It started shortly after his third birthday. It began with an insistent throat clearing. It was constant and when he cleared his throat it was a harsh, violent clearing sound. It made our throats hurt when we heard it. I put him on children’s Claritin hoping it was only spring allergies. The throat clearing continued and the behaviors began. He had long, drawn out meltdowns, absolutely horrific keening screams that went on and on for hours. When it began, we called it “being held hostage.” We couldn’t go anywhere, do anything and in the dead of summer when it was 90 degrees, we closed the windows as we were met daily by dirty looks from some of the closer and older neighbors. Nothing calmed him down when the meltdowns began and we never understood what set him off. At times it was a simple, “good morning!” Other times it was more obvious; sound was often the culprit. Anything from the almost imperceptible humming of refrigeration in a store, to the sudden roar of the hand dryers in public restrooms, to my husband or I softly singing, most sounds set him into an inconsolable puddle of tears or a mass of fury, depending on the day.
As the symptoms progressed, we sought help from groups that help diagnose sensory processing issues and Autism. We had three appointments a week at a local resource center, for occupational therapy, play therapy and speech. We had multiple tests run at his Pediatrician’s office; checking for issues such as excess lead or heavy metals, we even asked for him to be tested for PANDAS. The protocol at the local hospital was a strep swab and ASO blood titer, followed by ten days of antibiotics. The ASO titer and swab came back negative, the antibiotics did nothing (perhaps that first antibiotic was cephalosporin), and we continued our search for the answer to our son’s erratic and heartbreaking behavior.
Months of searching for answers turned into years. I cried myself to sleep most nights, frustrated that I was unable to help my child. I stayed up late, searching the Internet desperately for an answer, ordering every “difficult child” book from the local library hoping it could somehow help us, give us advice as to how we could help this child who I did not know anymore. My husband and I left no stone unturned, seeking out psychiatrists, and neuropsychiatric testing as well as chiropractic care and cranial sacral therapy. We tried medication, we took dairy and gluten out of his diet; I cooked everything from scratch to eliminate dyes and processed foods, and eventually, I left work to be home full time once he got to the point that we could not safely leave him in a daycare setting. At this point he had already been kicked out of one preschool. The meltdowns progressed into intrusive thoughts that kept him awake at night, he heard voices, and one day I found him trying to cut his arms with a toy.
Like so many families and so many stories I now hear, we became a family of five limping by on one salary. The disorder strained our marriage, his siblings received far less attention than our child with this unknown illness and we struggled to pay our bills and scrape by. Desperate for an answer, one night I plugged “tics and intrusive thought disorder” into the search engine on my computer. PANDAS came up and when I read it, I knew I had been right three years prior when I first suspected the disorder.
After endless research, I found a psychiatrist who is a PANDAS specialist at a large hospital. After being told there was a five-month wait list to see him and the visit would be out-of-pocket, I begged his assistant to have him contact our pediatrician and talk to her about his protocol for testing and treating. A few days later, our pediatrician called us into the office and said he had contacted her and gave her a rundown on how to proceed, including testing our child's ASO and AntiDNAse-B titers. Sure enough, he had an abnormally high titer showing a past infection.
His pediatrician immediately began him on a course of Augmentin and we were referred to an Infectious Disease specialist at the same hospital as the psychiatrist. Our visit couldn’t come soon enough. The Augmentin didn’t seem to be doing much for our child and we began questioning again if PANDAS was the correct diagnosis. We were on edge; waiting many months for an appointment was taking its toll on all of us. We needed answers and somehow, I knew my child was still somewhere in there, somewhere in this little lost boy who never made eye contact, screamed constantly, broke mirrors and self-injured. The Infectious Disease doctor was, and will always be, our savior. He prescribed Zithromax, a hearty antibiotic that helped with stubborn infections. On day four of this antibiotic, we saw a child we had not seen in over three-and-a-half years. I will never forget that day. It took several months for him to level off and the behaviors to fully dissipate, but it happened. At Christmas we went back for a follow up visit with the Infectious Disease doctor who had the pleasure of rejoicing with us, seeing how much this child had changed for the better. Gone were the tics, the siren noises and the growling. In their place were smiles, giggling and a silly six-year old child. Our boy was back.
Looking back, the two keys to success were finding the right antibiotic and finding the right doctor. The zithromax was a game changer but at one point during his treatment his brother got strep twice in a six-week period, causing our PANDAS child’s titers to rise and to flare so badly that we had him on two steroid bursts and added in Ceftin. Since we had the right doctor, we were able to react quickly and treat swiftly and appropriately.
During the time he was in a huge crisis, neither diet nor the alternative treatments did anything for him. Today, he is mostly dairy free because his brother is allergic. He has a low inflammatory diet so eats limited gluten, dairy, sugar as well as other inflammatory foods. He takes anti-inflammatory supplements such as Omegas, Vitamin D, garlic and turmeric as needed.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!