4 and H1N1 at age 13 and a hospitalization for a staph infection. He hardly missed a day of school throughout elementary and middle school. However, shortly after he turned 16 everything changed.

 

The Illness

 In January 2013, he was diagnosed with a virulent case of Scarlet Fever. He was treated with a 5 day course of Azithromycin (Z PAC) and improved.  However, approximately two weeks later he started to exhibit signs of profound anxiety, OCD and body tics and jerky movements. His best friend was worried and told me Jimmy wasn't "acting right" and was talking about suicide. We immediately took him to a psychiatrist who said, "relax mom, he's fine" yet he could not explain the body tics. I just kept thinking he hadn't been right since the Scarlet Fever so we returned to the pediatrician. At this point the body tics and jerking movements were undeniable. By the end of the school day he had to move his seat to the back of the classroom in AP Euro because the jerky movements were so bad. We were referred to a pediatric cardiologist who ruled out Sydenham's Chorea and Rheumatic Fever. The echocardiogram of his heart showed no inflammation. But in my gut, I knew something was wrong. His symptoms waxed and waned throughout the spring. By midsummer his anxiety and OCD came back like gangbusters along with significant fatigue and depression. We convinced his pediatrician to order blood work that revealed he had Hashimoto's Thyroiditis. Around this same time, we made him see a psychiatrist who put him on an SSRI. That's when things went from bad to worse.

 

The Diagnosis

On September 7, 2013, two days after the start of his junior year, Jimmy was admitted to the hospital for suicidal ideations. And it was there, 8 months after the Scarlet Fever, that he was almost immediately diagnosed with PANDAS. Finally, we had a diagnosis! However, the doctor in Connecticut that he was referred to had a 4 month wait. We had already lost 8 months trying to get a diagnosis and there was no way we could wait even another day. Through Pandasnetwork.org I discovered Dr. Joseph Malak in Poughkeepsie, NY, just a few hours away. As we drove home from the hospital, I pulled off the side of the road and called Dr. Malak's office. I begged and pleaded with the office manager until Dr. Malak agreed to see my son immediately. Importantly, he ordered all the pertinent lab work and started Jimmy on Doxycycline. Still, Jimmy showed no improvement. I will never forget Dr. Malak's words, "We'll get you better." For the first time in 8 months I now had hope. The blood work came back high for mycoplasma but the strep titer was normal. Was this really PANDAS? Just 3 weeks after Jimmy's PANDAS diagnosis, my husband, son and I flew to Chicago for a second opinion from Dr. Kovacevic (Dr. K.), a leading PANDAS doctor. Meanwhile, the psychiatrist from our hometown who put him on the SSRI said to us in a sarcastic tone, "Good luck following that PANDAS path, I'll be here when you get back." The sheer lack of support was palpable. Dr. K. put Jimmy on a high dose Augmentin for two weeks and he showed tremendous improvement, thus confirming the PANDAS diagnosis. Come to find out, the Scarlet Fever at age 4 was significant because that is when the autoimmune antibodies crossed the blood brain barrier where they sat until the second round of Scarlet Fever at age 16 caused inflammation of the basal ganglia.

 

The Treatment Path, and the Recovery

On October 31, 2013, we returned to Dr. K. in Chicago for IVIG and then we waited. My son tried to return to our public high school that fall but the anxiety and OCD were just too much. Many days that fall he was so fatigued he couldn't even get out of bed. The highlight of his day was at 3pm when his good friends would often stop by for a visit or a round of video games. One of Jimmy's friends actually moved in for three weeks in December just to help him out. Fortunately, our local high school teachers and administration were tremendous and Jimmy was provided with a tutor to keep him on track academically.  However, the thought of continuing this throughout the long, cold northeast winter was just too much. Jimmy, his twin sister and I relocated to Florida, where my best friend lived, for the remainder of their junior year while my husband stayed behind to work.  With his fatigue now subsiding and the help of his twin sister, he was able to attend school and complete his junior year.  Gradually, Jimmy's PANDAS symptoms improved over the course of 6 months post IVIG and he reported feeling 100% improved one year after IVIG. Jimmy and his twin sister returned to our local high school for senior year. They graduated in June 2015 and he got a 4.0 his first semester of college. Jimmy remains on a maintenance dose of antibiotics as well as probiotics, saccharomyces boulardi and thyroid medication.

 

Reflections

Many times throughout Jimmy's illness, I found myself thinking, "I wish he had cancer because at least people could identify with it" and "why him, why not me" Little did I know that I would be diagnosed with breast cancer one year after Jimmy was diagnosed with PANDAS. I had a bilateral mastectomy, reconstructive surgery and 16 weeks of chemotherapy. And yet, having a son with PANDAS was so much more difficult, more agonizing. As a parent it is so difficult to see your child suffer, that difficulty was compounded because of the sheer lack of awareness about PANDAS. Jimmy's illness affected the entire family. Day after day his twin sister went to school, often sitting next to the seat left empty due to her brother's illness. She relocated to Florida with Jimmy and I and rearranged her schedule so she would be in nearly every class with him. His older sisters, away at college, were often on edge, worried about their brother and whether the IVIG was prudent and would be effective. As parents, we were exhausted. Divide and conquer was the order of the day. My husband went to work in New York and I spent my days in Florida online learning about PANDAS, emailing doctors and reaching out to family and friends during this uncertain time. Moving to Florida, without my husband there for support, was terrifying. However, the status quo was even more terrifying.  

 

My advice to parents is to follow your gut, don't take no for an answer and never give up hope. Godspeed!