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Readers’ views on the PANDAS diagnosis and on childhood vaccinations

Solving a medical mystery

Thank you for making people aware of the concept that strep infections can cause sudden onset of obsessive/compulsive disorder in children [“Little boy, big fears,” Sept. 27. ]

The phenomenon of PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) results in serious behavioral and emotional changes. Countless children and families suffer needlessly, pursuing treatments that can’t be effective until antibiotics are prescribed.

As stated in the article, many cases of OCD develop slowly and are not attributable to PANDAS. But when onset is sudden and dramatic, why not rule out PANDAS by conducting a blood test and administering a trial course of antibiotics?

An excellent book on this subject, “Saving Sammy,” by Beth Maloney, tells the story of a young boy who developed PANDAS, suffered while the quest for the correct diagnosis dragged on, and then recovered beautifully such that he is currently a successful student at Carnegie Mellon University. As a licensed mental health counselor specializing in OCD, I highly recommend this book for the library of every physician and mental health provider.

Cindy L. Richetti, Ponte Vedra Beach, Fla.

[PANDAS] has affected my daughter for the past five years. Unfortunately, doctors rarely know how to treat it. The treatment can simply be antibiotics. Instead, doctors prescribe psychotropic medication, which, for this illness, is considered an off-label use. We’ve been fortunate that we have the resources to travel across the country to see doctors who are educated and competent in treating this illness. My heart aches for those who don’t have the resources or confidence to tell their family practitioner that they are wrong.

Heidi Schuster, Franklin, Wis.

While we may not yet have perfect understanding of all the mechanisms behind PANDAS, it would be unwise to ignore the research that does support the relationship between immune function and psychiatric or neurologic illness, and that also has suggested that medical intervention may have a powerful role in the treatment of PANDAS.

Cognitive behavioral therapy and the use of psychotropic medication for symptom relief are greatly helpful. Providing parent support and educating school staff are also critical. To not explore other medical treatments in a careful manner, with fully informed parents and a clinician following a child’s progress closely, would mean losing an opportunity to protect a developing brain from what is currently best understood as an autoimmune process. It is essential that families know that treatment is available, even if we must take cautious steps forward, carefully selected to suit the context and history of the individual child.

While some may still hold that PANDAS is controversial, consider asking the opinion of parents whose children, to paraphrase the Teagues, have come back from “the edge of the cliff.” They would likely say the following: PANDAS is real, and recovery is possible.

Megan Willems, M.D., McLean

Child, Adolescent and Adult Psychiatrist

Talking about shots

Michelle Andrews’s column “No vaccination? No treatment.” [Sept. 27] talked about how “some pediatricians are now taking action” against parents who refuse to follow the American Academy of Pediatrics’s recommended vaccine schedule. I would submit that this has been going on for years.

Eight years ago, I was kicked out of a Fairfax-area pediatric practice for asking to hold off on vaccinating my 1-year-old daughter for chickenpox. I asked whether I could sign a waiver saying I understood the risks of such a delay but was told that I would be refused treatment at the practice if I didn’t adhere to the academy’s schedule for vaccination. Subsequent calls to three other nearby pediatric practices all told the same story: I could not go to their practice unless I had my child vaccinated on the AAP schedule.

We found a family practice willing to develop a vaccine schedule that worked for our family of four children, including delaying the start of vaccines until age 6 months and skipping some entirely for the foreseeable future. I’m able to have a real dialogue with our primary-care physician about vaccinations and because of that was persuaded to have one of my children vaccinated with a vaccine I had previously not agreed to.

When pediatricians close the door to such dialogue and believe that parents who want to delay or deny certain vaccines have no right to do so, they are doing a great disservice.

Even the AAP thinks doctors shouldn’t be so hard-nosed about its recommended vaccine schedule. It’s time that parents and doctors talk frankly about the risks, concerns and benefits of all vaccinations.

Sarah Hamaker, Fairfax

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