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.
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