Adult PANDAS: Seek and Ye Shall Find
The prevalence of PANDAS in adults is remarkable if one bothers to look!
Posted Jan 24, 2015
PANDAS occurs in adults. Period. Is most of it new onset, or has it been there a long time, since childhood? Yes. Can one differentiate between the two? Not with any certainty in the preponderance of cases. Let’s ratiocinate for a moment. If an adult can acquire Rheumatic Fever or Glomerulonephritis after a strep infection, that adult can acquire PANDAS. If an adult can acquire Lyme disease, mycoplasma, and a myriad of viral infections, that adult can acquire PANDAS. If there is a flaw in this logic I missed it.
It has been a while since I posted anything on PANDAS. In that time I have diagnosed dozens of new cases of PANDAS in children, adolescents and, yes indeed, adults. A few actually came to see me to find out if they had PANDAS. They had read or heard about PANDAS and found me. Yet most had never heard of it.
The population is split between patients who had never been to a psychiatrist before, and those who had been to one, or many, with less than salutary results. The presenting complaints varied broadly; anxiety, panic, depression, ADHD, sleep difficulties, OCD, tics, Bipolar Disorder, ODD, headaches, fibromyalgia, medication side effects. And many more.
Why do I find so many PANDAS cases? Is it something in the air in Beverly Hills (well, that isn’t the best query)? Is there a cluster of cases in the area? No. It comes down to knowing when to look for certain things. If one does not know to look one never finds. If one knows to look, and looks, one often finds what is there! There are no conundrums here. There are a surfeit of undiagnosed cases of PANDAS throughout the populace and it is time for doctors to learn about it and to look for it. Even if one allows for the nature of my practice and reputation how can one solo psychiatric practice diagnose one to two new cases of PANDAS each week?
SIDEBAR: I have no idea how to put a sidebar in this blog so consider this to be one, or a long parenthetical. In Medical School the first lecture on psychiatry always addresses the obligation of the psychiatrist to look for or rule-out underlying organic (medical) factors that may cause or exacerbate a psychiatric problem or presentation. This is reiterated in residency. And in the first chapter of every general psychiatry textbook. It doesn’t suggest that every patient be examined or “worked-up” for every conceivable diagnosis known to man. Where is the problem?
Here is the part where I will be called boasting and conceited. Why, in 35 years of practice have I diagnosed 19 cases of Porphyria, 10 cases of Neurosyphilis, hundreds of cases of thyroid disease, epilepsies, brain tumors, hormonal and other metabolic aberrations, and now more than 100 cases of PANDAS? Well…I looked.
Indeed, many new consultations are very straightforward and do not require more than clinical acumen to arrive at a diagnosis and treatment plan. Further evaluation becomes necessary when Plan A fails. Many presentations have histories and or symptoms that demand a work-up. I won’t go into a litany of them here. Physicians are supposed to know them. Serial drug trials and cocktails are not all there is for us to do.
Contorted belief systems—“I don’t believe in (ADHD, Fibromyalgia, PANDAS, lithium induced hyperparathyroidism, PTSD, PANDAS)”—have no place in medicine. Nor does ignorance. One does not suddenly catch OCD at 32. Could those explosive tantrums or outbursts be manifestations of Tourette’s? How come one’s anxiety and panic seem to get worse after a sinus infection? Are those tics attributed to one’s amphetamines (which help one’s ADHD dramatically) an unmasking or exacerbation of PANDAS? What about the refractory Anorexia Nervosa that gets worse after each bout of tonsillitis? Might it be a brilliant idea if the doc checked your; Anti-DNAase B strep antibody, streptozyme, ASO titres, Lyme and Mycoplasma IGG and IGM, ESR, RPR, and a few other things based upon circumstance. And if the labs aren’t perfect how about a visit to a knowledgable ENT, and definitely an immunologist.
I am not an immunologist. I refer all of my cases to a superb one, Dr. Richard Harris. He finds all sorts of subtle immune deficiencies that I did not study in Medical School because they were not yet known. IGG subtypes and defective responses and such. Then he does nifty things with Pneumovax, allergy treatment, IVIG and more.
The questions and pleas received from patients and families around the world are frustrating. I cannot treat them over the Internet. Maybe you need to push your physicians more. Bring them data and references. Encourage them to make enquiries. But do keep in mind that psychiatrists are (supposed to be) physicians first who evaluate, diagnose and treat their patients. Not prescription machines. It is okay, and even fine to enquire before a first visit if a doctor is aware and knowledgable about certain things, and to expect a forthright answer.