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The White Paper is Released!


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Go to the PANDAS Network.org website to read a pdf of it. It is not on pub med yet, but Dr. Swedo sent Diana Pohlman a copy with permission to post it.

 

http://pandasnetwork.org/2012/02/the-white-paper-is-released/

 

Hi All, for completeness, here is what Beth Maloney thought about the white paper (she sent an e-mail blast):

 

"Susan Swedo, MD, James Lechtman, MD, and Noel Rose, MD finally came out with a paper proposing that PANDAS fall under the umbrella of something called PANS. The paper's attached [in an email from Beth]. It's an open-access article so distribute to whomever you like. Please read it for yourself and come to your own conclusions.

 

 

My analysis is that while PANS was touted (and even claims) to expand the criteria, include more children, recognize more infections, etc. etc., even a cursory review discloses that the opposite is true. Many sick children are excluded under this proposal, including those who fit the diagnosis of PANDAS. It narrows the criteria and doesn't expand anything other than the age range. And mysteriously missing is virtually any discussion of autoimmunity and antibodies.

 

 

My hope was that this paper would support the conveyance of one clear message: when a child presents with rapid-onset, out-of-character behaviors the treating physician should first consider an infection. Apparently that was too much to hope for.

 

 

In a nutshell, the proposal is that there needs to be all three of the following for PANS: (1) OCD or an eating disorder, (2) two of seven other behaviors, and (3) no other diagnosis to explain the behaviors. In that regard, rather concerning is the suggestion that children be subjected to lumbar punches (spinal taps) in furtherance of criteria #3.

 

 

The examples are endless, but in short:

If your child does not have OCD or an eating disorder - he's excluded

If your child presents with only tics - he's excluded

If your child wakes up tomorrow and won't go to school, screams for you while you're in the bathroom, and must sleep in your bed - she's excluded

If your child suddenly develops ADHD-like behaviors - she's excluded

If your child suddenly has explosive behaviors - he's excluded

If you child suddenly starts wetting herself day and night - she's excluded.

 

 

None of the foregoing will qualify the child for PANS. Moreover, the researchers further describe a "hierarchy" where PANDAS falls under the general diagnosis of PANS. This makes no logical sense because "PANS" excludes so many PANDAS children.

 

 

Why did they do this? It's an attempt to carve up the medical turf. This is politics driving medicine, and the casualties are your sick children.

 

 

Personally, I'll not be supporting PANS or any proposed diagnosis that excludes so many desperately ill children from the treatment loop. I plan to do exactly what I did when the NIMH told me Sammy didn't have PANDAS: ignore them and keep going. And I expect that the doctors who TREAT children - not just study them - will do the same.

 

 

I encourage you to write Dr. Swedo and share your thoughts. Her email is listed on the paper as swedos@mail.nih.gov. "

 

 

 

Thank you for posting Beth Maloney's comments! Beth's book is "Saving Sammy -A Mother's Fight to Cure Her Son's OCD" [OCD=Obsessive Compulsive Disorder], and Beth's website is http://www.savingsammy.net/

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

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On the other hand, Beth always stated "strep" and never expanded on mycoplasma or Lyme. And she always talked "high titers". So that is the same problem that many of us have had with her.... Where would many of our kids be if the criteria was strep alone? Her talks and explaintion have also caused children to go undiagnosed because they have mycoplasma or Lyme. At least the white paper opens the door for other triggers and not just strep.

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Was thinking about the white paper again today and started to wonder if the new published diagnostic criteria in any way correlates to the commonalities among IVIG study participants whose treatment was successful-- or perhaps excludes some whose treatment was not?

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Mom of 3 boys… TICCERS ONLY….and my heart is sooooo concerned and broken by this paper. I have not read all the replies. I hope that someone with closer connections can clarify to me that it is not putting the ticcers directly into TS and do not pass go!!!!!!!!!! Please!!!!!!

I will gladly speak to any of these Drs directly if they will take my call. I will bring my kids to them if they like!

