http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html

It turns out that this study didn’t actually have any PANDAS kids in it:

“Dr. James Leckman, a professor of child psychiatry at Yale and specialist in Tourette’s syndrome, was the lead author on what is perhaps the most persuasive study challenging the PANDAS hypothesis. That long-term study, published in 2011, found no compelling evidence linking the exacerbation of tic and OCD symptoms to new strep infections.

Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way.

Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point.”

It seems my reply never showed up. I’m so sorry for the delay. Did you find resources in your area or are you still looking for help there?

If you think your son’s tics are so severe, painful, or impairing that they warrant actual treatment, then ask the pediatrician for a referral to someone who specializes in tic disorders, or call the TSA at 718-224-2999 and ask for their professional referral list for your area. Many kids with tics do not need treatment. They just need time for their nervous system to mature more. But if the tics start interfering with your son’s functioning in school or their social development, and if simply educating others and creating a supportive environment isn’t sufficient, then treatment might be something to consider. I generally don’t like to see children put on medications unless their tics are really severe, painful, interfering, or self-injurious. And even then, I’d explore something like CBIT first to see if the child can learn techniques to suppress tics.

In terms of what to tell your son, that, too, is very individualized. Some kids don’t even seem to know that they’re ticcing, while others are acutely aware. Some kids who know they tic aren’t bothered by their tics, while others are frustrated, embarrassed, or in agony, etc., etc. So what I’d say depends on the child and how they are doing. Certainly if your son raises the question or asks, you should give him some answer and accurate info. At age 7, my son was acutely aware of some of his symptoms and really bothered by them. And they were very noticeable to peers who were either asking him to stop or telling him to stop. In his case, then, we started by explaining to him (and then his friends) that these movements and sounds were called “tics” and that it was like having the hiccups – he couldn’t stop it. And we answered his questions and his theirs.

If you do talk to your son, I would advise that you reassure him that lots of kids have tics and probably some of his friends do, too – or they will have them at some point. And I’d tell him that it’s not a sickness and that his friends can’t catch it from him. And then I’d problem-solve with him as to how to get around or work around any tics that were interfering for him. But again, it’s such an individual thing that I am loathe to really give any advice that might seem like one sizes fits all – when it usually doesn’t.

One of the most important things parents can do is to create an emotionally safe and supportive environment in their home. Children need to know that they are loved and accepted for who they are – tics and all. If the home is focused on tics or parents watch a child like a hawk, it tends to be more stressful for the child. I’ve seen too many cases where as soon as the child walks in, the parent starts asking how their tics were that day. Instead, keep the focus on the whole child – “How was your day?” should mean something like, “Did you learn anything new today? What did you do in school that was fun? What was the best part of your day?”

For most children, tics do not need to become the unwelcome centerpiece of a child’s development if we can help them keep everything in perspective and teach them that we all have challenges that are opportunities to grow and become problem-solvers.

In many cases, with maturity, the tics seem to drop off or remit on their own. I wouldn’t say that we’re “healing the brain” with therapies such as CBIT, but there is often significant value for the child in being able to stop symptoms that are painful, distracting, or socially embarrassing.