Interesting perspective from Beth Maloney

[Wombat140]

Would just like to be a bit cross about apparently irrelevant appearance of Asperger's syndrome in the above sentence. Asperger's has nothing to do with either violence or sociopathy that I ever heard (and trust me, I remember what I read, I'm an Aspie :-) ).

 

Fair point though, apart from that - we don't really know. Apart from anything else, the strain of living with the other symptoms of PANDAS might well be enough to drive anyone crazy... that's something they say about Asperger's too; people with Asperger's have a higher rate of most mental illnesses, but nobody's sure whether that's just because they have harder lives than most people.

[WorriedDADNMOM]

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?

 

I would point back to my original post. How do we know these are not brain infections???? If you google "brain infection", and just about every other type of viral or bacterial infection, there is so much overlap in so many diseases.

 

Could this all be just one in the same ....... an individual immune response to different etiologies???. I think we do ourselves a disservice when we argue about the semantics and verbage and proof with "Science" of what is wrong. I think the med community does this quite frankly way too much already.....thus the situation pandas is in........... let alone EVERY OTHER mental diagnosis is not even talked about a viral or bacterial infection as a causative agent.

 

Do I really care if Pandas is anti-basal ganglian antibodies attacking the brain and causing neurological inflammation or if it is chronic infection causing wide spread bodily infection? I am sorry, but I don't. I just want my kiddos well and to have the best chance to be healthy and succeed. Nothing more and definitely nothing less.

 

I am not trying to argue, just saying we need to keep it simple and demand better care.

[WorriedDADNMOM]

Would just like to be a bit cross about apparently irrelevant appearance of Asperger's syndrome in the above sentence. Asperger's has nothing to do with either violence or sociopathy that I ever heard (and trust me, I remember what I read, I'm an Aspie :-) ).

 

Fair point though, apart from that - we don't really know. Apart from anything else, the strain of living with the other symptoms of PANDAS might well be enough to drive anyone crazy... that's something they say about Asperger's too; people with Asperger's have a higher rate of most mental illnesses, but nobody's sure whether that's just because they have harder lives than most people.

Wombat, I assume you are talking about me and my reference to Aspbergers and Sociopathic behaviors. It is never irrelevant. Both are anti-social behaviors. It was not meant to insult, only to point out Pandas is primarily an early diagnosis before puberty. And if left untreated what might later happen with an individual. I would say violence during pandas exacerbation with a kid say under 10 yrs old would/could go under the radar and be quite different than say an episode of violence in someone going thru puberty or into early adulthood. The point I was trying to make is: If any mental disease or anti-social behavior is exhibited, a biomedical reason should be looked at----fast. First and foremost, bacterial or viral infections. Adam Lanza had a Aspie diagnosis..........what happened from ages 1 or 2 to 20 when he shot up his old school. That is the only parallel I was trying to draw.

 

***********Also, I would bet my life that I could have gotten an Aspie dx for my daughter from main stream docs. I was too ignorant what any form of ASD was. Looking back, I was probably living with it. But going to a DAN doc and with the treatment of infections and supplementation, my dd is thriving, is healthier and a ton happier. Is she perfect and not have any of the Aspie anti-social rigid, rituals and restricted intrest, no.....BUT she has improved a ton. So it is with great respect for you and no ill will or intentions were meant in the initial post or this one. I am sorry you felt cross.

Edited June 4, 2013 by WorriedDADNMOM

[peglem]

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.

Yeah-what she said!

[MomWithOCDSon]

I'll just say upfront that I'm a little hesitant to join this fray in any detail, as it's clear that people have some very strong views and feelings; however, I do feel as though some things need to be said, and I've never been one to keep my mouth shut, even when it might be advisable.

 

I have no desire to throw this mom or her son "under the bus." And I am probably as certain as anyone on this board that most, if not all, "mental illness" has its roots in a physical medical issue, whether it's tied to infection or inflammation or methylation, or genetics, or a combination of one or more of these. Therefore, I am every bit as anxious as anyone else to see the medical and mental health communities get their "stuff" together and start looking for root causes, rather than just treating the symptoms or the resulting behaviors, sharing information and research, and ceasing this ridiculous territorial fight over what is "mental" and what is "medical".

