Interesting perspective from Beth Maloney

[mommybee]

Beth Maloney is responsible for linking of Grand Accord and PANDAS in the media. Why? To raise public awareness. The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television.

 

Yet, we are a sound bite culture. Connecting PANDAS with horrible acts of violence will stigmatize children who have been diagnosed with the disorder and silence their parents.

 

My child is on the back nine. I am no longer in the emotional place that I know some of you are. We were lucky. Antibiotics alone were curritive and we didn't have to address comorbid symptoms separately because there weren't any. In short, my kid was one of the few who actually fit the narrow diagnostic criteria that so many of us would like to see broadened. I had the poster child. Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.) But after this media blitz, I'm going to be very careful about what I say publicly. My child isn't, has never been, and isn't likely to become violent and I won't allow him to be stigmatized. Should he get strep again and develop symptoms, I doubt I will ever again call it PANDAS. Going forward, I shall err on the side of vagary.

 

While she has done much good, I think Beth's efforts this time were ill conceived, if not self-serving.

Edited June 6, 2013 by mommybee

[EAMom]

mommybee,

 

 

 

"Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.)"

 

They never mention names in case studies, which is a bonus. I hope you do it.

[EAMom]

mommybee,

 

"The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television."

 

True...although I would say it's good to ALSO raise awareness among parents in the popular press so they know to google to find out more, and ask the docs. But, the really quick and inaccurate coverage on Grant isn't helpful (aside from the fact we don't actually know if he has PANDAS, although Beth is convinced).

 

This most valuable "publicity" IMHO (for the average parent) would be articles that actually reference the research (eg the recent Walrus article http://thewalrus.ca/a-feverish-debate/ , and Swidey's Boston Globe article http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html ), or even the article in parenting http://www.parents.com/kids/health/other-health-issues/pandas-syndrome/ not these short news casts that can't even give a half accurate picture of a complicated disorder.

 

But I agree, we definitely need peer-reviewed research to convince the doctors (although it seems like there is already quite a bit out there)!

Edited June 5, 2013 by EAMom

[mommybee]

Agreed. Good clear information is hugely helpful The Child Mind piece was another recent good one.

 

RE: the case study, I certainly want to do the right thing and, of course, know that names are never used. We've been so lucky to have had such an uncomplicated presentation and such amazing medical care. I want to give back. But we haven't achieved complete remission of symptoms (though they have been abating at a break-neck pace since as the strep titers have descended). When my child is 100%, I'll make the call. Sadly, I won't be spreading awareness through word of mouth anymore. Beth has effectively muzzled me. I doubt that I'm alone on this.

[peglem]

Beth Maloney is responsible for linking of Grand Accord and PANDAS in the media. Why? To raise public awareness. The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television.

 

Yet, we are a sound bite culture. Connecting PANDAS with horrible acts of violence will stigmatize children who have been diagnosed with the disorder and silence their parents.

 

My child is on the back nine. I am no longer in the emotional place that I know some of you are. We were lucky. Antibiotics alone were curritive and we didn't have to address comorbid separately because there weren't any. In short, my kid was one of the few who actually fit the narrow diagnostic criteria that so many of us would like to see broadened. I had the poster child. Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.) But after this media blitz, I'm going to be very careful about what I say publicly. My child isn't, has never been, and isn't likely to become violent and I won't allow him to be stigmatized. Should he get strep again and develop symptoms, I doubt I will ever again call it PANDAS. Going forward, I shall err on the side of vagary.

 

While she has done much good, I think Beth's efforts this time were ill conceived, if not self-serving.

Just because I disagree with you doesn't mean there is a problem with my logic(or the logic of many people on this board). Media attention CAN result in public outcry. Public outcry can influence politicians- with medical care/insurance coverage being increasingly influenced by government, public outcry could make a difference. Public outcry influences corporations, who are increasingly involved in funding studies. Mentally ill people are already stigmatized by society (crippling OCD is a mental illness, regardless of the cause).

