Latitudes Magazine articles and abstracts re PANDAS

[Chemar]

the new issue of Latitudes Magazine Online is just out with quite a bit on PANDAS

 

if you dont already subscribe, it is well worth it as each issue is jam packed with helpful and informative stuff

 

http://www.latitudes.org/membership/1/curissue.html?

[monarchcat]

I hadn't subscribed before, but I think I will. Thanks for the info!

 

the new issue of Latitudes Magazine Online is just out with quite a bit on PANDAS

 

if you dont already subscribe, it is well worth it as each issue is jam packed with helpful and informative stuff

 

http://www.latitudes.org/membership/1/curissue.html?

[Worried_Dad]

Okay, I subscribed and was glad to do it. I am extremely grateful to ACN for providing this wonderful forum for PANDAS parents (and doctors like Dr. T) to share info. It's been a lifesaver for us; without it, our son would probably be in a hospital now.

 

So please don't take this as ingratitude, ACN folks. You've done us all a great service by providing this forum!

 

But... sigh... I eagerly accessed the Latitudes Online magazine to see the PANDAS articles and was deeply dismayed. The 2009 Research Abstracts summary lists many that still question the existence of PANDAS - concluding that it remains "elusive, controversial, unproven" - including articles by prominent PANDAS nonbelievers like Singer and Gilbert who have caused major heartache for PANDAS families on this forum who have sought their help. And yet it does not even mention the most groundbreaking research of all published in 2009, the Columbia University study that essentially re-created PANDAS in a mouse model.

 

Then I follow (with curiosity) the link labeled "NIMH on PANDAS" which is parenthetically dated 2009. This page again contains the (tiring and disappointing) disclaimer that has hampered so many of us as we sought treatment for our children: that PANDAS is "a condition for which diagnosis and treatment remains controversial." And this article - copied from the NIMH FAQ page - may indeed have been updated in 2009 cosmetically, but it mostly contains the same old, out of date, and inaccurate information that has been on the NIMH site for years and has hampered so many of us when seeking treatment. For example, it still states that PANDAS should be treated like any other case of OCD or tics, with psych meds and CBT therapy. We (like so many others on this forum) tried this for our son, repeatedly: not only didn't it help, the meds made things much, much worse. And this NIMH FAQ still asserts that there "isn't enough evidence to recommend the long-term use of antibiotics." What?!? Without "Saving Sammy" and the regimen of long-term, high-dose augmentin XR, my son would still be utterly incapacitated by extreme OCD. Dozens of parents on this forum have chronicled the significant improvements their children experienced on long-term treatment doses of abx... and their decline as soon as those abx were discontinued by docs who relied on the NIMH info cited here!

 

Please accept this as constructive criticism, not an attack on ACN folks who have done wonderful things to support parents and kids with classic OCD, Tourette's, tics, PANDAS, etc. But - after all the battles we and other families have had to fight with healthcare professionals to overcome this kind of stale info on PANDAS - it is disappointing to see the NIMH FAQ simply reproduced verbatim in Latitudes Online, with no context, no critique, no observation of how out of date it is. Heck, the IVIG / PEX section still cites articles that are more than a decade old (1999, 2000) and cautions against risks / side effects that have been reduced dramatically in the past 10 years.

 

I may be overreacting, because this is such a painful subject. Having to "dispute" the NIMH stuff to local docs who use it as gospel and ignore the more recent research, having to spend a full year searching for anyone local who will even try to help our son, makes me pretty sensitive to this topic.

 

Latitudes may be trying to stick to the published NIMH guidelines and peer-reviewed journal articles, but we can get that from many other "traditional" sources. Given that ACN provides a forum for more realtime info-sharing, it would be nice to see some of the mounting "anecdotal" evidence reflected in it. Maybe interviews with the leading clinicians and researchers - Dr. K, Dr. T, Dr. L, Dr. Cunningham, etc. - to share their real-world experiences in this field and their absolute certainty that PANDAS is a real clinical entity? Maybe mention of "Saving Sammy" and the groundswell of publicity it's inspired?

