The White Paper is Released!

[butterflymom]

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Edited October 5, 2015 by tampicc

[dut]

Also, how many people can recognise OCD or mild versions of it?

 

Many children and adults hide their OCD or internalise it.

 

It is also difficult to recognise in younger children. I feel convinced my DS4 has been showing signs from 7 months old, the same time his sister came down with her first recognised episode but it is only now, nearly 4 years later, that we are seeing what I would call classic OCD signs and those are mild, recognised by a hyper or maybe over:) vigilant mother. If it weren't for DD his OCD as it stands would go completely under the radar

 

I am also disappointed in the name's move away from the immune system component. I understand the need to move away from the individual triggers and even from infectious triggers (my dd will trigger to allergies as do others) but feel the name is now too expansive and, I fear, will do nothing to further the cause and may just dilute the message that these changes in our children are based in biology.

 

Maybe I'm being too harsh... I just felt disappointed. I was expecting the White Paper to be a clear, loud and resounding validation for the immune triggered neuropsychiatric changes seen in these children and I feel it wasn't .

Edited February 16, 2012 by dut

[Debbie1]

While I have great respect for Dr Swedo, I am also disappointed with the paper. I have two pandas kids, one of which meets the criteria in the new paper and one who does not. The one who does not has tics only yet met all of the original pandas criteria and was considered by at least one pandas doctor to be a textbook case. Both kids have benefitted tremendously from antibiotics, steroids and ivig. I fear that under the new criteria, my child with tics as the only presentation would have never been diagnosed. I am afraid to give this new article to my pediatrician - I think it will cause him to overlook many possible cases. I am also disappointed with the lack of mention of immune modulating therapies. We tried SSRIs and they not only did not work but had a negative affect.

[Debbie1]

Double post

Edited February 19, 2012 by Debbie1

[EAMom]

Wasn't an outbreak of tics after strep in Rhode Island one of the first incidents that Swedo first investigated decades ago? She's really moved away from this:

 

 

In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 In addition to tics, PANDAS patients had a high incidence of psychiatric disorders, particularly obsessive‐compulsive disorder (OCD) (discussed later). The patients were clinically differentiated from ‘idiopathic’ tics and OCD by the temporal association with microbiologically‐defined streptococcal throat infections. Furthermore, the patients often presented suddenly (rather than insidiously), and the mean age of onset of PANDAS patients was also younger than previously described tic and OCD cohorts.4,,12 Given the high frequency of streptococcal infections in the community, two or more exacerbations associated with streptococcal infections were required for diagnosis of PANDAS.12

 

I took that quote from here: Autoimmunity and the basal ganglia: new insights into old diseases http://qjmed.oxfordjournals.org/content/96/3/183.full

 

YIKES!

 

And did Swedo forget about this little tidbit when she said (in the batavian interview)that there never has been a mass outbreak of PANDAS?

[Sequin]

I completely agree this is very disheartening for those of us whose children are primarily ticcers. In the case of my DS- his primary acute onset was tics- very severe and overnight. It wasn't until his 3rd and 4th illness and re-occurrence of ticcing that we were able to link it to strep. He has been on a prophylactic course of zithro now for 90 days and is now 100%. In the case of my DS- why do the abx work so effectively if it is just TS???!!!

 

I am fearful for all of the future children who will be diagnosed with TS incorrectly and will suffer unnecessarily.

 

Can some of you that have been here from the start provide more of the history as to why all of the push back from the TS side? It makes absolutely no sense to me at all.

[EAMom]

I completely agree this is very disheartening for those of us whose children are primarily ticcers. In the case of my DS- his primary acute onset was tics- very severe and overnight. It wasn't until his 3rd and 4th illness and re-occurrence of ticcing that we were able to link it to strep. He has been on a prophylactic course of zithro now for 90 days and is now 100%. In the case of my DS- why do the abx work so effectively if it is just TS???!!!

 

I am fearful for all of the future children who will be diagnosed with TS incorrectly and will suffer unnecessarily.

 

Can some of you that have been here from the start provide more of the history as to why all of the push back from the TS side? It makes absolutely no sense to me at all.

 

My understanding is that your child would still count as PANDAS/PITANDS (tics only, correlated with strep/other infections), even if he doesn't qualify as PANS.

 

My disapointment, is with either diagnosis is that Swedo doesn't come out and say a trial of long term antibiotics (or even a trial of antibiotics in the absence of an acute infection) is warranted.

Edited February 19, 2012 by EAMom

[Worried_Dad]

Overall, I'm heartened by the white paper. Seems like it's an incremental step in the right direction. My take at this point is that Dr. Swedo is being very, very cautious as she makes the case for PANS because she and her team were attacked so ruthlessly for the original PANDAS hypothesis. Here's the statement that struck me:

 

Primary tic disorders were not a topic of discussion, because of the

reported difficulties in accurately identifying PANDAS among patients

presenting with primary tic disorders (described above).

 

As others have mentioned, the main "PANDAS bashers" came from the tic / Tourette's camp, so avoiding anything that overtly antagonizes this group is probably a political necessity at this point. I agree that it's frustrating - our ds originally presented with tics / pseudo-seizures and no recognizable OCD (and was diagnosed with SC instead of PANDAS at that point) - but I can understand why she's treading softly. It sucks that politics is such a key consideration in the medical research arena... but that's reality, I guess. I think Dr. Swedo and her team are trying to compromise "for the greater good." And frankly, if this gets docs in the trenches to consider a PANS diagnosis more seriously, I think it's inevitable that they'll observe patients (like my son) who clearly fit this diagnosis but who have tics or choreiform movements as a primary symptom.