 

I hear you trying to protect your child and I can appreciate that you've fought hard for her. Grant's mother wants to fight for him, too, and this may be a way for her to save him. And my viewpoint is colored by my experiences with my daughter-stigma is not even on the worry radar.

[nicklemama]

I don't agree with you Mommybee. Stigma comes from hiding things and not talking about them. Breast cancer, epilepsy, mental illness, adoption, etc..... All have been or are currently stigmatized. It won't change unless people are brave enough to put it out there without shame. Betty Ford was the catalyst for change when she announced she had breast cancer. I think we all know how that's turned out. Publicizing things gets people talking and pushing for change. Institutions won't change unless we demand it.

 

My son has an illness. I'll not have him ashamed to say it. It's something we talk about and everyone we know knows about. He was adopted. It's no big secret. We don't keep secrets like that. I will fight until my last breath for understanding, proper treatment and insurance coverage PANDAS. I will also educate others in hopes of helping identify other children with PANDAS. My son went a year without diagnosis and I am the one who figured it out from watching Sammy and Beth Maloney on Mystery Diagnosis. Not one doctor we saw ever mentioned even the possibility. I googled after watching that episode and ended up consulting with Dr T.

 

I am grateful to those that went before me. Without them speaking out my son might still be struggling.

 

And by the way, there is nothing wrong with my logic.

[mommybee]

I am grateful for information too. Like you, Niclemama, I figured out that my child had PANDAS and brought it to the attention of our doctors. I also think that public outcry can put pressure on politicians, Peglem.

 

But public outcry doesn't sway the medical community and doesn't fund research. It just doesn't. Publicly linking a disease with symptoms that aren't a part of the disorder undermines the process. It alienates the medical community. Doctors will become less likely to listen to what their patient's mothers are saying. Misinformation is dangerous. Grant Accord's diagnosis is highly speculative. Entirely hearsay. There is simply no peer reviewed research that suggests that PANDAS leads to sociopathy. Not one shred.

 

I do not want my child or his illness associated with symptoms that he doesn't have. I doubt any PANDAS parent does. So if the media is fed misinformation that it reports to the public, I am going to keep quiet about the diagnosis, not because I'm ashamed but because I don't want the people to think that my child is a budding psychopath, when he isn't.

 

I can understand why parents of children who have comorbid conduct disorders might be less worried about this. Nonetheless, it's not in anyone's interest for the parents of children who fall under the strict diagnosis, receive proper treatment and get better, to fall silent. WE are the one's who could be championing the cause if we weren't silenced. After all, WE have the voices the the medical community can hear.

 

I think Beth and her followers have made a mistake on this one and if she continues on this trajectory, sooner or later, people are going to stop listening.

Beth is very smart. I'm sure she will ultimately come to realize that her reputation is at stake and begin to measure her words more carefully. She does not want the medical community to view her as a loose cannon who doles out inaccurate sound bites. And she certainly does not want the handful of PANDAS doctors across the country to stop taking her calls. But they will if she continues in this vein.

Edited June 6, 2013 by mommybee

[PowPow]

I do not necessarily think we (well, me- cannot speak for mommybee) want to hide things.

I just want correct information to be given out.

If you are going to call it PANDAS- it better fit the definition-- or we are all toast, scientifically speaking.
We all use PANDAS here, interchangeably- and we all know what that mean- but to an outsider:

 

PANDAS is specific. If you say PANDAS & there is/was no strep--- you are (in their minds) exaggerating, self-diagnosing, not admitting to mental "illness" whatever.

 

 

Hence, the creation of PANS-- which I like way better- for obvious reasons-one of my most-affected kids did not have strep.

 

everytime one of us (or other parents) goes to a doctor and says- "my kid has PANDAS" and the doctor is on the fence & your kid does NOT have "real" strep- associated PANDAS- you will drive another doc away or at least lose credibility. That is the crux of this to me.

 

I know no one cares about my little semantic argument-- but I think this is SO SO important.