 

Sorry to whine. I'm just so tired of hearing that PANDAS is "controversial" because it's not to our family, after what we've been through for the past 3 years. And I didn't expect to see that same phrase repeated in Latitudes.

[jewels]

Worried Dad,

 

You have a very valid point of view. All these anti-christ Drs are not living with this and walking in our childrens shoes. If any non-believer dr wants to come to my house for a holiday, then they are more than welcome! We clearly see a difference with the right treatment.

 

I wonder if it was a member of their family would they be so keen with these views.

 

Some latest medical studies from the UK

 

 

Autoimmune dysfunction of the basal ganglia has been implicated in Sydenham’s chorea, paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS), Tourette’s syndrome and in a wide spectrum of patients with complex movement disorders. These patients have circulating anti-basal ganglia antibodies (ABGAs). It has been proposed that these antibodies are induced in response to streptococcal infection and cross-react with antigenic determinants in the basal ganglia by the process of molecular mimicry. We have shown that the ABGAs from these patients recognise antigens of molecular weights 40, 45, 60 and 98kDa. These antigens have been purified (ammonium sulphate purification, 2-dimensional electrophoresis, ion exchange chromatography and hydrophobic interaction chromatography) and identified as aldolase C, non-neuronal and neuronal specific enolase, and pyruvate kinase M1, respectively. All of these proteins are the neuronal isoforms of glycolytic enzymes and are found in both neuronal cytoplasm and membrane, and some (enolase) are also expressed on the surface of streptococci. Interestingly, paediatric subjects with ABGA appear to have persistent nasopharyngeal colonisation with streptococci. We are currently investigating whether ABGA-associated strains of streptococci from these patients differ from other “wild-type” strains.

 

What more needs to be done.

[Chemar]

Worried Dad

 

I posted the info re Latitudes Online Magazine as I had just received my notification of the new issue being up and saw it had some sections on PANDAS

 

my post wasnt in any way suggesting it was Latitudes "up to the minute PANDAS info" nor was it representative on behalf of ACN

 

rather, it was just just one member letting other members know that the new issue was out, and I actually posted it on TS/tics re the microwave and dietary stuff, but felt PANDAS forum parents might also be interested as I had seen those links for PANDAS info, not my "speciality" as my son has TS

 

I have notified ACN's administrator of your post so that she can comment personally, but did want to clear up any misunderstanding that this was an "official" thread. She has been most gracious in hosting a PANDAS forum here at ACN/latitudes.

[peglem]

Jewels, do you have the link for this? Interesting that they mention the persistent colonization.

 

Worried Dad,

 

You have a very valid point of view. All these anti-christ Drs are not living with this and walking in our childrens shoes. If any non-believer dr wants to come to my house for a holiday, then they are more than welcome! We clearly see a difference with the right treatment.

 

I wonder if it was a member of their family would they be so keen with these views.

 

Some latest medical studies from the UK

 

 

Autoimmune dysfunction of the basal ganglia has been implicated in Sydenham’s chorea, paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS), Tourette’s syndrome and in a wide spectrum of patients with complex movement disorders. These patients have circulating anti-basal ganglia antibodies (ABGAs). It has been proposed that these antibodies are induced in response to streptococcal infection and cross-react with antigenic determinants in the basal ganglia by the process of molecular mimicry. We have shown that the ABGAs from these patients recognise antigens of molecular weights 40, 45, 60 and 98kDa. These antigens have been purified (ammonium sulphate purification, 2-dimensional electrophoresis, ion exchange chromatography and hydrophobic interaction chromatography) and identified as aldolase C, non-neuronal and neuronal specific enolase, and pyruvate kinase M1, respectively. All of these proteins are the neuronal isoforms of glycolytic enzymes and are found in both neuronal cytoplasm and membrane, and some (enolase) are also expressed on the surface of streptococci. Interestingly, paediatric subjects with ABGA appear to have persistent nasopharyngeal colonisation with streptococci. We are currently investigating whether ABGA-associated strains of streptococci from these patients differ from other “wild-type” strains.