 

DS 4 ½ still in remission 1 ½ years

 

DS 9 in remission 1 year with a recent blip a couple months ago because of contact with a close friend that had strep. Luckily the mom let me know the minute she found out. Kept an eye on him and 3 days later he told me his tics were back and they started the day before. Thanks to the mom, I had the information to know what it was and ready to fight. I had zither on hand and dispensed immediately for 2 weeks. And he was fine within a couple days.

 

DS soon to be 12 is still fighting the battle. We are doing well on doxy and combo to treat lime or myco…don’t really care what we are fighting…we were close to 95% again…. But have had a flare with each tooth loss and now his molars are coming in and things are ruff right now.

What do these people say to my younger 2 going into remission very quickly still????

What do they say about the 15 times my oldest ds contracted strep and ticced only and completely remitted with standard 10 day course of abx in his young life??????(ps. To beat a dead horse…I was the one who told the dr’s 9 yrs ago ..hey, ds only ticcs when he gets strep…what does that mean doc!!!!!!!!!) Is 15 times too many and then it becomes autoimmune? I couldn’t get anyone to give me abx when ds started this episode at 9yrs old with his 16th or so, overnight onset (literally one day no tics, woke up ticking) It was more than a year later, when he was 10 that we had information it was probably myco p that the toddler brought home at that very time of onset and/ or lymes

 

DS is in advanced math, an A/B student, VVEERRYYYY funny and witty, but he’s currently not doing sports as when his tics are bad like now, it is difficult for him to do regular stuff and he is in a lot of pain from the tics. :(:angry::(   

Sad…I was going to update a couple weeks ago on how well we were doing and for so long.

It’s those darn teeth, 12 yr. molars! I always try to keep in mind that inflammation is probably also in the trigeminal nerve, bedsides the brain.

Edited by Fixit
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Fixit- I am not happy about the White Paper either only pointing out that Beth's reason for being disappointed is the same reason that many of us have had with her publicity...."a simple strep test" coments on TV and if the doctors would go by her criteria, your sons would still not be included. The only 2 things I like about the paper are

1. It officaly recognizes that mental issues can come from outside pathogens

2. It can be triggered by other things besides strep - so if strep is not present.... Keep looking

 

I am in the same situation as you...DS12 strep triggered... Now...? Was doing well 90% these last 3 weeks...60%???

 

The younger 2 boys do not fit the criteria, but thank God we knew about this illness early for them and put them on antibiotics. They have held steady for a year now! (knock on wood). The 12 year old was misdiagnosed for a long time and we have been fighting to get him back for many years now! That white paper would have kept our younger boys ds10 and ds9 from getting treatment....ds10 was age regression, night terrors, bed wetting, and ds9 - a "ticcer"

 

my spelling is probably terrible.... On my iPhone at 5:30 am, and can't find my dollar store reading glasses!

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I just realized 3boysmom, that when i opened my statement I should have said "I am a mom of 3 boys".

Just finished reading all the posts. I hope I didn't seem to direct it at you.

 

I don't really have any opinion on Beth. I am glad she at least wrote a book that got published and maybe opened some minds. I am concerned when anyone puts perameters on what illnesses can do neurologically and physically.(Especially drs who i thought would be glad to take note of my documentation of cause and direct effect. But now will sacrifice one group of children because of politics(i'm assuming), in order to possibly save another).

It will take ticcers another 10, 20 years to get the recognition that the accepted group will now get, even though they will still meet with resistance.

 

I am glad your younger boys, like mine are well.

I am sad for you and your oldest. It sounds exactly my situation. Even though i did know there was a direct connection between strep and tics for my ds, i still couldn't get help quicker because the drs dismmissed my connection each time ds had strep anyway(oh the eye rolling...i could smack someone) and i did not know to look for lyme or mp or other illnesses.

 

Sorry again..it was late when i wrote too and i haven't been on the board at all...i was enjoying some normalcy.