 

I am also eternally grateful to Beth Maloney and everyone else who has worked tirelessly to inform, educate and advocate for the PANDAS/PANS community. I owe Beth a personal debt of gratitude because her book was what brought us to PANDAS to begin with, so there's no animosity here in that respect.

 

That being said . . . I truly don't think it is in anyone's best interest -- not these kids, not their parents or families, not our kids or our families -- to throw the term "PANDAS/PANS" out there in the face of these sorts of horrific events. Our childrens' illness is already grossly misunderstood, so the idea that members of the general public or the medical community who are, at this point in time, dismissive of PANDAS/PANS as a legitimate illness, would have "their eyes opened" by linking this boy or Adam Lanza to PANDAS/PANS is, I fear, a misdirected expectation at best, and quite likely detrimental to our best attempts at educating the public and medical professionals at worst.

 

Again, these two particular events/persons that have been cited in this thread were most definitely suffering from illness, and the boy who still lives needs help. Perhaps PANDAS is part of the mix, but as those of us with older kids who have suffered for an extended period well know, the microbe and its mischief are only a part of the puzzle. Without intensive and lengthy therapy, my PANDAS son would quite likely still be stymied mightily by OCD because those coping behaviors become "normal" for him, because it can become habit. So pumping him full of abx or IVIG alone would not have led to the success he's experienced. There's more involved in the illness and the healing, as I think we all know.

 

But throwing Aspberger's, PANDAS, PANS, etc. out there like spaghetti against a wall isn't really shedding light or spurring on research or enlightenment . . . it's just giving the folks who already dismiss or misunderstand more fodder for confusion and/or turning their collective backs on us and our kids. And lumping extreme acts of premeditated violence like these in with any of the "labels" like Asperger's, PANDAS, PANS -- I'm sorry, I have to say I feel that it is irresponsible. We don't know what was in these boys' minds, we don't know what kind of help they were truly being given or what was being withheld, either out of ignorance or lack of access. And too many of our PANDAS kids are absolutely not capable of even contemplating such violence, let alone committing it. But the general public doesn't know that, and likely many medical practitioners don't know that, either. So why would any of us want to plant that seed?! To get attention?! Isn't that a little like the kid who misbehaves to get attention, even if it's negative attention, because any attention is better than no attention?! I truly think we can be more discriminating than that.

 

Help everyone, yes! Get the word out about causal links between infection/medical illness and mental illness, absolutely! Drive the demand for research in this regard, heck yes! But I think we need to show some restraint and, for lack of a better term, some "global responsibility" in the process.

 

I've got my umbrella at the ready for the tomatoes . . .

Edited June 4, 2013 by MomWithOCDSon

[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?

I would point back to my original post. How do we know these are not brain infections???? If you google "brain infection", and just about every other type of viral or bacterial infection, there is so much overlap in so many diseases.

 

Could this all be just one in the same ....... an individual immune response to different etiologies???. I think we do ourselves a disservice when we argue about the semantics and verbage and proof with "Science" of what is wrong. I think the med community does this quite frankly way too much already.....thus the situation pandas is in........... let alone EVERY OTHER mental diagnosis is not even talked about a viral or bacterial infection as a causative agent.

 

Do I really care if Pandas is anti-basal ganglian antibodies attacking the brain and causing neurological inflammation or if it is chronic infection causing wide spread bodily infection? I am sorry, but I don't. I just want my kiddos well and to have the best chance to be healthy and succeed. Nothing more and definitely nothing less.

 

I am not trying to argue, just saying we need to keep it simple and demand better care.

I was trying to point out that by definition,

PANDAS is autoimmune.. NOT a brain infection.

I was not alluding to this boy, when I wrote that "an infection is not the problem here".

As a parent of one of the most severe kids affected (from what I have read here), who was brought back from the brink by pex and steroids, the autoimmune component must not be glossed over.

I also have little doubt that severe untreated PANS could drive a person to unimaginable acts.

I do also agree with you, that these are all individual responses to different etiologies. I honestly think most of here have kids with different, though similar appearing disorders.

[T_Mom]

Personally -- I am glad to see this thread, and I hope it lights a fire under every one of us to do more to get the word out on the crippling nature of this horrible nightmare of an illness.

 

We have no idea about the story behind this family's experience--if diagnosed correctly or not.

 

Still, there is no doubt that PANDAS triggers OCD -- and there is no doubt that OCD can end up in uncontrollable raging if the rituals are interrupted--

Our d has been that PANDAS child. With OCD morphing into what could be seen as Obstinate Defiant Disorder.