 

What more needs to be done.

[Sheila]

Hi Worried Dad--I saw your response to the articles in Latitudes, and I understand your reaction.

 

We routinely do research updates for different conditions, and the studies do not always support ACN efforts -- but we have readers who want to be updated on conflicting research. I can see that with your personal experience and passion for PANDAS that the NIMH summary was not of interest, and indeed annoying for you to read. Many of our subscribers are not familiar with PANDAS and the intent was simply to give them a basic overview of the current state.

 

Having gone up against the Tourette Syndrome Association for 15 years, I know well the frustration you refer to. CheMar, whom I am extremely grateful to for her Forum service, meant well in noting there were PANDAS articles in the issue, and she was not yet aware of their standard nature. It would have been better if I had offered qualifying material, as you say. I do hope to interview a researcher in the future, for the next issue or two.

 

We could plan a feature on family PANDAS experiences. Would you like to send yours to me at Sheila@Latitudes.org? I would welcome other accounts as well. I agree, the inspiring Saving Sammy story has had great exposure.

 

Another topic: I'll take this opportunity to mention something about the Forum and you may have a comment or suggestion.

 

I'm really pleased that the PANDAS forum has been helpful to so many people, and am glad to see it growing. However, I have had complaints in writing and by phone from some members who are dealing with TS/tics or OCD. They say they are being told with insistence by PANDAS forum members that the problem must be PANDAS, and they absolutely should see this doctor or that doctor. We never used to receive these types of complaints.

 

While it may be tiring to hear that the condition is controversial, I think it's important for some PANDAS Forum members to keep this in mind when advising (directing) others. No one has all the answers, and online "diagnoses" are fraught with problems.

 

Traditionally, our Forums have been known for their supportive nature, people trying to help one another without imposing on them. Do you have any suggestions for dealing with this issue?

 

In any event, I sincerely thank you for your comments. I know they were well intended. I do "get" what you are saying, and will aim to provide more substantive PANDAS info in the future!

 

Best wishes, Sheila

[jewels]

peglem,

 

I have enclosed the link to this study for you. They are doing lots of research looking at Encephalitis Lethargica which also connects to a Strep attack on the brain.

My dad also has MS, and this is how I came upon this paper. The whole site has some very positive papers, and its nice to see the ongoing studies linking brain inflammation and infection. All new research papers will be posted on here. They are working on a positive path.

 

 

http://www.ion.ucl.ac.uk/departments/neuro...neuroimmunology

 

 

The Encephalitis Lethargica is a serious condition, but please look into this as an insight to how strep can attack. It is very intresting reading. Let me know if you need any links to this condition.

 

Jules

[Worried_Dad]

No worries, Chemar - you did the right thing. Making this forum aware of relevant content was thoughtful! And I in no way meant this as a complaint about you sharing this. I'm glad I finally subscribed officially, after all the invaluable help I've received here from you and others over the years.

 

Sorry if I communicated that poorly. My bad!

 

 

Worried Dad

 

I posted the info re Latitudes Online Magazine as I had just received my notification of the new issue being up and saw it had some sections on PANDAS

 

my post wasnt in any way suggesting it was Latitudes "up to the minute PANDAS info" nor was it representative on behalf of ACN

 

rather, it was just just one member letting other members know that the new issue was out, and I actually posted it on TS/tics re the microwave and dietary stuff, but felt PANDAS forum parents might also be interested as I had seen those links for PANDAS info, not my "speciality" as my son has TS

 

I have notified ACN's administrator of your post so that she can comment personally, but did want to clear up any misunderstanding that this was an "official" thread. She has been most gracious in hosting a PANDAS forum here at ACN/latitudes.

