PANDAS/PANS writing today on Age of Autism website

[SSS]

http://www.ageofautism.com/2014/01/dear-autism-and-pandaspans-researchers-listen-to-the-parents.html#more

[LNN]

funny - I recognize some of the parents and their stories. I don't agree with Swedo and while I even agree with her that some docs give a dx of Pandas when they should dig deeper, I disagree that a child has to be neurotypical prior to onset. How do you know if an infant diagnosed with autism was ever neurotypical? Sometimes, we're still so much in the dark ages.

[Hrosenkrantz]

<<I recently saw a discussion on a parent forum regarding PANDAS/PANS and autism:

"Had an interesting day yesterday. Dr. Swedo herself undiagnosed my son with Pandas/Pans. She said kids with autism cannot have Pandas. She said a little OCD and then an increase in OCD with exposure to Strep do not qualify. She said the child has to be neurotypical before onset. My son has a lot of issues but was dx by 2 pandas specialists and she said they are wrong. She said PANDAS is being dx way too much by these doctors.">>

This from the article -- i presume this was referring to a discussion on this forum? If so, i'd love to read that original thread...

I've been thinking a lot about this question as my son was recently diagnosed with new disorder (not autism), even though three other PANDAS doctors insisted prior to this he has PANDAS? Were the other doctors wrong? Could he have both? In any case, as I wonder about the PANDAS/PANS question, one thing that validates it for me is that some of of my son's worst PANS symptoms -- some OCD, extreme raging, hallucinations, extreme verbal tics, have gone away with treatment and never returned (praying it stays that way) -- even as he still has more recovery to get back to the baseline he was at at 6 years old, before all this hit,

[MomWithOCDSon]

Wow.

 

While I'm sorry to hear Swedo's words reported as they are, and I don't intend to call the person who repeated them into question, I'm hoping we're missing something. That something is out of context. That Swedo had more to say or more to add. Perhaps she's trying to "put a fence around" PANDAS to protect it as a viable diagnosis, even while it continues to be under assault for other reasons and by other quarters. Perhaps she fears that conflating it with other conditions dilutes its viability in the eyes of a contentious western medical community.

 

In the end, I think it is all the tip of an iceberg. That PANDAS/PANS and ASD don't have to be mutually exclusive, nor do they have to be comorbid. Autoimmune dysfunction, likely contributed to by our ailing environment, "doctored" food chain, and short-sighted, non-holistic medical "advances" with respect to vaccines and other interventions/procedures, is worming its way through the population at an ever faster and more furious rate.

 

Therefore, the "rarity" of these disorders is fast becoming a myth. And we should wrap our arms around one another and work together to encourage intellectual curiosity, research, and open-minded interventions without interference by ego, rather than haggling over the alphabet labels. It's a dream of mine, anyway.

[ibcdbwc]

Well said Nancy!

[airial95]

That comment was from a post on one of the many Facbook groups. It spurred a lot of discussion. Had my pediatrician not correlated my son's massive regression and personality change to an impetigo infection, or had we been at a large practice where you see who ever is in that day - he would've absolutely been dx autistic. He wasn't, however, because our ped suspected PANDAS first and foremost (although he prepared us for potential aspberger's dx down the road if PANDAS didn't fit).

 

With PANDAS treatments, you would never think that my son was anything other than perfectly normal.

 

That being said, I remember that original post, and there were many comments made about comments being taken out of context. From my recollection, Swedo's remarks were off-the-cuff and repeated to the parent 2nd hand by the doctor she was meeting with. It was never heard from Swedo directly - so that tends to lend itself to something being lost in translation.

 

Also, Swedo, like Murphy and others, have to protect the integrity of their research. To date, no research has been done on PANDAS in autistic children. Period. Does that mean it's impossible? No, but those are exactly the types of distinctions that researchers rely on. They have to, they say the wrong thing and it exposes them and their credibility, and don't think that wahoos like Kurlan and Singer aren't just chomping at the bit for one of the big PANDAS researchers to slip up.

 

The other thing that must also be remembered, is that to Swedo, and per her definition - there still has to be a "sudden onset". This is something that may be very difficult to detect in some autistic children. That's not to say that we all don't know of cases where the sudden onset was missed, or it was more gradual - but that is still her definition.

 

My child's onset was extremely sudden - can still remember the date and time - but he was too young to be considered PANDAS by Swedo's criteria at the time, so he would've been called autistic. Fortunately, we were local to Murphy, who agreed with our peds PANDAS suspicions, and even went on to publish a case study on my son as the youngest documented case of PANDAS. The only Swedo criteria he didn't meet was age (4-8 at onset at the time). Age criteria is now not considered significant. If you asked Swedo 4 years ago if a 19 month old toddler could get PANDAS, she probably would've said "no" too.

 

Medical research is tediously slow, and I'm always leery of throwing the few people who are carrying the flag for PANDAS under the bus!