(Oh, and yes, she did a 180 in all behaviors 2 years ago with IVIG and antibiotics, go figure...)

 

I am glad that some have never had to watch the transformation in their PANDAS child, I pray you don't have to, ever--

but it is a reality for many PANS - PANDAS children that Out-of-control OCD can lead to raging when they are unable to complete the OCD rituals.

Believe me, it is not pretty.

 

It goes without saying, we need to get the word out about PANS so that suffering children (ours and others) are able to GET THE TREATMENT they so desperately need. That is where our efforts need to be --

 

-the severity of the reaction in a PANDAS child can be devastating and it may be "internalizing" or "externalizing" in nature.

Edited June 5, 2013 by T.Mom

[peglem]

I'll just say upfront that I'm a little hesitant to join this fray in any detail, as it's clear that people have some very strong views and feelings; however, I do feel as though some things need to be said, and I've never been one to keep my mouth shut, even when it might be advisable.

 

I have no desire to throw this mom or her son "under the bus." And I am probably as certain as anyone on this board that most, if not all, "mental illness" has its roots in a physical medical issue, whether it's tied to infection or inflammation or methylation, or genetics, or a combination of one or more of these. Therefore, I am every bit as anxious as anyone else to see the medical and mental health communities get their "stuff" together and start looking for root causes, rather than just treating the symptoms or the resulting behaviors, sharing information and research, and ceasing this ridiculous territorial fight over what is "mental" and what is "medical".

 

I am also eternally grateful to Beth Maloney and everyone else who has worked tirelessly to inform, educate and advocate for the PANDAS/PANS community. I owe Beth a personal debt of gratitude because her book was what brought us to PANDAS to begin with, so there's no animosity here in that respect.

 

That being said . . . I truly don't think it is in anyone's best interest -- not these kids, not their parents or families, not our kids or our families -- to throw the term "PANDAS/PANS" out there in the face of these sorts of horrific events. Our childrens' illness is already grossly misunderstood, so the idea that members of the general public or the medical community who are, at this point in time, dismissive of PANDAS/PANS as a legitimate illness, would have "their eyes opened" by linking this boy or Adam Lanza to PANDAS/PANS is, I fear, a misdirected expectation at best, and quite likely detrimental to our best attempts at educating the public and medical professionals at worst.

 

Again, these two particular events/persons that have been cited in this thread were most definitely suffering from illness, and the boy who still lives needs help. Perhaps PANDAS is part of the mix, but as those of us with older kids who have suffered for an extended period well know, the microbe and its mischief are only a part of the puzzle. Without intensive and lengthy therapy, my PANDAS son would quite likely still be stymied mightily by OCD because those coping behaviors become "normal" for him, because it can become habit. So pumping him full of abx or IVIG alone would not have led to the success he's experienced. There's more involved in the illness and the healing, as I think we all know.

 

But throwing Aspberger's, PANDAS, PANS, etc. out there like spaghetti against a wall isn't really shedding light or spurring on research or enlightenment . . . it's just giving the folks who already dismiss or misunderstand more fodder for confusion and/or turning their collective backs on us and our kids. And lumping extreme acts of premeditated violence like these in with any of the "labels" like Asperger's, PANDAS, PANS -- I'm sorry, I have to say I feel that it is irresponsible. We don't know what was in these boys' minds, we don't know what kind of help they were truly being given or what was being withheld, either out of ignorance or lack of access. And too many of our PANDAS kids are absolutely not capable of even contemplating such violence, let alone committing it. But the general public doesn't know that, and likely many medical practitioners don't know that, either. So why would any of us want to plant that seed?! To get attention?! Isn't that a little like the kid who misbehaves to get attention, even if it's negative attention, because any attention is better than no attention?! I truly think we can be more discriminating than that.

 

Help everyone, yes! Get the word out about causal links between infection/medical illness and mental illness, absolutely! Drive the demand for research in this regard, heck yes! But I think we need to show some restraint and, for lack of a better term, some "global responsibility" in the process.

 

I've got my umbrella at the ready for the tomatoes . . .