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So, if the new "A" stands for "acute," does this mean that this syndrome is not an autoimmune response, unless it's PANDAS in which the "A" still stands for "autoimmune?"

 

 

As I understand it, because they haven't "proven" the etiology (autoimmune) aspect of this disease or "proven" which bugs are the offenders, and because this has been a significant hangup in the medical community to diagnosing this they are sticking to what is known in PANS.I truly believe they know it isn't perfect. Cunningham is still at work, and significant blood/fluid investigation is being done on these new IVIG study cases at the NIMH.

My humble opinion is that significant new info will be published when the IVIG study is complete, but this could still be a while out. Dawn

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Making this a real disease(the white paper) starts the ball rolling. All of our children have a combination of symptoms, not everyone has all symptoms of any diseases. And the naysayer doctors whom will follow this are going to offer the same treatment for ocd as pandas, ssri's and dopamine drugs. Nothing has really changed except, EXCEPT, now more studies will be started. Many studies have already looked at inflammation and tics, further investigation is now warranted. If swedo stated anything more than she did the neurology docs would counter as they have in the past and distort the facts, discrediting her article with slanted titles that confuse many whom just scan the medical periodcials. Let's start with Pandas is real, exists and is an autoimmune reaction, caused by several infections and can cause tics and ocd. It means a lot. Its the beginning, we still need to fight and show how all the children may have additional symptoms, but it is the beginning. The neurology docs will still say, "oh ur child does not have pandas, its very rare, many will struggle with diagnosing, but as more and more questions are asked, the doctors will start getting better at diagnosing, at least they will now start asking questions like "Has ur child had a strep infection, or pneumonia lately? " Or "Does ur child have frequent urination, or separation anxiety? Has his handwriting skills changed during these episodes? Doctors will soon see that kids with tics have many of these symptoms and Pandas is truly more common and more complex than they previously thought. I understand ur disappointment, but after all the public bashing Swedo has taken, taking small steps to get these doctors on board was her only option. Her previous attempts did not "sit" well and it limited our childrens care. One thing is for sure, u won't here pandas does not exist anymore. Its a start, wish it was more, but with the cynical medical system we have and extremely cynical doctors out there, this process is slow and evolving, but at least it is finally moving in the right direction. Pandas does exist. Now what are the doctors going to do about it, keep treating an autoimmune disease with antidepressants and dopamine drugs? Does that make sense, no not for the long term, anyone can see that. Parents will insist on better treatment as parent insisted on making this disease real and known!! But if u want help now, u will still need to see the panda expert docs, cuz waiting around for our huge medical system to change could take decades.

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Have you read the white paper?

 

Tics are no longer a significant part of the criteria (they fall into the nebulous "motor" category in the buffet menu of "other symptoms" from which patients need to have symptoms in 2 of 7 categories). Those who tic but don't show signs of OCD are automatically excluded from the diagnosis.

 

And the only treatment she suggests, beyond the usual short term abx treatment for acute infections are antidepressant and anti-dopamine drugs.

 

I honestly don't think this paper will make the headway for PANS they expect it to make in the mainstream med community. On analysis, It doesn't really say/prove anything new-- it just regurgitates a portion of what was already there (and is a pretty transparent political gambit). IMHO, it makes Swedo and her case for PANS look weaker-- like she's backpedaling and admitting that maybe she really didn't have a very strong case to begin with and is now clinging to the few pieces that haven't already been shot down or heavily contested. (not saying I believe this-- just thinking about perceptions)

 

The things I think this paper are most likely to accomplish are: making it harder for kids to get diagnosed, less likely that docs will Rx treatments other than short term abx and psych/anti-dop drugs, and less likely insurance will cover anything else.

 

So what's the &%$#ing point? If it's not likely to get you anywhere and could be harmful to children who are currently suffering, why not just wait til the study's out and you have something new to bolster your case?

