Our daughter was a normally developing child. But that changed soon after she turned 6 years old when we saw a rapid rise in anxiety and agitation. We had no idea what the cause was or what to do about it. Shortly after these symptoms started, she was diagnosed with sleep apnea and her tonsils and adenoids were removed to help alleviate it. Her anxiety and agitation remitted completely and suddenly. However, as we had not heard of PANS at this point, no correlation between cessation of symptoms and the tonsillectomy were made.
We had four good years after that but then at the age of 10, things really started to decline quickly again. We saw the fast emergence of severe OCD, higher anxiety, extreme separation anxiety, depression and tics. Our child had completely changed once again. By the end of 4th grade she was no longer able to attend school.
DIAGNOSIS & TREATMENT
During the year, she received several misdiagnoses, which resulted in being prescribed several medications that not only were ineffective but made symptoms worse. Thankfully, our integrative psychiatrist determined that she had a neuro-immune based disorder. She encouraged us to travel out of state to see a neurologist who specializes in PANS. This neurologist was our “hero” and started her on the road to wellness. First, he prescribed antibiotics, which helped tremendously, but the benefits were not long lasting. Next we did a prednisone burst and it helped even more, but the results were short acting as they often only temporarily tamper inflammation.
We eventually worked with another specialist who prescribed our daughter IVIG, and that was the start of even more healing. For our daughter, it took many IVIGs and not just one. She had significant improvement after the first round; anxiety and depression were the two symptoms that were alleviated the most. However, after about 10 weeks she would decline again and symptoms would increase. So she would do another round of IVIG.
Even with tremendous gains, we knew there was a missing piece to her healing. We returned to integrative medicine with now our third PANS specialist. She was put on a strict gluten free, diary free and sugar free diet. We saw more improvements, specifically a dramatic decrease in anger, hyperactivity; she lost weight and her mood was much more stable. However she needed two more rounds of high dose IVIG. The integrative medicine doctor chose to administer two more doses but instead of waiting for a decline, only allowed 7 weeks between doses. After these dietary changes and two additional rounds of IVIG, OCD was the one remaining symptom. OCD was not constant but it continued to cycle. She would get waves of OCD along with very intrusive and scary thoughts every 24 hours, starting at about 5:00pm and would last one-two hours.
She was then diagnosed with Bartonella and was treated with two prescriptions: Azithromycin and Rifampin. Several natural antibacterials and antivirals were added to the regimen including Olive Leaf Extract. Within two weeks of treating Bartonella, her OCD was almost completely gone. Since she has been treated for Bartonella, she has not needed another IVIG. All in all, her doctors said we have been treating Strep (documented), Mycoplasma, congenital Lyme and Bartonella.
Currently at age 15, my daughter is really starting to get her life back. She is a competitive gymnast and is taking an improv class. She is homeschooled and is getting straight A’s. She is still on a very strict diet, and we are now using supplements to support her immune system so she continues stay healthy.
It has been a difficult ride, and our story is more complex than most. Our wishes are that kids will be diagnosed much more quickly and treated with more accuracy.
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.
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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