What is PANDAS Syndrome? The Diagnosis Behind 'Saving Sammy'

Dear TMom PANDAS is indeed a horrible illness, but it is not limited to children, and I don't believe it's as small a subset as is commonly thought, and hopefully my brother's story will help to illucidate this:   My brother just turned 60.  When he was 2, he developed rheumatic fever and ultimately rheumatic heart, after a devastating bout of strep throat; he was in the hospital for almost a year, followed by a year and a half in a convalescent home, where he was one of the 'lucky' ones (hundreds and hundreds of children died back then from rheumatic fever; they spent their last dies in these convalescent homes  - much like those which housed tuberculosis patients back then).   On his recovery and release, he was treated with antibiotics:  gantricin 250 mg 3x/day until he was 21 years of age. Luckily for children nowadays, they have such strong classes of antibiotics that children only go through  a course of treatment which lasts only months -  not the years my brother endured (and I say endured, because no one back then could guess the complications which years and years of antibiotic treatment would have on growing children's systems).  Nonetheless, with this shortened treatment course, parents can now see the onset of symptoms while children are still young, and may then seek information, support, treatment, etc. My brother (and I suspect thousands of others), whose course of antibiotics ended in their 20's, experienced at that time, an abrupt onset of these symptomalogies (associated with what is now known as PANDAS) for which the enormous span of time between cause and effect made any relation virtually impossible in the early 1970's.  And as you might extrapolate, it is probable that the association might never have been made if not for the development of more powerful antibiotics which greatly reduced the treatment time from 20 years down to just a few months, and sometimes less. Because he was in his early 20's, the doctors we spoke with suspected schizoprenia, though they always noted that his specific symptoms were not really consistent with schizophrenia.  Of course, remember, my brother was now in his 20's, and no longer under our parent's control, so it wasn't as though anyone could take him by the hand to the doctor.  Along with his tic outbursts and movements (which we now know is associated with Sydenham's Chorea), he also experienced somewhat disoriented, illogical thinking, and he could be very emotionally (not physically) combative, adamantly refusing to see a doctor, as he felt there was nothing wrong with him. Over the next 5-6 years, his tics grew so out of control that he eventually lost his ability to drive and to work, and moved back home with our mom; where ultimately and unfortunately the weight of his (still undiagnosed) illness crushed my mother completely. Flash forward 30 years:  my brother was living (still undiagnosed) with me following my mother's pasing, and I was a practising health care provider.  One day, I was reading one of many medical journal articles, and in it was a description of a newly discovered illness, dubbed PANDAS.  Everything suddenly fell into place; it was literally life changing!  More for me actually than anyone else, but in helping me to understand him, greatly helped him as well.  I was just incredibly sad that my mother didn't live to learn that there was a name for what was wrong with her son, and that none of it was her fault ---------- years ago, anything wrong with your children was your (the mother's) fault;  my mother was already crippled by the rheumatic heart diagnosis in that many years later, everyone knew through education on the topic that children with a fever and sore throat should be immediately tested and treated for strep as indicated.  In my mother's day, however, no one knew that ----- it was only through the experience of my brother's illness and thousands of others (many of whom died) that this lesson was learned.  I'd always told her that she couldn't hold herself responsible for something that was unknown back then -- but she never really forgave herself nonetheless.  After so many years of worry, treatment and resulting proclamation of his restored good health, I believe she might have finally gotten past it all.  This new and baffling illness in his early 20's, and his rapid deterioration thereafter heralded her ultimate demise as well. My brother is still in my care, and I won't bore you with all we've been through in my eforts to care for him, and secure treatment/support -- not to mention the difficulty of even getting doctors to recognize, or even accept PANDAS as an illness.  It's all almost moot now. My real point is to note and stress that though it may start in childhood, it is not just childrent that are affected.  I am sure that there are so many of my brother's 'brothers' out there, who long ago survived a devastating illness, only to be left out there for years and years and years in an isolated state of mental illness with no diagnosis, no hope, no recourse and no treatment. Thanks for listtening.