Well, I suck at figuring out the politics! But, like it or not- this case has already been linked to PANDAS in the media. So how do we as a community deal with that? We can howl-"No, not PANDAS! How dare you misrepresent us!" Which I do find completely understandable. Or maybe we could try to use this to drive the point home that this disorder needs to be taken seriously-that the consequences of not treating (or worse, in this case MIStreating) are dire. Whenever these incidences of mentally ill youngsters gone wildly homicidal occur there is TONS of frenzy over "How did this happen and what can we do to prevent future incidences?" We need more gun laws....we need more psych evals.... Maybe we finally get the chance to examine the medical causes behind the mental disorders and highlight the futility of excessive use of psychiatric medication.

[mommybee]

I have read the peer reviewed research. It provides clear diagnostic criteria for PANDAS and its symptoms. Sociopathy isn't among them.

 

The media circus that Beth is trying to create isn't going to fund additional research and her suggestion that the Newtowne incident was PANDAS driven is nothing short of irresponsible.

 

Beth isn't a medical authority, but she's a heck of a publicist.

 

She has a conflict of interest.

 

Media buzz = book sales

Edited June 5, 2013 by mommybee

[dcmom]

I have been thinking about how to respond to this post, and have been wondering if I should even get involved.

 

Thank you (as usual) to Momwithocdson, Nancy, for taking the words out of my mouth, making them a little more succinct and eloquent, and taking the time to post a well reasoned and thought out opinion. I am in total agreement with everything that you stated.

 

I also agree with powpow- pandas is not a "brain infection" it is an autoimmune response to illness. There is a major difference, it is not semantics.

 

I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for- I think this is very typical of pandas. I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.

[WorriedDADNMOM]

MomWithOCDSon----First and foremost, no tomatoes here, for sure. This board literally was the first thing I found when I googled when my dd6 came down with tics and It has been a life saver. So thank YOU and EVERYONE for even giving a rip and posting on here and being a part of the dialog. The exchange of ideas, treatment, doc info, etc...... has been HUGE.

 

We all have very different journys and history, .....My DD6 now 9.....She previously was bi-polarish, had unfounded irrational fears, sep anx, oppositionally defiant terribly and upon tics coming had suicidal thoughts just previous to the tics----all this b4 6yo. During subsequent exacerbation, it was truely scary. She was explosive in tantrums and I am sure she would have been dx an Aspie based on EVERY symptom that describes it. All this in a stable loving home that I am absolutely confident in. That being said, I read your comments in your profile to better understand your history. You and your story are quite different. With very little help early in the game and while I know little about OCD, I think I get how dispruptive to a familiy it could be. But I also understand, as do you, the lack of response from the med community.

 

The point of my posts is to push a few ideas:

1) Even my own three biological kids with a milk allergy presented with three diff symptoms 1) Severe eczema 2) Projectile vomiting and mild colic 3) severe colic and inability to nurse.

2) The same would probably apply and it did in my case as it pertains to infections with known pathogens---ours were MP, Strep and EBV. All three kiddos had different responses and symptoms that varied. OCD was the least obvious although present, but not in all three.

3) I have my own familal history as it pertains to mental issues for the last 40+ years in addition to auto-immune issues. So the link between neuro-immune stuff for me is quite apparent and I get it.

4) Everyone has a very individual immune system and response and are exposed to varying infection and co-infections.

5) MAIN POINT---THE MEDICAL COMMUNITY SHOULD LOOK FIRST FOR INFECTIOUS TRIGGERS AND TREAT ACCORDINGLY upon ANY onset of ANY mental issues presentation.

6) MAIN POINT #2----WE AS INDIVIDUALS, FIGURE OUT OUR OWN FAMILY HISTORIES AND APPLY THE KNOWLEDGE AND ADVOCATE FOR OUR KIDS.

 

So, I say all that to say, much the same as many people after Newtown,CT where the shooter was dx'd with Aspbergers, there needs to be a MAJOR redo on how we are addressing mental illness............in ANY form.

 

The only "offense" taken(and I am thick skinned) is that we "should not lump Aspbergers with pandas pans or anything else". My problem with that is there are enough medical personell doing this and worse. Every mental diagnosis has so much strong overlap to other mental illness. They are these neat little checked boxes next to all the presentations and behaviors, thus, you have x,y or z, or many times, frigging ALL three!!!!! No biological or medical test done, just calling/naming the mental illness/deficit after it's symptoms or founder and giving a diagnosis.There are doctors on record that say pandas is not supported by enough data. That "How can we actually be serious about linking a sore throat with a mental issues like OCD or bad behavior. You know the answer as do I and probably everyone on here. But-----These types of willful disregard, for whatever reason, are not helpful to our kids, families and by extension the entire culture. So demanding that the stigma with mental illness be banished to the dust heap of history with a pragmatic, thoughtful bio-medical approach to mental and physical wellness is warranted. I don't know, maybe I am living a pipe dream.

