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Expert Opinion Article on PANDAS - Obsessive Compulsive ...

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As in most of psychiatry, PANS is a clinical diagnosis, meaning that there are currently<br />

no laboratory or genetic tests that can c<strong>on</strong>firm the diagnosis. As such, a sec<strong>on</strong>d opini<strong>on</strong><br />

to find c<strong>on</strong>sensus <strong>on</strong> the diagnosis of PANS between two experienced physicians may be<br />

useful.<br />

Additi<strong>on</strong>al Medical Testing to C<strong>on</strong>sider Prior to Onset of Treatment<br />

Many physicians report that a throat culture appears to be key (even if there are no signs<br />

or symptoms of pharyngitis). Due to the difficulty in properly sampling these children, a<br />

two-swab sample should be taken to check for bacterial col<strong>on</strong>izati<strong>on</strong>. The first swab<br />

should be a rapid strep test. It is very important that the culture is obtained properly by<br />

vigorously swabbing across the entire pharynx, behind both t<strong>on</strong>sils and the uvula. If the<br />

child doesn’t gag and protest, the swab is probably inadequate. If negative, use the<br />

sec<strong>on</strong>d swab for a 4-hour agar plate culture. If these are both negative, c<strong>on</strong>sider testing<br />

for Lyme disease, Mycoplasma, vitamin D, Ferritin and thyroid. Many children with<br />

recurrent upper respiratory infecti<strong>on</strong>s have immune deficiencies and would benefit from<br />

an immune functi<strong>on</strong> assessment such as blood counts measuring quantitative<br />

immunoglobulins and a referral to a pediatric immunologist.<br />

Finally, many physicians rely <strong>on</strong> antibodies to the exotoxins of streptococcus to c<strong>on</strong>firm<br />

a prior infecti<strong>on</strong> measuring ASO and AntiDNaseB. These tests have fixed windows<br />

where the measurement may begin to be positive 1-8 weeks after initial infecti<strong>on</strong>.<br />

Typically two measurements are required. The first should be obtained as so<strong>on</strong> as<br />

possible after the suspected infecti<strong>on</strong> and the sec<strong>on</strong>d at least six weeks later. It is<br />

currently unknown whether carrying the bacteria without an active infecti<strong>on</strong> al<strong>on</strong>e is<br />

sufficient to cause symptoms in PANS children.<br />

If test results are all normal, it does not rule out a diagnosis of PANS, and exposure to<br />

infecti<strong>on</strong>s from close c<strong>on</strong>tacts should be c<strong>on</strong>sidered.<br />

Treatment Opti<strong>on</strong>s and Strategies to C<strong>on</strong>sider for PANS<br />

While acknowledging the need for additi<strong>on</strong>al research, we also cannot sit idly by while<br />

children scream in terror. We have to help children suffering today. Clinicians around<br />

the country have started treating our kids. Best practices suggest that <strong>on</strong>e develop a<br />

treatment plan based <strong>on</strong> interventi<strong>on</strong>s with the minimum effective dose, an interventi<strong>on</strong><br />

with the best cost/benefit ratio (less intrusive, minimal short term and l<strong>on</strong>g term side<br />

effects, good at preventing relapse, easy to administer, tolerated well) and treatments<br />

that have the most research behind them. Research can include c<strong>on</strong>trolled studies<br />

(better) and case reports (good but less informative). We will rate each of the following<br />

treatments currently being used as a guide for professi<strong>on</strong>als and parents to c<strong>on</strong>sider<br />

when trying to determine the best course of acti<strong>on</strong>. This is said with the caveat that at<br />

this point in time <strong>PANDAS</strong> and PANS treatments are drastically under researched.<br />

Please see the end of this article for more about how to help <strong>on</strong> this fr<strong>on</strong>t.<br />

IVIG: The original research studies investigating possible treatment opti<strong>on</strong>s were d<strong>on</strong>e<br />

by giving children IVIG (intravenous immunoglobin). Essentially, this treatment gives a<br />

Internati<strong>on</strong>al OCD Foundati<strong>on</strong> - PO Box 961029, Bost<strong>on</strong>, MA 02196<br />

www.ocfoundati<strong>on</strong>.org | Ph<strong>on</strong>e: 617-973-5801 | Fax: 617-973-5803

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