[mommybee]

I agree with you POWWOW. Misinformation is dangerous. PANDAS, by definition, involves strep.

 

Sadly, Beth who is a PR genius, is spreading misinformation. This won't be productive. Sooner or later, she is going to realize her mistake and pull back. Hopefully she will not have alienated too many doctors and patients who understand the difference between PANDAS and the myriad of other issues that can cause conduct disorders. Her book and her media blitz about her son were tremendously helpful. She helped to educate parents who were then able to get treatment for their children who were suffering. But she's gone overboard. Hopefully she'll rein it in before too much damage is done.

 

I don't know whether you noticed or not, but she said that Grant Accord had a strep titer of 950. I wonder what that meant. An ADB or ASO blood titer result immediately following an infection would not, in and of itself, indicate anything other than a recent strep infection. To meet the diagnostic criteria for PANDAS, a temporal relationship must be established between a strep infection and OCD and/or Tourettes. Strep titers are only of diagnostic value when a temporal relationship between rising titers and very specific symptoms exists. Beth knows this. Her mention of Grant Accord's single strep titer result was intended to lend legitimacy to the claim that he had PANDAS. It failed. Instead, like her rant at the beginning of this thread in which she tried to link the Newtown shootings with PANDAS, made clear what she was after. Publicity.

Sad.

Edited June 6, 2013 by mommybee

[kimballot]

I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.

 

My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.

 

I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.

 

Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.

 

I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.

 

Can untreated PANDAS become antisocial behavior? I don't know.

 

I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!

 

I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.

[peglem]

I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.

 

My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.

 

I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.

 

Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.

 

I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.

 

Can untreated PANDAS become antisocial behavior? I don't know.

 

I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!

 

I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.

I so agree! And thank you for sharing what is still probably a painful memory for you. Who diagnosed Grant as a sociopath? He did not blow anybody up. I haven't even seen anything that says he's assaulted anybody. He had an obsession w/ columbine and bombs, even built some bombs. But everybody is treating him as though he carried out an attack.

[nicklemama]

When things are neat and pretty, no ugliness to it, everyone is on board. Join us. We'll support you. We'll write comments at all the online newspaper accounts. We'll send emails to the parents. When its not, "it's not my child". My son had terrible raging from interrupted OCD and untreated PANS. He said terrible things. He was physically aggressive to us. He was 5 yrs old, not 17. This boy Grant has not hurt anyone. He had intrusive thoughts. He wrote plans in a journal. He gathered items for his plans. His mother says he was diagnosed with PANDAS at a clinic.

 

I say there but for the grace of God goes I.

 

Maybe we should start a new forum....one for the neat package of PANDAS and one for the rest of us with kids who are aggressive in exacerbation and have a different trigger. That way, no one will have to associate with us lest their child be stigmatized. I'm not going anywhere, nor am I starting a new forum. Point made.

[dcmom]

I think it is time to let this topic go. We have shared our thoughts. There are many sides here, no one is right, no one has the "moral high ground". We all want to help our kids, and all pandas kids, and no one here has anything but sympathy and understanding for this family either way

[tpotter]

As I've said previously, I know kids who have had severe psychiatric symptoms from PANS. That includes hallucinations, hyper-anxiety, and more. Think "Brain on Fire" (which certainly sounds like one cause of PANS to me.)
I know kids with PANS whose OCD possibly coupled with other things like medication, vaccination, hallucination, etc. makes it not so far-fetched to think they might be able to plan out, such an incident. Unfortunately, not all our kids are perfectly behaved. Anything and everything is possible with this horrible diagnosis.

 

I don't think we need to get personal with individuals who have done a tremendous amount to get the word out. Honestly, I've been on this board for more than 4 years, since before any of the websites were made, since before Beth started getting the word out, etc, etc. And, if it wasn't for each and every one of these people and entities who have done everything they could to get the word out in their own unique way, we wouldn't have much of the research we now have, and so much of the knowledge we now have.