[Worried_Dad]

Sheila, I hope my post made clear how grateful I am to you and ACN for making this forum and other resources available. It literally has been the source of all of the most useful info on PANDAS we've found; and it's led us to the researchers and doctors who have helped our son the most. (And I bought "Natural Treatments for Tics & Tourette's" from this site a while back - great book!)

 

I know there is still controversy surrounding PANDAS, which - to present a balanced view - Latitudes Online was representing. Without doubt, more research is needed, and there are many questions to be answered. It's the NIMH FAQ that really causes heartburn for many of us "PANDAS parents," I guess, because NIMH carries so much weight and their PANDAS page has been static and out of date for such a long time. (There have been a number of threads on that topic on this forum over the years; sore point for many of us, I think.)

 

So please accept my apologies. ACN has done us all a great service, and I appreciate that.

 

I also greatly appreciate the offer to share our stories in Latitudes. I'll try to put something together (and keep it brief, not my strength to send you soon. You might consider reaching out to Dr. Rosario Trifiletti, too, who is a member of this forum / online community and also a leading clinician in the PANDAS area (has published journal articles on the subject and been interviewed on the Today Show on this topic). He could doubtless contribute some valuable insights if his schedule permits.

 

And as far as the other topic goes: wow, I am so sorry to hear that any members of the PANDAS forum have caused extra grief or pain for folks here that are already suffering! I can only assure you that I've never personally diagnosed someone via post or insisted that they or their child have PANDAS; I'm totally unqualified, and I know it. I've just tried to help answer questions and shared my own son's and family's experience, nothing more. I promise to do my best to be a supportive member of this online community and not a source of pain.

 

If I caused any pain or grief on this thread, then I messed up. I'm sorry!

 

 

Hi Worried Dad--I saw your response to the articles in Latitudes, and I understand your reaction.

 

We routinely do research updates for different conditions, and the studies do not always support ACN efforts -- but we have readers who want to be updated on conflicting research. I can see that with your personal experience and passion for PANDAS that the NIMH summary was not of interest, and indeed annoying for you to read. Many of our subscribers are not familiar with PANDAS and the intent was simply to give them a basic overview of the current state.

 

Having gone up against the Tourette Syndrome Association for 15 years, I know well the frustration you refer to. CheMar, whom I am extremely grateful to for her Forum service, meant well in noting there were PANDAS articles in the issue, and she was not yet aware of their standard nature. It would have been better if I had offered qualifying material, as you say. I do hope to interview a researcher in the future, for the next issue or two.

 

We could plan a feature on family PANDAS experiences. Would you like to send yours to me at Sheila@Latitudes.org? I would welcome other accounts as well. I agree, the inspiring Saving Sammy story has had great exposure.

 

Another topic: I'll take this opportunity to mention something about the Forum and you may have a comment or suggestion.

 

I'm really pleased that the PANDAS forum has been helpful to so many people, and am glad to see it growing. However, I have had complaints in writing and by phone from some members who are dealing with TS/tics or OCD. They say they are being told with insistence by PANDAS forum members that the problem must be PANDAS, and they absolutely should see this doctor or that doctor. We never used to receive these types of complaints.

 

While it may be tiring to hear that the condition is controversial, I think it's important for some PANDAS Forum members to keep this in mind when advising (directing) others. No one has all the answers, and online "diagnoses" are fraught with problems.

 

Traditionally, our Forums have been known for their supportive nature, people trying to help one another without imposing on them. Do you have any suggestions for dealing with this issue?

 

In any event, I sincerely thank you for your comments. I know they were well intended. I do "get" what you are saying, and will aim to provide more substantive PANDAS info in the future!

 

Best wishes, Sheila

[matis_mom]

And as far as the other topic goes: wow, I am so sorry to hear that any members of the PANDAS forum have caused extra grief or pain for folks here that are already suffering! I can only assure you that I've never personally diagnosed someone via post or insisted that they or their child have PANDAS; I'm totally unqualified, and I know it. I've just tried to help answer questions and shared my own son's and family's experience, nothing more. I promise to do my best to be a supportive member of this online community and not a source of pain.