 

Can't blame NIMH for being a bit gun-shy after the firestorm of "controversy" (i.e., withering scorn and professional ridicule) that the unveiling of the PANDAS hypothesis triggered over the past decade. They're on to something incredibly important - it could literally transform the treatment of mental illness - but they can't afford to get "filibustered" by prominent naysayers any longer. That hurts countless families and afflicted children. So I think they've made a tactical decision to narrow the initial scope of PANS so it has a better chance to gain a foothold, then they can expand from there.

 

So I think we in the PANDAS / PITAND / PANS (or whatever the heck we are) community need to be patient. With all the publicity, and the the respected researchers (like the folks at Columbia and Tel Aviv providing corroboration via animal models, and the Jenike interview in Scientific American) voicing their support, the tide is definitely turning. Vickie's "Year in PANDAS retrospective" videos always remind me of how far we've come (and get my adrenaline pumping)!!!

 

We're not at the end of the road yet. But at least we're passing major milestones on the journey to the medical establishment acknowledging the terrible illness that torments our kids. That's a wonderful thing!

[T_Mom]

To add another thought to the conversation--

 

I am wondering (hoping) the White Paper was to be a paper to pave-the-way for the results of the IVIG study at NIH???

 

Perhaps it was to "open the door" for the definition ---

and now the TREATMENT issue will be addressed once the NIH study is completed...

 

I mean afterall, they ARE using ANTIBIOTICS long term, AND IVIG to treat PANDAS/PANS AT THE NIH right now!!

[Iowadawn]

My thoughts are a combination of T.mom and worrieddad. I think this paper is meant to appease the naysayers and shut them up. Notice the "CANS" paper was cited. "See, we really weren't so far apart. We thought of CANS , but we can go along with PANS. Boy, we will no longer look foolish ". I do think Swedo is being very careful and meticulous in the presentation of PANS and the IVIG study will be the capstone. The treatment protocol was purposely limited for a good reason. I think of this as a Kum Ba Ya paper. I do believe Swedo "let" the CANS paper be published first on purpose. There has been a method to the madness With All the frustrating delays and happenings this past year....IMHO.

[bulldog24]

"I thought the same, but with further reading felt that PANS is the umbrella term and that PANDAS remains as a type of PANS. Is that correct?"

 

I spoke to a member of the sweedo team and this is exactly how it was explained to me.

PANDAS still exists

[bulldog24]

"I thought the same, but with further reading felt that PANS is the umbrella term and that PANDAS remains as a type of PANS. Is that correct?"

 

I spoke to a member of the sweedo team and this is exactly how it was explained to me.

PANDAS still exists

[momcap]

Also, how many people can recognise OCD or mild versions of it?

 

Many children and adults hide their OCD or internalise it.

 

It is also difficult to recognise in younger children. I feel convinced my DS4 has been showing signs from 7 months old, the same time his sister came down with her first recognised episode but it is only now, nearly 4 years later, that we are seeing what I would call classic OCD signs and those are mild, recognised by a hyper or maybe over:) vigilant mother. If it weren't for DD his OCD as it stands would go completely under the radar

 

This is one of my main concerns too. With OCD as the main criteria I never would have thought my DS had PANDAS/PANS, and I never would have pushed our docs in this direction and demanded the relevant tests. He didn't have motor tics, only vocal tics. But he fit EVERYTHING ELSE, so I pushed for testing which was positive including very high ASO and positive Cunninghams. And it was only AFTER recognizing PANDAS that we grew to recognize his OCD. He hid it so very well. I realized after the fact, that he showed signs of OCD at least from 15 months - when he stripped off any clothing that wasn't green. We just thought he was incredibly strong-willed (which he is!) and really loved green. But it was a short-lived episode, and other strange episodes followed. Now that he is starting to feel better he talks about "when I had PANDAS I used to do ..." and tells us about all sorts of OCD things he was doing that we never even noticed. For instance - I used to touch everything with my left hand if I touched it with my right hand. I used to spin every time I crossed a line. Etc. He was sooooo hyper (ADHD, hypomanic) and always moving, that watching him touching things and spinning just seemed like hyperactivity. I did not see the patterns. Now that he's able to talk more about it we are finding out that much of his defiance was driven by OCD. For example, he is extremely possessive and unable to share, but this is because of a fear of contamination with others' germs. We had no idea. We are realizing more and more that germaphobia has been driving much of his negative behaviour, which came across as defiance and outright meanness.

 

I guess there isn't room in a paper like this to go into the details of how to recognize OCD in a young child, but it would be helpful if there was some reference. Before experiencing PANDAS, when I thought of OCD I thought of severely disabled persons who could rarely leave their homes because their rituals made it impossible to function normally. I never saw the more subtle, but in some ways, equally debilitating, symptoms in my own child until I became better educated, and even then I missed so many of them.

[mama2alex]

I would encourage all who have concerns about this paper to write to Swedo at swedos@mail.nih.gov. She needs to hear from the patient community as loudly as she hears from the "naysayers."

[EAMom]

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. "