Teresa, we live in Ontario, and are desperately looking for someone to treat our son. Do you know of any paeditricians/doctors in the province who specialize in PANDAS?

Any help would be much appreciated!!

Long story short, we’ve been on the long-term antibiotic treatment course for 3 months now, and my son continues to improve. This boy who, just 5 months ago, could not leave his home, attend school, have friends over, sleep through the night, etc., all because of the voracious OCD raging in his head, is well on his way to becoming a new and renewed version of his pre-OCD self. He’s back in school full-time and reclaiming his “math whiz” title. He has his friends over to play. He sleeps through the night and wakes with a smile on his face.

So I owe Beth more than I can ever repay. And if she uses the notariety and access to push PANDAS forward, good for her. She’s never claimed to be a medical professional, and she’s never claimed to have all the answers. She’s only claimed to be an unrelenting, advocating, take-no-prisoners mom in a fight for her son.

As for the accuracy of the information getting out there . . . it is a utopian goal worth pursuing. But PANDAS is a complex issue and a lightning rod for views at both ends of the spectrum, as well as in the middle. I honestly don’t believe anybody could get it all right, all of the time, in the eyes of everyone involved. I’ve read and listened to the top 3 practioners in the “war on PANDAS,” for example, and even THEY do not agree!

With regard to accuracy, however, I do feel compelled to make an important note with respect to Diana P.’s mention of breakthrough strep infections while on Augmentin, “Sammy’s drug of choice.” To be more specific and accurate, Sammy’s “drug of choice” was not Augmentin, but Augmentin XR, a very different formulation of Augmentin and one that provides time-release coverage and a lower clauvanic acid component. The two drugs should not be referred to interchangably, as a PANDAS patient can have very different reactions to each of them; I know because I’ve witnessed my son’s very distinct response to each.

Finally, I’m not sure, but if there’s any inference that Beth or the PANDAS Foundation is advocating any single line of treatment or a single antibiotic, I believe that is also an inaccurate and unfair representation. “Saving Sammy” merely reports what worked for Sammy, but I have never read nor heard Beth suggest that Augmentin XR is THE answer for treating either strep or PANDAS and, so far as I know, none of her work nor PANDAS Foundation work is underwritten by Augmentin XR’s manufacturer, GlaxoSmithKline. Anyone who conducts the appropriate research will find references to strains of strep in different parts of the country that are resistent to various antibiotics, and practitioners tend to have their “favorites,” as well. You and your doctor have a responsibility for vetting the efficacy of any line of treatment you undertake.

Some of us will not like the wording Beth chooses for the campaign. Meanwhile, I, for one, don’t care for most of Swedo’s words as, by virtue of her strict written parameters, my son would never have “qualified” as a PANDAS case at all, though he is definitively suffering from the disorder. I’ve heard similar discouraged comments from dozens of families seeking answers and care for this disorder, but even the pre-eminent researchers and practioners cannot get on the same page . . . yet. So to suggest that there is a single set of “appropriate” or “accurate” terms that everyone involved would readily subscribe to at this point in time is folly. Beth could sign up several of the foremost professionals in the field and they would not agree, and even if concensus was eventually reached, upon publication there would be another five in the PANDAS community who would take issue with some or all of the semantics even then.

In the end, I remain grateful for Beth’s taking up the flag of this PANDAS crusade, but that is not said in order to diminish the substantial contributions that have come before her, such as PANDASNetwork or ACN/Latitudes. I’m not sure why people feel compelled to fight for “territory” or “credit” when we’re all working as best we know how to get this disorder the attention and research it deserves and requires. Beth will tell her story. I will tell mine. You will tell yours. And they are all valid experiences. The PANDAS Foundation cards will open the dialogue, and each of us is free to elaborate upon, caviat, alter or altogether decline to use them in our local battles against this obnoxious disorder and the ignorance that surrounds it.

Cheers to Beth and Sammy! Cheers to PANDAS Foundation, PANDASNetwork, ACN/Latitudes, Swedo, Dr. T., Dr. N., Dr. K., Dr. M., Dr. L. every PANDAS sufferer, every PANDAS parent! May we all focus on what’s important and leave the rest behind.

She wrote: “In reading this article, I don’t see Ms. Maloney implying in any way that PANDAS IS tourettes.”

I’m afraid Leslie and many others may have completely missed the point of my comment. My objections are NOT to the wording in the press release above. As I stated in my original comment, my problem is with one line of copy on the cards. While to some it may seem like splitting hairs, this one line has major implications. It seems that most of those defending this effort may not even be aware of what the cards say, or they might agree with me.