 

I don't think Swedo's stupid, so I have to assume there's a motive behind this; I'm just not convinced the motive is what all of us here would like it to be. She's a scientist, not a practicing doc. She's not looking at patients, or individual children-- she's looking at groups of nameless, faceless subjects and how they may or may not be used as evidence to prove her hypothesis. As she states, "The goal of the new PANS criteria is to attempt to define the clinical presentation of a relatively narrow group of patients in order to improve the comparability of research samples." She then muses that it'll be interesting to watch what happens to the kids who "almost made it" but were excluded under the new diagnostic criteria (while they and their families will suffer due to misdiagnosis and inappropriate treatment). From the scientific side, our kids are dehumanized. I was actually pretty shocked that she personally shared the white paper with PANDAS Network since in it she's thrown a large portion of our children under the bus and admits as much-- the tone of which (within the white paper) is obviously impersonal and detached. If it were me, I would have at least sent something more personal along with it to try to mitigate its impact on the PANDAS community (and in so doing, hopefully pre-empt any backlash).

 

Grrrrr.

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I understand completely and your frustration is so understood. Her goal and audience is slightly different than ours, and I mean slightly, cuz I do believe she wants to help our children, all children with pandas, but first she has to convince everyone the disease is "real". See we know its real, its been real and a reality for all of us for ten plus years. She only came back to write the paper becuz families here and elsewhere were enlightening her how difficult it was to receive care. As for The treatments first line of defense will always be what is most minimal(least cost), familiar, and supportive of public policy. This would be ssri and dopamine drugs for tics. Even abx was excluded cuz of public policy. Its sad but she tried that already, she showed how ivig, abx both helped pandas and she was attacked. So I am sure that her strategy now is to create a disease, symptoms and opening the minds of neurologists everywhere to look further, understand more and come to their own conclusions over time. If that is all she has done we will see success, you cannot get through to a neurologist who laughs at the mention of the disease and dismissed you as a patient. She had to start over, as sad as it is, no one believed this existed, no one thought there were specific symptoms, nor did anyone have any idea how to recognize it. You have to be able to see the disease and then all the rest will come, I hope. For all of you waiting for more, I never expected more since I knew that this is far more political than all of us could ever imagine. Its a shame but its a day to day reality in medicine and government. I agree though, the paper does not address tics enough, but clearly the politics, research and ownership is already in a certain direction for TS, and this could change all that and certain docs feel that the data is not supportive enough to do that. Its not about our kids but the whole system, research grants, jobs, and egos. But I still feel this will start the ball rolling for all our kids and their kids to follow. Wish things were different.

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I don't think Swedo's stupid, so I have to assume there's a motive behind this; I'm just not convinced the motive is what all of us here would like it to be. She's a scientist, not a practicing doc. She's not looking at patients, or individual children-- she's looking at groups of nameless, faceless subjects and how they may or may not be used as evidence to prove her hypothesis. As she states, "The goal of the new PANS criteria is to attempt to define the clinical presentation of a relatively narrow group of patients in order to improve the comparability of research samples." She then muses that it'll be interesting to watch what happens to the kids who "almost made it" but were excluded under the new diagnostic criteria (while they and their families will suffer due to misdiagnosis and inappropriate treatment). From the scientific side, our kids are like lab rats. I was actually pretty shocked that she personally shared the white paper with PANDAS Network since in it she's thrown a large portion of our children under the bus and admits as much-- the tone of which (within the white paper) is obviously impersonal and detached. If it were me, I would have at least sent something more personal along with it to try to mitigate its impact on the PANDAS community (and in so doing, hopefully pre-empt any backlash).

 

Grrrrr.

 

 

I think the timing and the way it was written may have to do with the CANS paper that had just been published. I don't think they were aware this paper was coming out, I think it may have been what held up publication of an earlier, maybe more comprehensive White paper (because of the writers of the CANS paper), and I think they may have been trying to minimize the damage. I don't know this for sure, but I suspect it very well may have been the case.

 

I have also heard that Cunningham has been shooting for around April to get her test out to the general public, and once that test is out, I think things may change a lot. At least I hope so.

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