AO Conference

[MomWithOCDSon]

A question regarding PANDAS and others in the family/clearing the family. What can someone share of Dr. B's take & approach on this matter??

 

Dawn

 

There wasn't anything too specific in that arena addressed. Obviously, because of Lynn Johnson's experience and the fact that they've identified all 3 of her kids with PANDAS, he is pro-family testing to identify sources of strep in the house. I actually asked a question about clearing carriers, of which, thanks to Dr. Trifiletti's presentation, I now believe my DS to be one. Dr. B. (along with Dr. T., who attended Dr. B. presentation and frequently weighed in on the Q&A from the audience, upon Dr. B.'s request), responded "antibiotics."

[Mary M]

Thank you for sharing the wisdom you gleaned.

[JAG10]

LOOK at the symptoms, comorbid conditions and clusters Mom w/OCD Son listed!!!!!!!!!!!!

 

-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%).

This is a HUGE problem for the toddler/preschool/under 5 onset crowd!!!! The range of "within developmental limits" for the symptoms listed for the under 5 kiddos is very broad! Periods of equilibrium and disequilibrium are the norm for this group! If we don't have pediatricians that are constantly on the look out for strep (and how about all those ear infections!)... where's the red flag that isn't going to get brushed off as developmental?

 

I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!!

 

At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

[MomWithOCDSon]

I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!!

 

At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

 

I could not agree with you MORE! My son WAS missed, hence my pen-name; he was diagnosed with OCD at 6, after having battled non-stop ear infections from about 14 months of age until past 3! Our PANDAS diagnosis was hard-fought and remains controversial within our core treatment group (pediatrician, therapist -- psych just came around a few weeks ago!). No problem with any of them handing a 7-year-old Lexapro, but a strep test and/or abx? Have mercy!

[kimballot]

I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!!

 

At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

 

I could not agree with you MORE! My son WAS missed, hence my pen-name; he was diagnosed with OCD at 6, after having battled non-stop ear infections from about 14 months of age until past 3! Our PANDAS diagnosis was hard-fought and remains controversial within our core treatment group (pediatrician, therapist -- psych just came around a few weeks ago!). No problem with any of them handing a 7-year-old Lexapro, but a strep test and/or abx? Have mercy!

 

I do not know why our kids are not given simple, routine tests for infection before being assigned a mental health diagnosis. It seems to me that there should be a good attempt to rule out medical conditions before assigning mental health diagnoses, and insurance companies should not only cover it, they should DEMAND it. It will save them tons of money and save society a great deal of burden in the long run if we can clean up infections and let kids become fully functioning adults! Count us in on the families that were given mental health labels instead being fully evaluated for physical problems.

[kimballot]

oops - double post - deleted

Edited May 31, 2010 by kimballot

[parents4eyes]

xx

Edited July 17, 2010 by parents4eyes

[LNN]

Here're the key "new" points I took from Swedo's talk:

 

-- She believes plasma exchange is the best way to address PANDAS and reach cure/remission;

 

-- She acknowledged that once triggered by strep, subsequent exacerbations could be triggered by viruses and/or other infections that drive immune response

 

-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%).

 

-- She noted a genetic susceptability component to strep, OCD and tic disorders

 

-- There is a parallel trial of azith versus penicillin currently underway

 

-- PEX, she says, reduces antibodies by 90%, hence why it is her first choice for long-term healing

I wanted to add my perceptions on the presentation...

From what I could gather, Dr Swedo talks about pex and IVIG as a treatment/cure for that particular episode. She acknowledges (I think even in the literature) that with another infection/exposure, it could start all over again. I was left with the impression that her focus has been on ending a particular episode, not on "curing" the susceptibility to getting Pandas again. My understanding is that Dr K feels IVIG is a cure long term. I hope he's right.

 

Re: the canary response - she said it made total sense to her that Pandas kids could have a response to exposure (not necessarily full blown infection) to strep or other infectious agents. My understanding from conversations I've had with various doctors is that the immune response when an antigen is detected is to mobilize the entire army. Initially, the intruder's identity isn't known, so the body mobilizes all of its forces. Once the intruder is identified, only those swat team antibodies that already exist, or the T-Cells needed to fight a new enemy, stay on the battle field. The rest of the troops are called back home. So the body moves from a general vigilant response into a specific, targeted response over the course of a few days. In Pandas kids, the Pandas response can be triggered during this general immune mobilization.

 

For anyone who wants to see presentation with some of the same slides Swedo showed at AO, including the % of comorbid symptoms, here's a link to a DAN conference presentation from a few years ago: (you have to scroll down until you find this particular presentation)

Progress and Pitfalls & Notes on PANDAS

http://www.autism.com/danwebcast/video-lis...erence=SanDiego

 

She and Dr Cunningham in their presentation said there do seem to be clusters of outbreaks of Pandas, caused by only a handful of strep strains, and that there's a strong "predisposition" factor - Pandas kids often have relatives with RF and OCD. So she was aware of "clusters" of outbreaks where both the strain and vulnerable families collided. (I thought of SF mom)

 

Re: the study on penicillin and azith - I believe those slides were referencing an old study that she did to show the efficacy of prophylactic abx. I don't think it's a current study. You can see the slides if you go to the DAN presentation listed above.

