The White Paper is Released!

[thereishope]

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/

[nevergiveup]

Vicki, u r the best!! Always keeping all of us up to date. Making us all better advocates. Information is power and Vicki gets us our info!!! Thank you!

[MomWithOCDSon]

Thanks, Vickie! LOVE adding this to my research library!

[peglem]

Thank you, Vicki!

[dut]

Hi - just had a super quick read, so I may well have got it wrong but it looks as though the criteria stipulate OCD as having to be present. It seems as though there is no longer a tic component for the 1st criterion. Under the second criterion movement issues are covered but, if I'm understanding right, it is no longer "OCD and/OR tics" just OCD with associated movement.

 

Am I reading this right and if so does this exclude those kids for whom OCD is not a component, whereas PANDAS would include them?

 

thanks....

Edited February 15, 2012 by dut

[AmySLP]

Hi - just had a super quick read, so I may well have got it wrong but it looks as though the criteria stipulate OCD as having to be present. It seems as though there is no longer a tic component for the 1st criterion. Under the second criterion movement issues are covered but, if I'm understanding right, it is no longer "OCD and/OR tics" just OCD with associated movement.

 

Am I reading this right and if so does this exclude those kids for whom OCD is not a component, whereas PANDAS would include them?

 

thanks....

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?

[tpotter]

Bump

[1tiredmama]

dut, I'm reading it the same way. That will exclude a lot of kids. I notice, too, the absolute requirement of acute onset. So, where does that leave kids who have had steady increments of neuropsychiatric problems since birth or toddlerhood, but not necessarily an acute presentation? I can understand sticking to the acute criteria for a disorder strictly dependent upon a viral or bacterial trigger, but they have opened it up to other triggers. How can they be so certain that these "other" triggers do not set a less acute presentation in motion?

[PowPow]

Those are really good points, that had not occurred to me, as I have the overnight-onset type of kids & they also have OCD with tics as secondary symptoms. In fact, I was so thrilled by the article, I read it probably 4 times yesterday! I think they looked in my windows and described my kids to write it. It was so dead-on it was unbelievable.

I do see how this really might affect (maybe not treatment-wise, as most of the doctors are treating these kids with tics, only, right?) some kids here, though.

Actually, this might already be the case -- eljomom-- you do not get much response for your "happy" ticcer, right?

So, in just looking at the criteria, briefly again-- the "tics" only kids could get swept into criteria III; that is

III. Symptoms are not better explained by a known neurologic or medical

disorder, such as Sydenham chorea, systemic lupus erythematosus,

Tourette disorder or others.

 

Will these kids all become "tourette's"?

Wow.

 

Awesome paper from my point of view, but looking from others' situations-- maybe a big "ouch"

Interested to hear what all you "tic only" parents think about this.

Edited February 16, 2012 by PowPow

[MomWithOCDSon]

dut, I'm reading it the same way. That will exclude a lot of kids. I notice, too, the absolute requirement of acute onset. So, where does that leave kids who have had steady increments of neuropsychiatric problems since birth or toddlerhood, but not necessarily an acute presentation? I can understand sticking to the acute criteria for a disorder strictly dependent upon a viral or bacterial trigger, but they have opened it up to other triggers. How can they be so certain that these "other" triggers do not set a less acute presentation in motion?

 

I agree with you whole-heartedly.

 

The paper does also say, however, that "a prior history of mild, non-impairing obsessions or compulsions does not rule out the syndrome, as children may have had subclinical symptoms present for an extended period prior to the sudden onset of the full disorder."

 

I read that as there is still a good bit of subjectivity involved here. While my son's original presentation of OCD, I feel, sort of "crept up on us" overall, the excessive handwashing did, in fact, commence overnight. As did his completely debilitating, overwhelming anxiety at age 12. Since he meets Criteria II via every one of Nos. 1 through 7, and every doctor we saw could not explain how "regular OCD" could present with such dramatic general anxiety and sensory issues, I feel relatively comfortable that a doctor embracing the criteria of this paper would identify PANS in my DS.

 

Of course, that could just be wishful thinking on my part, too.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[nicklemama]

My understanding, in reading, was that tics were listed under sensory and motor abnormalities. "Motor abnormalities ocurring in PANS include a variety of signs and symptoms, such as abrupt deterioration of the child's handwriting (dysgraphia), clumsiness, motor hyperactivity, tics and choreiform movements."

 

I also understood that PANS is not replacing PANDAS. Its a tool for diagnostic criterion where the child does not meet the criteria of PANDAS.

 

I can see where it would be concerning if your child is a primary ticcer and has no history of strep.

 

My son is the poster child of PANS. He had dramatic, sudden onset OCD. He has 6 of 7 in II (no academic school peformance issues). He also developed tics as the months w/out diagnosis and treatment wore on.

 

THE one criteria that kept him from being considered for PANDAS in the first place was the lack of strep positive cultures or titers. He was never tested for strep when sick. He fits PANDAS except for criteria 4. By the time he was ever tested for strep, a yr had lapsed. He has been tested a few times since, when he is sick, but cultures/titers have all been negative.

 

My view is that PANS is intended to be inclusive of children who have no temporal relationship to strep, whether it was not tested during the critical time or something else triggered the PANS. This critical piece to PANDAS has kept a whole bunch of kids from being treated.

