Teen accused bomb plot, rare form OCD/PANDAS

[Fixit]

this family will need support!

 

http://www.cnn.com/2013/05/28/justice/oregon-teen-bomb-plot/index.html?hpt=hp_t2

 

[LNN]

Why is Pandas Network saying there is no clear diagnostic criteria??

[MomWithOCDSon]

I am NOT a medical or psychiatric professional, but from knowing my own child's PANDAS and having been connected, through all of the stories and experiences noted here on the forum over the last 3+ years, I have a very real concern that 1) this child's issue(s) are not restricted to PANDAS, and 2) that an attempt to corral this level of premeditated homicidal thinking/action into a PANDAS diagnosis does not serve our kids or the PANDAS/PANS community well.

 

I'm all for supporting this family, but who among us has seen our children be capable of such organized, premeditated behavior during a PANDAS episode?! My son couldn't plan for himself into the next HOUR, let alone plan and then execute the building, storing and utilization of explosives over an extended time period! I know our kids can rage and be horribly destructive in the moment during PANDAS exacerbations, but the executive functioning is so disorganized and emotionally labile, that I cannot see the link between what this boy did and what I know of this particular illness.

 

I'm sorry, but I fear there is at least something additional afoot here . . . Just MHO.

Edited May 28, 2013 by MomWithOCDSon

[Kathy4Him]

Nancy, I am thinking the same thing. My son who is now 24 has NEVER been violent, never had the rages...except the time Dr put him on zyprexa and he tried to throw his cell phone, took him off that quickly. He is the most non violent child, always smiling does not even curse...ever. I hate that anyone would try to characterize a pandas child as violent and capable of such violent acts. I always wonder about tv shows, movies, and video games in these cases, among other things. With that being said, my heart and prayers go out for the mom who has to journey thru this nightmare. So sad!

[EAMom]

Yes, I agree with Kathy N, this may or may not be simple untreated PANDAS. More likely it's PANDAS treated incorrectly with psych drugs that just added problems. It's so easy for PANDAS kids to get a slew of psyc drugs rx'd, so difficult to get a proper workup and treatment (long term antibiotics, IVIG).

 

Who knows how many undiagnosed/misdiagnosed PANDAS kids are out in the system commiting violent acts (esp. with the unpredictable mix of psych drugs on board). Maybe this IS an atypical (or even typical) presentation of chronic untreated PANDAS in a teen boy. I think it is very possible. Heck, it's also very possible he has other complicating factors (Lyme or other tick borne infections).

 

That said, we don't KNOW it's PANDAS. From what I've heard (which may be wrong) the only "evidence" of PANDAS is a single elevated ASO. We don't know anything more, and we all know a single elevated ASO does not make a PANDAS diagnosis.

 

Really, what this kid needs is a Cunningham test. If his lawyer was smart, and it was positive, that is something they could use in his defense.

 

BTW, my dd was violent (rages, screaming, never hurt anybody but she was only 7) when PANDAS was full blown (even before Lexapro). Most of her symptoms were self-destructive (anorexia, depression, considered herself a "bad person") but I see no reason why it couldn't at some point have been directed outward if left untreated.

 

@LLM I wondered the same thing. I can't help but think PANDAS network was misunderstood or misquoted. It does not sound like something they would say.

Edited May 28, 2013 by EAMom

[MomWithOCDSon]

BTW, my dd was violent (rages, screaming, never hurt anybody but she was only 7) when PANDAS was full blown (even before Lexapro). Most of her symptoms were self-destructive (anorexia, depression, considered herself a "bad person") but I see no reason why it couldn't at some point have been directed outward if left untreated.

 

I hear you and KathyN on the violence, whether the rages preceded or came as a result of the wrong medications (or too much of even the "right" ones).

 

What I can't wrap my head around in the context of PANDAS, however, is the premediated, planned nature of this boy's behavior. Anger? Rage? Lashing out in the heat of the moment? Sure! But plotting homicidal destruction on such a grand scale? That's something else entirely, and nothing I've ever before heard of in association with PANDAS behavior, or even OCD. More typically, OCD turns a person's destructiveness inward, rather than outward.

 

I guess my real concern . . . selfishly . . . is that putting a homicidal "face" on this illness does a disservice to the vast number of kids suffering with it who have never, and would never, even contemplate such destruction of others. It's bad enough they're misunderstood to the extent they are; if public opinion sways to considering them "dangerous to others," we'll have a whole 'nother can of worms to deal with.

 

I think they should pursue every possible avenue of diagnosis and treatment for this boy, including PANDAS. I just don't think, given what we know, this level of destructive, premeditated behavior is rightfully laid entirely at PANDAS feet, is all.

Edited May 28, 2013 by MomWithOCDSon

[airial95]

I'm going to offer a differing opinion. My severe PANDA boy is only 5 now, but my husband and I have often discussed that when in a flare, our biggest fear for our son is that he will end up being the next "Columbine kid". Even at a young age, it's something that we have feared is possible for him. As for the meticulous planning, absolutely could be OCD. My son will work out topics he is interested down to the most minor insignificant minutiae when he is in the throws of a flare (of course, not about something like this). The real unknown is would they actually carry it out - or is the OCD satisfied by just the planning? If you've never read the book "Triggered" - I recommend it. It's by a college kid who has pure "O" OCD - just obsessional thoughts, and many of them are violent. It provides insight into this type of OCD.