 

Ok, two final points if you've stuck with me this long...

1. I asked what things we as a grass roots community could do to help move things forward. Dr Swedo felt that we should make sure that kids with other illnesses don't get caught in the Pandas net - that kids mis-diagnosed as Pandas would make the Pandas conversation murky and would obviously do an injustice to the kids.

 

2. Someone brought up the subject of the outdated NIMH web page. She nodded in agreement and said her department was responsible for the content of the page but had no authority to make updates. That belonged with a public communications department. But she said we could send emails and she'd use that them to support her case to make changes. The email she'd like us to use is:

OCDNIMH@intra.nimh.nih.gov

 

Put "Pandas Webpage Update" or something similar in the message header, as this is also the email address being used to recruit study participants in an autism/ocd study. Initially, she was going to have us email her directly, but when I said I hoped she'd get hundreds of emails, she changed her mind and said to use this one. So just be sure to put something in the header that separates your email and ask that it be forwarded to Dr Swedo's attention.

Edited June 1, 2010 by LLM

[laurenjohnsonsmom]

That was a topic I brought up during the think tank and Swedo was absolutley in agreement in the importance of diagnosing and erradicating step from the household. I know some PANDAS doctors aren't so viligant regarding thus but it is an important step in the treatment of this disease. Dr. Bouboulis has always addressed this so he had nothing new to add to the topic that he isn't already doing...

 

 

A question regarding PANDAS and others in the family/clearing the family. What can someone share of Dr. B's take & approach on this matter??

 

Dawn

[EAMom]

No problem with any of them handing a 7-year-old Lexapro, but a strep test and/or abx? Have mercy!

 

That was exactly our experience when our dd was 7....if you add on ativan and klonopin to the lexapro.

 

[mama2alex]

A HUGE thank you to the moms who presented and represented the rest of us in speaking to the doctors! Laura, Lynn, Beth Maloney - hope I didn't miss anyone - thank you for all your hard work on this!

[tpotter]

I do not know why our kids are not given simple, routine tests for infection before being assigned a mental health diagnosis. It seems to me that there should be a good attempt to rule out medical conditions before assigning mental health diagnoses, and insurance companies should not only cover it, they should DEMAND it. It will save them tons of money and save society a great deal of burden in the long run if we can clean up infections and let kids become fully functioning adults! Count us in on the families that were given mental health labels instead being fully evaluated for physical problems.

 

 

I think you've hit on the key to all this. Get the insurance companies onboard!!!! Right now, they are fighting us (some more than others), because they don't understand how it will save them money in the long run. BUT, if we all bombard them with info on how it will save them MONEY....

[MomWithOCDSon]

I do not know why our kids are not given simple, routine tests for infection before being assigned a mental health diagnosis. It seems to me that there should be a good attempt to rule out medical conditions before assigning mental health diagnoses, and insurance companies should not only cover it, they should DEMAND it. It will save them tons of money and save society a great deal of burden in the long run if we can clean up infections and let kids become fully functioning adults! Count us in on the families that were given mental health labels instead being fully evaluated for physical problems.

 

I think you've hit on the key to all this. Get the insurance companies onboard!!!! Right now, they are fighting us (some more than others), because they don't understand how it will save them money in the long run. BUT, if we all bombard them with info on how it will save them MONEY....

 

As for the first note, our psych told us that "OCD is actually one of the best understood and most studied psychiatric conditions of the 20th century," so I think that, when those symptoms seem clear (in our case, DS began the handwashing abruptly in first grade), the medical community has historically felt perfectly comfortable issuing the psych diagnosis, without any concern that they could be wrong. Plus, to be fair, our DS (and perhaps many others, as well?) was not given psych drugs right off the bat. Rather, we were referred to therapy. The drugs came about 16 months later when he had an exacerbation/wax that was too powerful for therapy alone (or, seemingly, the ability of his immune system to "self-rebound" at that point in time) to assist him.

 

So now, we're "muddying the waters" for a lot of medical professionals; they thought they knew what tics or OCD "meant" in terms of a diagnosis, and now we're trying to basically undo/revisit 50 years of "secure" diagnostic history. I don't feel bad for the medical community, but I guess I can understand why some of them are balking. Like the guy who first discovered that stomach ulcers are caused by bacteria rather than "stress," we have some misinformation and long-standing "knowledge" to undo.

 

As for the insurance companies, maybe I'm jaded by personal experience, but I've yet to find a large one that puts its money where it's mouth is when it comes to preventative coverage versus dealing with the "fall-out" when preventative or even non-crisis care is foregone. Somewhere, some actuary has run the numbers and demonstrated, for instance, that for every one person who actually develops colon cancer and will need covered care for the illness, there are 99 who will ask for a colonoscopy at the age of 50 and seek coverage for the preventative diagnostic test, but never actually develop the illness. So, the colonoscopy is considered "routine care," but it is NOT, in our large company coverage, at least, considered "standard of care" as is a pap smear, so it isn't a covered preventative measure! So the company is willing to take the bet that it might have to cover catastrophic illness measures for the one person with the actual cancer, while it saves money by refusing to cover the preventative measure for the other 99. Insurance is about playing the odds, and companies like Aetna, BCBS and Universal have got it down to a science. Until they are compelled by law to make decisions out of conscience, rather than solely finance, I don't believe there will be any real movement there.