[thenmama]

Stepping back from my personal connection to this and trying to view the white paper with some objectivity-- or at least an outsider's view, this is how I'd see it:

 

This paper is not about us and our kids. This paper is really about building the case for PANS/PANDAS, putting the "controversy" and fuss over it to bed, and officially establishing it as a distinct, recognized condition. The biggest naysayers/obstacles to achieving that come from the TS camp (K&S). Bring it back around to OCD as primary diagnostic criteria (remember why Swedo began the research that led to PANDAS) and relegate tics to the concurrent symptoms category, you've both created a more specific condition (meaning it doesn't tread on as many other specialties' turf) and you shut down the case and relevance of the most direct threat/hindrance to reaching your desired end. Without tics as primary, there's not a direct conflict with K&S's work/area and even if they don't back down, their expertise in their area of specialty doesn't hold so much weight (b/c tics look like an optional concurrent symptom from the menu of additional features meaning kids may or may not have them). From a distance, I see it as a strategic, political move.

 

Filling back into my own skin, I'm worried about this and really hope it is not harmful to the children in our community who are tic-only or tic-mostly, and others like them. I also feel like the paper stopped short of where it could have gone (if any of its aim was toward helping the kids w/ existing PANS in the short term)- but more on that later, my boy looks about to blow...

[norcalmom]

Disappointed. Thats my reaction after one quick read.

 

Here's my summary - If your child has OCD, get some SSRIs and behavioral therapy...you may also want to check for strep throat and depending on the child's examination, other infectious triggers might also be considered and appropriate laboratory studies obtained, and treated with antibiotics. If you are primariliy a ticcer - you have Tourettes. There you go in a nutshell.

 

All this does is create a new definition. A new grouping - she refers to pandas as a sub group but - by her own defintion - pandas can include Tics only, and PANs cannot (therefore cannot be a subgroup!). Also, pandas does not require that you have at least OCD + two other symptoms. So, - it is a SEPARATE group, but there is overlap.. (so its confusing if you are trying to use the criteria to diagnose).

 

And, it only further supports what the NIMH website states as treatment - SSRIs and behavioral therapies. I don't recall even seeing IVIG mentioned! And antibiotics not recommended. She also removed "episodic course" which, from what I've read and heard of antecdotaly is present in 70+ percent of the cases - they aren't even noted in the new definition. Why do they feel the need to be so black and white?

 

You don't need strep anymore (good) but she doesn't say to throughly check for all types of strep as well as mycoP and lyme, or immune problems...(bad)

 

Description of the other symptoms was good.

1. Anxiety

2. Emotional lability and/or depression

3. Irritability, aggression and/or severely oppositional behaviors

4. Behavioral (developmental) regression

5. Deterioration in school performance

6. Sensory or motor abnormalities

7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency

 

And - it calls out anorexia, but nothing else. To me restricted eating is a form of OCD, but so are intrusive thoughts, and hair pulling and any number of other atypical OCD behaviors. Its called out, which may help doctors and parents to ask who probably don't know what all forms of OCD are - but it misses all the other forms that aren't well know stereotypical behaviors. I would rather it refer back to the Children’s Yale-Brown Obsessive-Compulsive Scale at that point (not in summary - where she says "it might be useful") because most parents and pediatricians have NO IDEA of what kinds of questions to ask or behaviors to note to determine if a child has OCD - esspeically since they like to hide it (which she does mention in the summary).

 

And the criteria that "symptoms not better explained by ...or Tourettes" means ever ticcer WILL get a dx of tourettes - since the tourettes criteria include comorbidity of OCD, ADHD...etc. So, my child fits in both definitions - and therefore is "better" explained by Tourettes (and would have been placed there - esspecailly at the beginning when I didn't understand what he was doing WAS OCD) . This should absolutely be the OPPOSITE you get the dx of Tourettes - if your symptoms not better explained by PANDAS.

 

 

I guess I envisioned a real diagnostic tool, with realistic treatment recommendations - something for doctors and parents to use until "further work" and "better studies" have been done. This isn't it.

 

The new def. is broader in some ways - which may end up hurting them (no need for any infection strep or other, or autoimmune issues) - so all OCD that comes on suddenly is included, and that may end up biting her in in the you-know-what as much as tics when it comes to other reasearchers trying to replicate studies or doing antibiotic trials or IVIG. Again, antecdotally, most of the kids I hear about here have ongoing chronic infection or immune issues, and will remain sick until those are addressed (and strep is one of them).

 

I was hoping for so much more from a "White Paper". This paper puts up a fence to keep the Tourettes critics out of her backyard, and I can see that she might want to do this for her own research criteria, but to do so for the entire definition of the group, seems to be leaving a large number of kids on the wrong side of that fence...a decision that I feel will be regretted in the long term.

[MMC]

I also am disappointed. Both of my PANDAS kid's dominant symptom is ticcing, followed by OCD, ADD / ADHD, sensory issues. This doesn't help narrow a PANDAS / PANS diagnosis that would help with possible insurance coverages on treatments. It looks like they can more easily fall into a Tourettes diagnosis, as stated by thenmama. Tourettes is a condition, not a diagnosis in my opinion. What is the cause of TS? Well, in my kids, it was an autoimmune reaction to strep. It was for me, too...so there is familial history, but so what. My son never ticced in his life, until he got strep in March 2009. My daughter never ticced until she got strep in 2000. That's how I knew she had strep...I noticed she had an eye blinking tic.

 

In 2000, my wife even spoke with Swedo on the phone, asking about her research study. She asked if our daughter showed signs of OCD. We said, no we don't think so. She was only five and we did not note any OCD type behaviors, and barely knew what to look for or what OCD meant. So, Swedo has always looked at OCD as the primary symptom. But, our kids are different, tics are primary, OCD is secondary. They still have PANDAS. So, I don't know what to think about this. I certainly appreciate and respect Swedo, and maybe it is due to pressure from the other docs out there who are naysayers, as stated in previous posts. I'm just hoping for advancement in: 1) Recognition of disorder by practitioners, 2) Treatments and 3) Insurance Coverage of treatments. I'm thinking grandchildren (future), not only our children.

Edited February 16, 2012 by MMC