 

That being said, we have been treating PANDAS for 3 years now, he just had his first IVIG and is pretty much at 100% (a few blips the last few days with 2 loose teeth, but that's to be expected.)

 

If we hadn't had treatment early like we did - he would likely be institutionalized now. And yes, when healthy, my son is the most non-violent, easy going, empathetic kid you will ever know. When he flares, a switch flips - and you can see it in his eyes that he's just gone. It's scary when it happens now, at 5 years old, I'm terrified of what that is going to look like as a teenager.

 

It's hard for me to acknowledge that we have carried these fears for our own child, but it's the truth. We no longer have those fears as badly now that he's responding so well to treatment, but they were very real.

 

It's unfortunate that something like this is going to be associated with PANDAS now (like the Newtown/Aspberger's connection) - but we are using this to open a dialogue with our PANDAS kids (ages 5 and 7). We are using it as an opportunity to reinforce the therapy techniques that they have been using to help with the anxiety (and for my son, the rages), and to highlight that while PANDAS may be the reason they act out and do things that they really can't easily control - there are still very real consequences to those actions, as this young man is finding out.

 

We are also going to try to use this as a stepping stone to try to get local coverage of PANDAS from our local TV/News. Always looking for the silver lining.

Edited May 28, 2013 by airial95

[tpotter]

I also know several PANS kids who have had very violent, confrontational behavior when in a flareup, and I have witnessed several such episodes. And, like airial95 mentioned, there are forms of OCD that come down to very meticulous planning. DS at one point in high school, decided he was going to make sure that everyone knew that God didn't exist. He printed out hundreds (unbeknownst to anyone) flyers, and would have posted them all over the school (and I'm sure would have gotten into trouble), if he hadn't told me, and I called the school. Granted that's not homicidal, but what if that "I'm going to print out and put up a bunch of flyers, and then do the next step, etc., was just a few steps further.

 

Now, what if the PANS was being treated with psychotropics? When DS was put on psychotropics, he became horrendously violent...swing a metal pipe at my head one time. So, yes, unfortunately, I do believe this could be associated, and until we have all the information, we may never know.

[beeskneesmommy]

I have been increasingly disturbed at the tone of some of the news pieces covered regarding PANDAS over the past several months. Clearly, this is an extreme situation. However, several other articles that I have seen posted accentuate the symptom of aggression and desire to harm others. I am well aware that this is part of the symptomology. However, I would hate to think that those people in the non-PANDAS community get the impression that having PANDAS renders our kids dangerous. I think this is something to watch carefully and make sure that we educate others with clear and balanced understanding of our children.

[EAMom]

@MomwithOCDson

 

"I think they should pursue every possible avenue of diagnosis and treatment for this boy, including PANDAS. I just don't think, given what we know, this level of destructive, premeditated behavior is rightfully laid entirely at PANDAS feet, is all."

 

and here lies the problem. This mom couldn't get a proper workup/treatment before the arrest. Unless he is very lucky, it is highly unlikely he'll get anything close to that now that he has been arrested.

[nicklemama]

My son was violent. No meds involved. Fortunately he was 5-6 hrs old then. I'm with MomwithOCD. I can't imagine my son being able to organize, plan, buy or carry out such anything, even if he had thoughts of it in his mind while in PANS exacerbation.

 

There is more to it. On the other hand, folks need to know this disease needs recognition by the medical community, treatment, doctors getting onboard, research fast tracked and insurance companies paying for treatment.

 

There will be negatives from this press coverage. It's our job to turn that back against them and press for our children's needs.

[LaurenK]

You can be a psychopath and have an illness that affects your brain. The two don't necessarily have to go together.

[emmalily]

May I suggest, as a person with PANDAS who will have to bear the stigma of whatever thist story turns out to be, that we possibly close this discussion/carry it on in private until we know the details of what was really going on in this young man's life?

 

We are jumping to conclusions and it will not help him, or any of us who are non-violent PANDAS-sufferers, to draw too many connections to a dangerous and violent person (mentally ill or not) before we know if they really exist.

 

Please think about those of us who have to live with this disorder. I have already had to ask all of my friends to remain tight-lipped when discussing this news story so as not to draw attention to my having PANDAS. This is very scary for me, and I imagine you feel the same fear for your children's reputations as well.

 

[mama2alex]

Why is Pandas Network saying there is no clear diagnostic criteria??

 

I don't think they "said" this. If you click the link in this quote, you'll see that the writer went to their website and didn't quote word for word, thereby changing the meaning for those of us who know this topic well.

 

PN's website says: "PANDAS is currently a clinical diagnosis and open to interpretation and subjective observation. There are currently no conclusive diagnostic blood or neurological tests to be relied on."

[dcmom]

I am in agreement with Momwithocdson (nancy) and emma lilly-

 

this is not pandas alone (sorry)-

 

and I think we should shut down further public discussion linking the two.

 

My children, pandas- with no violent thoughts- yes tantrums, but not pre meditated desires to harm anyone, would be devastated if they thought something linked them to such a violent act.

 

it is not that I don't have compassion for this family- it is just that I do not want this type of stigma attached to ocd sufferers. They suffer enough.

Edited May 28, 2013 by dcmom