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Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.