[EAMom]

LLM....great info!! Thanks!

Edited May 31, 2010 by EAMom

[thereishope]

If we email the NIMH to encourage and demand an updated PANDAS page, do you have any suggestions of how that should be worded? Use Buster's Fact sheet as an example of what would make us happy?

 

 

 

Here're the key "new" points I took from Swedo's talk:

 

-- She believes plasma exchange is the best way to address PANDAS and reach cure/remission;

 

-- She acknowledged that once triggered by strep, subsequent exacerbations could be triggered by viruses and/or other infections that drive immune response

 

-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%).

 

-- She noted a genetic susceptability component to strep, OCD and tic disorders

 

-- There is a parallel trial of azith versus penicillin currently underway

 

-- PEX, she says, reduces antibodies by 90%, hence why it is her first choice for long-term healing

 

There was a morning meeting among the presenters where some of these things came up, so I wanted to add my perceptions...

From what I could gather, Dr Swedo talks about pex and IVIG as a treatment/cure for that particular episode. She acknowledged that with another infection/exposure, it could start all over again. There wasn't time to really get into this. But I was left with the impression that her focus has been on ending a particular episode, not on "curing" the susceptibility to getting Pandas again. My understanding is that Dr K feels IVIG is a cure long term. I hope he's right. But I don't know that Swedo has focused on the long term. So when she talks about cure, I think her focus has been on the short term, from a research perspective.

 

She does have a personal preference for pex as a cure for that episode. She feels that since there's no external human blood product involved, there's one less risk factor. But she does say there's certainly risk and shouldn't be entered into lightly. In her studies, they did pex for 5 consecutive days (not the 3 currently done at Georgetown). So the 90% removal of antibodies may be somewhat lower in current treatments. And I clarified a misunderstanding I had - she did not do true plasma exchange in her studies (pheresis followed by IVIG). She did the same type of pheresis (dialysis only) that's being done today.

 

Re: the canary response - she said it made total sense to her that Pandas kids could have a response to exposure (not necessarily full blown infection) to strep or other infectious agents. The immune response when an antigen is detected is to mobilize the entire army. Initially, the intruder's identity isn't known, so the body mobilizes all of its forces. Once the intruder is identified, only those swat team antibodies that already exist, or the T-Cells needed to fight a new enemy, stay on the battle field. The rest of the troops are called back home. So the body moves from a general vigilant response into a specific, targeted response over the course of a few days. In Pandas kids, the Pandas response can be triggered during this general immune mobilization.

 

For anyone who wants to see presentation with some of the same slides Swedo showed at AO, including the % of comorbid symptoms, here's a link to a DAN conference presentation from a few years ago: (you have to scroll down until you find this particular presentation)

Progress and Pitfalls & Notes on PANDAS

http://www.autism.com/danwebcast/video-lis...erence=SanDiego

 

She said there do seem to be clusters of outbreaks of Pandas, caused by only a handful of strep strains, and that there's a strong "predisposition" factor - Pandas kids often have relatives with RF and OCD. So she was aware of "clusters" of outbreaks where both the strain and vulnerable families collided. (I thought of SF mom)

 

Re: the study on penicillin and azith - I believe those slides were referencing an old study that she did to show the efficacy of prophylactic abx. I don't think it's a current study. You can see the slides if you go to the DAN presentation listed above.

 

Ok, two final points if you've stuck with me this long...

1. We talked about what things we as a grass roots community could do to help move things forward. Her answer was that we should make sure that kids with other illnesses don't get caught in the Pandas net - that she understood how parents want to get there kids healthy and it's natural to hope that your kid might have Pandas instead of something else because it comes with the hope you'll get them back to baseline. But kids mis-diagnosed as Pandas would make the Pandas conversation murky and would obviously do an injustice to the kids. She felt Dr Cunningham's test would be proven to be a very good diagnostic tool once the current study was published. And she felt very strongly that only one treatment of IVIG or pex should be needed to cure a true Pandas child - but again - she was speaking in terms of cure for that particular episode and she was thinking in terms of high-dose IVIG (If I understood her correctly). She understands that subsequent exposures can negate the "cure".

 

2. Someone brought up the subject of the outdated NIMH web page. She nodded in agreement and said her department was responsible for the content of the page but had no authority to make updates. That belonged with a public communications department. But she said we could send emails and she'd use that them to support her case to make changes. The email she'd like us to use is:

OCDNIMH@intra.nimh.nih.gov

 

Put "Pandas Webpage Update" or something similar in the message header, as this is also the email address being used to recruit study participants in an autism/ocd study. Initially, she was going to have us email her directly, but when I said I hoped she'd get hundreds of emails, she changed her mind and said to use this one. So just be sure to put something in the header that separates your email and ask that it be forwarded to Dr Swedo's attention.