The final version sent to me lists as a single symptom:
“motor and vocal tics (Tourette’s)”

This is entirely different from the NIMH’s webpage that is very clear to state that children with PANDAS may have “tic DISORDERS such as Tourette’s Syndrome,” and “children usually have dramatic, ‘overnight’ onset of symptoms, including motor OR vocal tics…”

By definition, Tourette’s is genetic, and must include both motor and vocal tics, have no longer than a three month period without symptoms, and last more than one year:

“Tourette Syndrome (TS) is an inherited, neurological disorder characterized by multiple involuntary movements, called motor tics, and uncontrollable vocalizations called vocal or phonic tics.

Diagnostic criteria for Tourette Syndrome (DSM-IV TR) 2

•Both motor and vocal tics are present during the illness, although not always at the same time.

•The tics occur many times a day (usually in bouts) nearly every day or off and on for more than 1 year, with never a tic-free period of more than 3 months in a row. ”

We know that the tics associated with PANDAS do not have to meet this criteria, hence the inappropriateness of listing the wide range of tic disorders associated with PANDAS as Tourette’s on these materials about to be distributed nationwide.

To be sure, there is plenty of conflicting information out there. Generally, Tourette’s is thought of as a genetic disorder. While there may be a genetic predisposition for children who develop PANDAS, the similarities stop there and the key differences begin. If children with with TS like symptoms respond to antibiotic treatment, PEX or IVIg, then Tourette’s is ruled out and PANDAS is confirmed. Research studies have confirmed Tourette’s children do not respond to these treatments. Herein lies the most critical difference.

The bottom-line here is, children are being denied treatment for PANDAS because they are being written off as Tourette’s cases. This is a SERIOUS problem, and as the materials currently stand, this fledging effort spearheaded by the PANDAS foundation is inadvertently going to compound this problem.

Tourette’s has no place on a PANDAS symptoms list, unless it is clearly spelled out that the symptoms may be mistaken as Tourette’s and untreated PANDAS could lead to the eventual development of Tourette’s. The entire point of this campaign is that PANDAS cases are not dismissed as genetic psychiatric disorders and treated as such.

“’The Foundation’s first goal is to ensure that no child is diagnosed with a mental disorder before strep is ruled out as an underlying cause,’ says Deb Curran, the Foundation’s President.”

Exactly. So why list tics as Tourette’s on a SYMPTOM LIST designed for early diagnosis?

I find it highly concerning that Ms. Maloney would cite her child as her source for formulating these materials. That is blatantly irresponsible. Getting the word out accurately for such a controversial disorder that parents are not only stuggling to have recognized, but to have their children treated as INDIVIDUALS, is critical.

The children’s medical needs come before putting Ms. Maloney up on some sort of pedestal. She did not discover PANDAS – a simple Google search of symptoms led me straight to the NIMH’s page on this condition long before she started making appearances on talk shows. Yes, awareness is key, but I’d rather have no campaign than an irresponsible one. With an effort such as this without the collaboration of the medical community, it is likely the onus will still be on parents to request strep tests. It is doubtful physician’s will take this any more seriously than they are now with a parent-only effort of flyer distributions. It could even result in a backlash.

Tread carefully.

There are various ways to get word out about new happenings — I think a blow over the head kind of campaign that she is launching “got strep” will certainly get the attention of docs. Many will roll their eyes; some may consider things more carefully.

It is however ESSENTIAL that the PANDAS Foundation begin to back up their information with input from somone like Swedo or Nikolades; really helping practitioners understand that there is a great deal of nuance to be considered in treating these kids.

As a word of caution; I know of 8 children who have had breakthru strep infections on Augmentin; the Sammy antibiotic of choice. Penicillin is no longer 100% effective in thwarting strep. Sometimes Azithromycin or Cephalosporins are important to use. Re-testing for strep if the child re-exacerbates.

At any rate — Game on ladies — you’ve got the docs attention. Now use it wisely.

Marci Lichtenwalter
Director of Moondance to the Cure
youtube Jamie’s Story http://www.youtube.com/watch?v=p0EyBTuSODA

I have been working as a counselor in the school setting for 20 years and what I have learned is that the medical community is not always on the forefront. It takes dedicated parents like Beth to shake things up and not allow children to suffer. Remember when children were institutionalized because of downs syndrome? Thank you Beth for your energy, intelligence and ability to advocate for your son and others.