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I haven't been on this forum for a decade but am returning with some VERY important information:
I adopted b/g twins when they were three years old from Russia and they are now entering high school. They have been a joy....they get along well, have been very healthy, are A students, and athletes (swimming, running...preparing to be triathletes.
A week ago my daughter started showing up to class late, was withdrawing from friends, work being turned in late, aggressive with her brother. Her grooming went south and she quit running. Refused to comply with instructions from us and teachers. Never has she shown these behaviors before. Calling home sick even though the nurse could find nothing wrong with her...no fever...no sore throat.
Within a week she was completely unglued. We took her to the doctor, a psychiatrist and finally the ER to have her tested for drugs thinking someone at school might have laced her beverages. Nothing turned up.
Brought her home and called the pediatrician the next day when the school called again saying her gait was off and she was garbling her speech. Her brother noticed she sat through class with her eyes closed, lethargic.
I had had enough. Called the pediatrician and insisted on being heard. Passed along the symptoms and doctor was then thinking brain bleed or tumor. With the words "brain bleed" I said I am ER bound and hung up.
More blood tests. Nothing. CAT. Nothing. The nurse hints that this is the age in which they start seeing major psychiatric conditions set in and we start preparing for a long journey ahead.
In the few hours we were in the ER she was becoming even more agitated and started showing OCD behaviors (needing to wash hands constantly, food is poisoned) and slow facial ticks (raising eyebrows, tongue in cheek.) I mention to the doctor that she had always been so healthy, never had surgery, only had been to the doctor once for a strep infection in twelve years.
All of a sudden I could see the wheels spinning and the doctor asked the nurse for an antibody titer. It came out positive.
My daughter was diagnosed with PANDAS, a rare autoimmune reaction in which her antibodies were attacking the basal ganglia deep in her brain.
We are now home and she is on a heavy dose of amoxicillin and ALL of her symptoms are receding! We have gone from a normal happy girl, to her complete undoing back to a nearly healthy daughter in the course of a week.
This is a rare condition and most doctors miss it. If you have an adoptive child (possible genetic component) who suddenly shows OCD and tic behaviors, PLEASE HAVE YOUR DOCTOR DO A TITER SCREENING FOR STREP ANTBODIES. and consider PANDAS as a possible diagnosis.
This was simply a reaction to a strep infection. It is so rare that the only other case seen in my area was a young boy who had been institutionalized by the time they realized it was PANDAS. Like my daughter, a few days of antibiotics and his symptoms began to subside.
I will answer any questions you all have. My fear is that there are kids across the country who are acquiring this and being misdiagnosed.
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