[T_Mom]

 

...

PANDAS is autoimmune.. ... the autoimmune component must not be glossed over.

I also have little doubt that severe untreated PANS could drive a person to unimaginable acts.

 

...I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for-... I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.

 

I so agree -- with both of these statements.

It can be "in the moment" OCD raging, and yes, long term with no treatment may have devastating effects.

[Kathy4Him]

No tomatoes from me Nancy just an AMEN! While my heart hurts for this mom and her son, I was troubled from the start over the hubbub on FB linking pandas to such violence as my son is 24 yrs old and I would NOT want anyone to look at his diagnosis and think he could be capable of such a horrific act. My son has never been violent, never had rages, love the Lord, smiles all the time even while suffering thru this illness. On the day of his 2nd liver biopsy and heart cath, the chief of hepatology at the hospital told me, he went in smiling and came out smiling. With that said, we never allowed violent video games, tv shows or movies in our home...he never asked for them either.

[WorriedDADNMOM]

I have been thinking about how to respond to this post, and have been wondering if I should even get involved.

 

Thank you (as usual) to Momwithocdson, Nancy, for taking the words out of my mouth, making them a little more succinct and eloquent, and taking the time to post a well reasoned and thought out opinion. I am in total agreement with everything that you stated.

 

I also agree with powpow- pandas is not a "brain infection" it is an autoimmune response to illness. There is a major difference, it is not semantics.

 

I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for- I think this is very typical of pandas. I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.

Well my uneducated self asks this question then if brain infection is not the same as auto immunity as you all point out. It is still infection that is affecting the brain.

What came first? 1) the infection 2) the auto immune response against the brain due to the specific pathogen 3) the immune dysregulation from previous entrenched infections that leads to the auto immunity.

 

http://www.epidemicanswers.org/epidemic/biological-dysfunction/immune-dysregulation/#

 

Quite honestly, I don't care about the specifics of where we are at in the pathogen/immune response cascade to full blown Pandas. Maybe I should, but I still think they are really one in the same at the end result of neurological inflammation resulting in the we all experience.

 

Not trying to fight with the entire board, but I am trying to make the broader points and explain my rational (or irrational ) to all of this mess.

 

Again, thanks to all the people continuing the dialog and helping all the Newbies.

[Kathy4Him]

I will tell my Drs theory. He is certain this is autoimmune in our son due to testing but told me a few nights ago: "I believe he has a bacterial infection in his brain" So who knows, I am like worrieddadnmom, don't really care about what word he uses at this point, just want my son to get better. I know it helps to put a name to it, but so far, dr has not been able to get specific about cause even after multiple blood/urine/scans/mris/and invasive tests.

 

I have been thinking about how to respond to this post, and have been wondering if I should even get involved.

 

Thank you (as usual) to Momwithocdson, Nancy, for taking the words out of my mouth, making them a little more succinct and eloquent, and taking the time to post a well reasoned and thought out opinion. I am in total agreement with everything that you stated.

 

I also agree with powpow- pandas is not a "brain infection" it is an autoimmune response to illness. There is a major difference, it is not semantics.

 

I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for- I think this is very typical of pandas. I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.

Well my uneducated self asks this question then if brain infection is not the same as auto immunity as you all point out. It is still infection that is affecting the brain.

What came first? 1) the infection 2) the auto immune response against the brain due to the specific pathogen 3) the immune dysregulation from previous entrenched infections that leads to the auto immunity.

 

http://www.epidemicanswers.org/epidemic/biological-dysfunction/immune-dysregulation/#

 

Quite honestly, I don't care about the specifics of where we are at in the pathogen/immune response cascade to full blown Pandas. Maybe I should, but I still think they are really one in the same at the end result of neurological inflammation resulting in the ###### we all experience.

 

Not trying to fight with the entire board, but I am trying to make the broader points and explain my rational (or irrational ) to all of this mess.

 

Again, thanks to all the people continuing the dialog and helping all the Newbies.