 

If I caused any pain or grief on this thread, then I messed up. I'm sorry!

Sheila,

I also wanted to thank you for providing this forum! It's been a life-saver for us.

And regarding people "being told it MUST be PANDAS", I understand sometimes us PANDAS parents might see things a little different (and yes, we can be a little paranoid about strep ), but we are just sharing our experiences, that's all. Like WorriedDad said, we don't want to cause anyone any pain or grief, but many of us have suffered a long time because no one recognized PANDAS in our child until years after onset, and when a new parent reports symptoms that strongly coincide with our experiences, we encourage them to get it checked out so that if it is PANDAS, they can get the right treatment.

 

Thanks again for this forum,

 

Isabel

[jewels]

I also would like to add all my gratitude to the ACN forums. My dh and I were in a very dark place when my dd turned into a totally different child overnight. The Drs had no answers for us and only offered medication that we were frightened to give.

 

We found this site over 3 years ago and never looked back. Advice here sent us to a DAN dr and we took all the advice about checking for allergies, eating the most healthy organic food and supporting her health with the supplements that she needs.

 

Latitudes pulled us up and back on our feet. The support here is a gift from the most special, dedicated people that are here to help us all on this journey.

 

I think all PANDAS parents are very sensitive to the cause because we lose for a period of time our children as we know them. I am trying not to joke about this but my dh describes it as just like the film "Invasion of the body snatchers". But we get them back until the next pod arrives.

 

Finding this forum has been like joining a family that understand where most drs don't.

 

Jules

[MomWithOCDSon]

Chemar -- Thanks for making us all aware of the article in Latitudes; irrespective of our personal feelings about the actual content, few people would dispute the overall benefit of getting the term "PANDAS" out in the world at every opportunity.

 

Worried Dad -- I couldn't agree more with your sentiments, and I know you didn't intend them as shots at either ACN/Latitudes or Chemar. Every day we face the cynics, the critics, the nonbelievers, and those individuals, unfortunately, find safe harbor in the dated and incomplete semantics, research and theorizations included in some of these references. The last thing those of us in this fight need is a point of reference that is cloaked as "current" or "modern," but, in the end, only parrots dated, limited and limiting perspectives on the topic. I, for one, don't understand why the NIMH is so slow to update its information, particularly with items like the Columbia mice study out there!

 

Sheila -- We PANDAS folks are very sensitive to the "controversial" label because we hear it almost every day, and unfortunately the collective ignorance about this disorder is aided and abetted by continual references to dated information like the NIMH's. My son is one of many who, by Dr. Swedo's criteria as stated in the existing NIMH materials, would not meet PANDAS criteria; how then, does one explain his almost miraculous recovery while on long-term antibiotics, when all manner of psychiatric meds and therapies failed to bring him around? This forum is SO meaningful to us, and we very much appreciate being provided this outlet for sharing, learning and querying. Since ACN participates in hosting this forum, perhaps future publication of any issues related to PANDAS could include consideration of the "temperature" of those of us active in the fight, however anecdotal.

 

So, to that end, thank you also for the opportunity for sharing our stories. I have a feeling you'll be hearing from a number of us!

 

Finally, with respect to the PANDAS forum participants "diagnosing" or at least encouraging folks in the TS/Tics and OCD categories to consider PANDAS, I can see how that might be troubling for some, though I'm not entirely certain it warrants complaints to you or ACN. This is an open, public forum and no one is forcing anyone to participate here. When I first joined, it was a matter of days before I'd more or less identified the folks who would very readily "diagnose" my son and in effect prescribe various treatments and/or supplements, those who would share their own experiences but without any particular prejudice in terms of what I "should" do, and those who tune in more or less just to ask questions, rather than attempt to answer them. It is my right and privilege as an adult to sift through all the personalities, information and advice here and decide what to take away and what to leave behind. And I can always just exit the forum, too, if the tone is something that rubs me the wrong way.

