EVIL PANDAS: A Scourge on the Brain
Cure ADHD co-morbidities and maybe fibromyalgia
Posted Feb 02, 2011
Children and adults with ADHD are said to have increased "comorbidity" of innumerable neuropsychiatric, learning, and psychosocial problems. I have written extensively about this elsewhere. In future posts I will explore several of these areas a piece at a time both for the sake of brevity and clarity. Today I wish to look at the neuropsychiatric aspects.
As a prefatory remark let me remind you that ADHD is indeed in her biological entity that is genetically predetermined. Thus far at least seven specific genetic loci have been identified as related to the expression of ADHD. Certainly more will be discovered in the future. And I will add the reminder that ADHD per se is not truly a disorder but a difference. The ADHD brain is an adaptive mutation found in populations that have been challenged, stressed and forced to adapt to very difficult circumstances. Thus I would like you to keep in mind the idea that individuals who are genetically predisposed to one group of phenomena-ADHD being a spectrum of manifestations, not a uniform cookie-cutter presentation in every case-may be genetically predisposed to other phenomena, some of which have not yet been identified or if identified not yet connected.
This brings us to P.A.N.D.A.S., the eponym for Psychiatric and Neurologic Disorders Associated with Strep. It has nothing to do with bears that eat bamboo. It has to do with the microorganism streptococcus (and very possibly other bacteria as well) that are known to induce autoimmune disorders in genetically predisposed individuals. P.A.N.D.A.S. was first identified in the late 20th century. The literature internationally has grown exponentially over the past decade. This is a formally acknowledged disorder in virtually every country with modern medicine, from Finland to New Zealand, Japan, Western Europe, South America, you name it. It remains "controversial" in the United States for political reasons. The two primary political reasons are firstly that the crowd at Harvard and Johns Hopkins bristle at the notion that someone other than they discovered something in vigorously denied the existence of this until about 2006 when Harvard tried to claim that they discovered it to the vast amusement of the world medical community. Secondly, the NIH has been slow to formally acknowledge it and continues to keep it "under investigation" because of pressure from the insurance industry. Since the international recommendation for the treatment of P.A.N.D.A.S. is tonsillectomy it should come as no shock to anyone that the insurance industry in the United States is not eager to have a mandate imposed that would return us to a time when tonsillectomy became rather routine as opposed to exceptional. But I have myself out of order here so let me get back on track.
It has been known for well more than a century that in certain individuals, now known to be genetically predisposed, when exposed to or infected by streptococcus developed antibodies to the streptococcus which mistake that individuals tissues as bacterium and attack those tissues. Most people have heard of rheumatic fever (attack on the heart), glomerulonephritis (attack on the kidneys), and some may have heard of St. Vitus' Dance and Sydenham's Chorea (attack on the nervous system) that cause bizarre movement disorders.
We now know that the attack on the nervous system in P.A.N.D.A.S. is more broad, deep and subtle than previously understood. The list continues to grow. Thus far there is a clear association in many individuals with: Tourette's syndrome; tic disorders; OCD; generalized anxiety disorder and anorexia nervosa. I have had several patients with each of these, diagnosed serologically who underwent surgery and had complete resolution of these problems. I also have now diagnosed patients with myoclonus, dysphonia and hyperekplexia who are awaiting surgery and I anticipate excellent results. Also I have put forward the hypothesis and begun evidence-based clinical research with several colleagues to verify that in patients with fibromyalgia who are found often to have low-level rheumatoid arthritis or lupus that the first autoimmune post infectious process is again P.A.N.D.A.S. I have a few adults now looking forward to tonsillectomy. [I was the person who identified the sleep wake disorder of fibromyalgia and its treatment with GABAergic agents back in 1998. Curiously this is about the same time that P.A.N.D.A.S. was identified and both concepts are just beginning to filter down to the general medical community].
What are the implications of all this? Enormous if you or your child happens to be suffering with one or more of these supposedly unrelated yet very distressing disorders. Individuals with ADHD who have "comorbid" tics, Tourette's, OCD and anxiety are notoriously difficult to treat because the traditional stimulants and noradrenergic antidepressants may exacerbate the other problems. Keep in mind that many impulsive and explosive children with ADHD who are said to be bipolar actually have Tourette's syndrome. And the treatments for these comorbid processes are often miserable: Haldol and other antipsychotic drugs for Tourette's and tic disorders. High-dose SSRIs and atypical antipsychotics for OCD! Not to mention the vast number of patients with supposed anorexia nervosa who actually have ADHD and P.A.N.D.A.S., whose eating disorders evaporate postoperatively and then can be treated easily for their anxiety, attention and sleep problems. Often a great deal of very bad psychotherapy and conditioning has to be undone as well. [A substantial proportion of supposed bulimics actually have ADHD and become symptomatic as a result of the disorder of carbohydrate metabolism present in ADHD and this is amenable to a very simple psychopharmacologic adjustment and does not appear related to P.A.N.D.A.S. nor need surgery].
Of course there has been resistance to the evolution of all of this information and its incorporation into mainstream medicine. The eating disorder therapists at eating disorder facilities often behave as do the zealous AA members when an explanation and approach other than their own is put forth. Usually the patients are the losers. Too many old-timers in pediatrics, psychiatry and neurology, not to mention immunology and rheumatology have not heard of or "don't believe in" this newfangled stuff. The good ones do believe it when they see it in their patients benefit.
No, everyone who has one or more of the problems discussed above does not have an autoimmune disorder amenable to a surgical cure. But many do. This blog is about attention and attention disorder. I hope this post gets your attention and focuses your concentration on your diagnoses, evaluation and treatment. P.A.N.D.A.S. can be diagnosed with a good clinical examination and one blood test. The test does need to be done by one of the few labs that can do it properly. Correct diagnosis and treatment intervention can change the life of you and your child.
If you would like more information about this you can do a web search and get in touch with some of the networks that are aware of this phenomenon. Please visit my website noted above and my related blogs. If you need more specific information respond to this post. Thank you.
Be sure to read the following responses to this post by our bloggers: