Interesting perspective from Beth Maloney

[mdmom]

This came to my inbox from Beth Maloney, author of Saving Sammy and advocate for PANDAS families. I am posting it here with her permission:

 

Hello there,

 

It rained here for most of Memorial Day Weekend. Just as I cozily sat down to write a warm & fuzzy email about Sammy's graduation including a big thank you for all the cards (still coming in), the phone rang. It was Marianne Fox calling, the mother of Grant Acord. He had just been arrested in connection with the high school bombing plot in Oregon.

 

Marianne and I had been in touch since the fall of 2011, and she gave me permission to share this information. Marianne contacted me in 2011 because a few months earlier Grant had been diagnosed with PANDAS by Providence Medical Center in Portland OR. He had extreme OCD, anxiety, and depression, and she'd been unable to find a physician who knew what to do. His strep titer was 950. I gave her as much direction as possible, and she began her search. She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster.

 

I've done a couple of interviews since then. Everything one says doesn't end up in an interview, and the interviewee has no control over the edits. But I want you to know that they've all asked, "were you surprised." My answer was always, "no, but not specifically about Grant." I remember watching the Newtown coverage and wondering whether the shooter might have had a brain infection, and I knew it was unlikely that anyone had bothered to check. I've wondered because I know your stories. I’ve read about your children who've become violent, punched holes in walls, attempted suicide, pulled knives on family members, and jumped from moving cars. I carry those thousands of stories with me everyday, and it was inevitable that one day I'd get the call. PANDAS isn't an excuse for Grant's behavior; it's a factor in his behavior. It's why when the push to pay attention to mental health came after Newtown that I reached out for the Obamas and the Bidens.

 

Shying away from how serious PANDAS can become is, I believe, is a mistake. I know some parents disagree with me. They are distraught that PANDAS has been linked to the possibility of such a horrible event. I have the opposite opinion. Perhaps THIS is what it takes to get elements of medical community off their high horse of hubris and to begin acting like grown-ups. I am sick to death of the ridiculous and illogical position taken by so many who are uneducated in the field and yet make pronouncements as if they are experts. I am tired of reading that PANDAS is "rare," "uncommon," and "controversial." When I read a doctor say, “I’ve never seen a case,” I think “because you’ve never looked for one.” And when I read that there's "no science" to back it up, I wonder how they could have missed the hundreds of evidence based studies. I’m disgusted by the way parents are treated by hospitals who accuse them of “doctor shopping,” “Munchausens by Proxy,” and try to steal their kids. Thomas Insel MD, the director of the NIMH, expressed my frustration more gently in his blog of March 26, 2012. He traced the history of neuro-syphilis back to 1912 and wrote, "The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept." Dr. Insel is in a position that demands he be politic in his comments; I am not. I bluntly believe the attempts to cause children with PANDAS to go untreated constitute medical child abuse.

 

I know you are not all facebookers, but I truly think you should take a look at my fan pages especially when PANDAS is associated with a national event. I don’t always have time to keep you up to date. The pages are always full of all the recent interviews, articles, and opinions. You do not need to join facebook to do this - just go to the LINKS page on savingsammy.net and click. For an excellent recent article about PANDAS please see The Walrus, a highly respected magazine in Canada. Here is the link...be certain to read the postscript. http://thewalrus.ca/a-feverish-debate/

 

On a lighter note, as promised, here is a photo of the world's most famous PANDAS success story...What does a young man do when he is twenty-three years old, has already helped to change medicine and impacted countless lives? When he has thousands grateful for his very existence, and has graduated from the computer science school at Carnegie Mellon University? He launches a start up! Keep you fingers crossed for Sammy's success. He so deserves it.

[T_Anna]

She has a good point, will an incident like this make the medical community accept the possibility that psychiatric behavior is triggered by illness?

 

Unfortunately, I feel that the story has already died down...for good or bad : /

T.Anna

[MomWithOCDSon]

It seems to be something of a binary response. There are those who think any publicity is good publicity, and there are those who do not. I'm guessing only time will tell . . .

[LaurenK]

Grant was, however, loaded up on psychotropic medication of course. <- so then how was PANDAS a factor? Who's to say the medications didn't do everything? I don't think this was really necessary. I think the child mind institute wrote a considerably better follow up article than this. This is a rant, followed by a brief update about one of A LOT of people with PANDAS who are successful. Many people simply haven't gone public.

Edited June 3, 2013 by LaurenK

[PowPow]

I appreciate Beth's efforts.

However, PANDAS is not a brain infection. These small slip-ups really have an effect on the medical community. "They" think "we" have not a clue what we are talking about.

A brain infection is not the problem here.

 

LaurenK : can you post the link to the article you mentioned?

Edited June 3, 2013 by PowPow

[LaurenK]

Beth wrote it above:

 

She stayed in touch over time, never successfully finding a physician who would stick with long term antibiotics in significant doses. Grant was, however, loaded up on psychotropic medication of course. Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight. She did not have the opportunity to follow through on that idea because Grant was arrested. Thank God police received a tip and averted a disaster.

[PowPow]

What was the child mind institute article?

[EAMom]

This is confusing...I have been watching the FB pages as well.

 

My understanding from FB (mainly Beth's page):

1) he was on abs for 2 years (no info on dose, or if he tried more than 1 type)

2) he reacted badly to psych meds (which led me to believe he wasn't on them)

 

Beth has many good points. But, I wish we knew more about his workup, treatment, medical history.

 

I also wonder about this:

"Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight."

Is Beth under the impression that antibiotics aren't needed (or normally used) with IVIG?

Edited June 4, 2013 by EAMom

[mommybee]

Here's the much more balanced follow-up put up by the Child Mind Institute that Lauren referred to.

 

May 28, 2013 | Caroline Miller

An Oregon teenager was charged with aggregated attempted murder today for plotting to blow up his high school. Seventeen-year-old Grant Acord was caught with an arsenal of bombs and bomb-making material secreted under the floorboards of his bedroom, along with checklists and diagrams with which, it is alleged, he hoped to outdo the Columbine killers.

The already disturbing story took another painful turn today when his mother reported that he was suffering from PANDAS. That's the rare and controversial form of acute-onset OCD that is linked to strep infections. PANDAS—it stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcus—is a syndrome which can come on virtually overnight, after a child has contracted a strep infection. Symptoms include tics and the severe obsessions and compulsions associated with OCD, as well as a host of disorienting behaviors, including intense separation anxiety, sleep disruption, handwriting changes, trouble eating, panic attacks, irritability and emotional outbursts. Parents describe their children as suddenly unrecognizable, and conventional treatment for OCD doesn't work effectively—you can read more about it here.

It's troubling whenever an act of violence is associated with a particular psychiatric disorder, because it's easy for people to stereotype other people with the disorder, wrongly, as prone to violence. In this case it's particularly troubling because parents of kids with PANDAS are already in a very tough spot because of dissent within the mental health community about how to treat PANDAS, and whether, in fact, the disorder actually exists.

Acord's mother's attorney has been quick to use the disorder to build a defense, telling the press that the teenager is "very mentally ill" with PANDAS. As Dr. Jerry Bubrick, the head of the Child Mind Institute's OCD program, puts it, "That statement will do nothing but increase the stigma about a condition that is already so misunderstood."

Dr. Bubrick says that although a small percentage of kids with PANDAS may have explosive episodes in which they are violent, "it tends to be more impulsive and situational, and the child is usually remorseful afterwards. That is very different than premeditating a violent attack, which involves conception, planning and precision. Although both are expressions of anger, their intentions are very different and should conceptualized differently."

 

Parents of kids with PANDAS already face daunting confusion as well as skepticism from those clinicians and researchers who don't consider the link between PANDAS and strep conclusively proven. Despite efforts to resolve the conflict—including a new broader category called PANS (pediatric acute-onset neuropsychiatric syndrome) that does not specify the link with strep or any other form of infection—the teams are still far apart. The ongoing controversy makes treatment extremely difficult for parents to obtain, and we hate to see any more challenges added to their lives, and those of their children.

 

http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot

Edited June 4, 2013 by mommybee

[mommybee]

The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid.

 

Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.

[PowPow]

Well said ,mommybee!