 

And I would presume that if anyone is being "pressured" via PM, ACN or its moderators would address that issue on a case-by-case basis.

 

Many of us on the PANDAS forum are so enthused, so happy, so grateful to be seeing the light again based upon pursuing PANDAS treatments, that it is hard for us to refrain from jumping in there and shouting from the rooftops, "PANDAS is real and my kid is living proof that you DON'T have to live with debilitating OCD/TS/Tics forever!" And that probably eekes out in the forum at times. Ideally, we'll all act responsibly and seek, maybe, to open doors for folks who might benefit from considering PANDAS in their particular instance, without devaluing their individual experiences and keeping in mind the possibility that perhaps they are not dealing with PANDAS at all.

[Sheila]

Thank you all for your comments. Please see my recent post on collecting stories. Thanks again! Sheila

 

 

Chemar -- Thanks for making us all aware of the article in Latitudes; irrespective of our personal feelings about the actual content, few people would dispute the overall benefit of getting the term "PANDAS" out in the world at every opportunity.

 

Worried Dad -- I couldn't agree more with your sentiments, and I know you didn't intend them as shots at either ACN/Latitudes or Chemar. Every day we face the cynics, the critics, the nonbelievers, and those individuals, unfortunately, find safe harbor in the dated and incomplete semantics, research and theorizations included in some of these references. The last thing those of us in this fight need is a point of reference that is cloaked as "current" or "modern," but, in the end, only parrots dated, limited and limiting perspectives on the topic. I, for one, don't understand why the NIMH is so slow to update its information, particularly with items like the Columbia mice study out there!

 

Sheila -- We PANDAS folks are very sensitive to the "controversial" label because we hear it almost every day, and unfortunately the collective ignorance about this disorder is aided and abetted by continual references to dated information like the NIMH's. My son is one of many who, by Dr. Swedo's criteria as stated in the existing NIMH materials, would not meet PANDAS criteria; how then, does one explain his almost miraculous recovery while on long-term antibiotics, when all manner of psychiatric meds and therapies failed to bring him around? This forum is SO meaningful to us, and we very much appreciate being provided this outlet for sharing, learning and querying. Since ACN participates in hosting this forum, perhaps future publication of any issues related to PANDAS could include consideration of the "temperature" of those of us active in the fight, however anecdotal.

 

So, to that end, thank you also for the opportunity for sharing our stories. I have a feeling you'll be hearing from a number of us!

 

Finally, with respect to the PANDAS forum participants "diagnosing" or at least encouraging folks in the TS/Tics and OCD categories to consider PANDAS, I can see how that might be troubling for some, though I'm not entirely certain it warrants complaints to you or ACN. This is an open, public forum and no one is forcing anyone to participate here. When I first joined, it was a matter of days before I'd more or less identified the folks who would very readily "diagnose" my son and in effect prescribe various treatments and/or supplements, those who would share their own experiences but without any particular prejudice in terms of what I "should" do, and those who tune in more or less just to ask questions, rather than attempt to answer them. It is my right and privilege as an adult to sift through all the personalities, information and advice here and decide what to take away and what to leave behind. And I can always just exit the forum, too, if the tone is something that rubs me the wrong way.

 

And I would presume that if anyone is being "pressured" via PM, ACN or its moderators would address that issue on a case-by-case basis.

 

Many of us on the PANDAS forum are so enthused, so happy, so grateful to be seeing the light again based upon pursuing PANDAS treatments, that it is hard for us to refrain from jumping in there and shouting from the rooftops, "PANDAS is real and my kid is living proof that you DON'T have to live with debilitating OCD/TS/Tics forever!" And that probably eekes out in the forum at times. Ideally, we'll all act responsibly and seek, maybe, to open doors for folks who might benefit from considering PANDAS in their particular instance, without devaluing their individual experiences and keeping in mind the possibility that perhaps they are not dealing with PANDAS at all.