 

I think I could kiss Dr Bubrick;)

[SSS]

I respect what Beth Maloney wrote, and value her tremendous service.

[WorriedDADNMOM]

Thought I would chime in........While I agree somewhat in part what you guys are saying about Beth not really knowing about violence associated with pandas and not being a medical doctor, I must disagree on other points quite firmly and make the main point I think needs to be made. We need to keep up the pressure on the medical community to start telling the truth and doing their "due diligence" with us on a case by case basis.

 

1) My kiddos all had different reactions to their milk allergy as kids. They are all same blood related----same two parents. 2) Despite this fact-- Their pandas onsets were all very dis-similar in initial onset. 3) In my kids' school(after learning about others kids and teachers issues) and people close our "CIRCLE" of friends and acquaintances., We have multiple people with different diagnoses. Tourettes, Pandas, Immune dysfunction, generalized anxiety disorder, tics, RA in their teacher------all this within the same 12-24 month time frame.

 

While every kids journey with infections, Pandas,PANS,ASD,Tourettes,ADHD, Bi-Polar------you name it, are very dis-similar, as we are as people, very dis-similar yet very similar. We all have an immune system that will respond (or not), be overwhelmed and fail to respond and allow bacterial or viral infections to take root and reek havoc on our body and mind. Having these multiple assaults on the immune system at the same time are not good. In addition to being vaccinated. In addition to worsening diet and the list goes on.........and on.

 

So the point is this-----I think it is as simple as-------Everyone's genetics imply how our immune systems will react to every bacterial and viral infection, everyone's bodies are different. We are, as a culture eating more and more crap. And we are vaccinating a ton more than when I was a kid.

 

That being said........ Look at the Child Mind Institute and read all the causes of any of the disorders. They all say genetic and sometimes environmental. Yes, everything is genetic and we all live in the environment, but using the excuse that only genetics and "environment" cause LITERALLY EVERYTHING is disingenuous at the very least.......There are specific things to look for with the onset of any symptom. Until the medical community "grows a pair" and starts treating people like adults and starts saying what the truth is, we will be stuck and quite frankly sick......both physically and mentally until this change happens. Until people can be educated and understand what their family history is and how and why they have gotten sick, one can then take pro-active approaches. I am not a doctor, nor am I really that smart, but I know the truth when I see it and it is not being told to us by main stream physicians.

 

I have leaned heavily on our DAN Integrative Ped. I like his thorough and practical approach.

1) Look for and debulk infections

2) Eliminate triggers to the immune system

3) Supplement vitamins and minerals lacking in body to promote optimum bodily/immune performance.

4 Implement sick protocol on how to deal with future infections.

 

With three kiddos with Pandas or Pans or Tics emotional lability or bi-polar or whatever you might want to call it, I refuse to stay stupid and not try to intervene. I know what our genetics might be as it regards to mental or auto-immune issues and If I can do something, I am gonna try.

 

Sorry for the rant, but I think Beth is more where I am at......... Keeping up the pressure on the medical community to address biological reasons why mental illness might exist and educate and provide options.

[nicklemama]

I agree w/ S &S. Quite frankly, I've been surprised at the number of PANDAS parents willing to throw this mom and her son under the bus on the various boards I read. Many don't want to be associated with mental illness. Last time I checked OCD was considered a mental illness. I feel this story could help by showing what happens when the medical community can't or won't provide proper treatment and refuse to believe infection can cause mental illness.

 

Once upon a time, parents would not be open about their child's epilepsy, as it was considered a form of mental illness. Knowledge is power. Hiding in a closet gets you no where. I'll not hide.

[WorriedDADNMOM]

Mommybee, I would argue(that might be a strong word) that there are far more symptoms to Pandas than just tics and OCD as your post states above. Do the research.

 

I also would contend that untreated severe cases of Pandas "could evolve" into Aspbergers diagnosis or even sociopathic behaviors later in life. Until we backwards in time study enough people like Adam Lanza or other sociopathic people, we can never know for sure. It is not a stretch to say that kids that have emotional issues by age 10, whatever they might be, WILL HAVE mental issues later in life without good and proper intervention.