Susan Swedo's latest presentation

[peglem]

Thank you for posting the Sweedo presentation. I was wondering if anyone else thought it was odd that she kept refering to PANDAS as a subgroup and not a diagnosis. Did those of you who did notice think she was referring to PANDAS cases as a PDDNOS? Are we to believe this is a spectrum disorder? It may be easier to get treatment and belief from Dr's and school assistance if it falls into the autistic spectrum disorder. Schools and Dr's believe Autism exists. Also did you hear her mention these kids would seem almost bipolar by the mood swings and change in behaviors during the exacerbation period? For us it is the behaviors that cause us the most trouble here at home. We have found mood altering meds work best at keeping his tantrums and attention more even balanced. I pray we won't need them forever but for the time being the meds along with antibiotics are a necessity. Will the new drugs she mentioned riluzole help with the moods? FIY some studies out of NIH relating to PANDAS

 

I haven't had a chance yet to watch the presentation (sure wish I could just get a transcript). But, PANDAS, is not considered a dx and has no dxcode. That's one of the reasons its hard to get doctors to diagnose and treat it- they have to make a treatment plan based on their dx. But, it is a subgroup of people who can be dx'd with OCD/tic disorder. I'm not sure if she referred to it as a subgroup of autism or not (she was speaking at an autism conference, no?).

 

My personal opinion is that children who contract PANDAS in infancy or early childhood may qualify for an autism dx because of the effect it has on sensory processing and at that point in development OCD would look alot like stereotypical behavior or self stim. I also think PANDAS problems would interfere enough with normal development that there would likely be some developmental delays. Frankly, a lot of the PANDAS behaviors I read about on this board are exactly what happens frequently in autism. (my daughter is pretty severely autistic and we found out she has PANDAS as well- which came 1st?) Also, researchers at the MINDS institute have found immune system abnormalities in autism.

 

As far as placing PANDAS on the autism spectrum, I'd think we'd be much better off if PANDAS was given its own dx code or called atypical syndeham's. The trouble with the autism dx, is that it comes with SOOOOOOO many preconcieved notions and, being as the criteria for autism was invented by psychiatrists...well, hmmm, I'm having trouble explaining what I mean, but, Its really tough to get medical treatment for autism- there are these ideas out there that it is a pschiatric condition (slowly changing) of unknown cause and no cure or treatment. They don't generally try to find what's causing these strange, bizarre behaviors in your child and they assume that everything that happens to your child is the result of or attributable to the autism. Educationally the predjudices are pretty prevalent as well and most educators (even special ed people, who are perhaps worse because they think they've been trained to deal with it and know better than parents) see your child has unable to achieve (again because of the autism) and they have a built in excuse for why they are unable to get your child to learn the things other children learn. I think if they were really trained-they should be able to teach autistic kids the same thing that other kids learn.

 

So, I get your point about at least professionals recognize autism as a real disorder. But I think they started on the wrong end of the problem when they defined autism- as a set of behaviors. Sweedo is saying, "Hey, something is causing these behaviors and its not just one disorder, but many different causes that are manifested in similar ways." So, instead of studying the big Autism and trying to generalize the results to a bunch of people that they may or may not apply to, she wants to break it down into subgroups. Its about time. Parents of autistic kids have been saying for a long time that there seems to be a huge variety in what causes this (before doctors even considered looking for a cause). I've been frustrated by research that shows 40% of autistics show improvement w/ treatment x, 57% show improvement with treatment y, etc. So then, practitioners just try these treatments for all autistics...nonspecifically. I'm tired of trying treatments that don't work for my child!!!

 

Furthermore, (sorry, didn't set out to write a diatibe on autism-but since we're on the subject...) since most doctors don't know what to do about autism, they're pretty quick to toss it over to psychiatry. Psychiatrists don't know what to do either, so they recommend all sorts of vile psych meds, completely guessing what might work AND since autistics have different causations, even if they are very successful with one, that same treatment is useless or damaging for others.

 

Okay, I'm done now.

[EAMom]

Hi Peglem...good points.

 

No, Swedo didn't mean that PANDAS was a subgroup of Autism. Pandas is a subgroup of those with tics/ocd. I think she talks about PANDAS at the Autism conferences b/c 1) she "discovered" PANDAS and now researches autism at NIMH 2) both are behavioral/psych. conditions which may have similar etiologies (eg. immune med. etc).

 

I did read one paper that talked about a PANDAS spectrum (trifiletti etc.)...not meaning it was part of the autistic spectrum but (I think) meaning not all cases presented the same way, eg, some were more chronic, some more acute, some had tics vs. OCD, eating disorder, etc...

 

Yes PANDAS causes many "autistic" type symptoms...so a child could be misdiagnosed as one vs. the other. I guess the million dollar question you would want to know is.... if GABHS didn't exist, where would your dd be, neurotypical or still autistic?

[peglem]

Hi Peglem...good points.

 

No, Swedo didn't mean that PANDAS was a subgroup of Autism. Pandas is a subgroup of those with tics/ocd. I think she talks about PANDAS at the Autism conferences b/c 1) she "discovered" PANDAS and now researches autism at NIMH 2) both are behavioral/psych. conditions which may have similar etiologies (eg. immune med. etc).

 

I did read one paper that talked about a PANDAS spectrum (trifiletti etc.)...not meaning it was part of the autistic spectrum but (I think) meaning not all cases presented the same way, eg, some were more chronic, some more acute, some had tics vs. OCD, eating disorder, etc...

 

Yes PANDAS causes many "autistic" type symptoms...so a child could be misdiagnosed as one vs. the other. I guess the million dollar question you would want to know is.... if GABHS didn't exist, where would your dd be, neurotypical or still autistic?

 

But, see, I don't even think its a matter of misdiagnosis. The autism "dx" is really just saying a certain set of behaviors has been observed in this person. So, it seems to me the real dx would be the thing that is causing the behaviors...So, if my daughter has PANDAS, a metabolic disorder, a genetic disorder, whatever....she still manifests as autistic because she has those behaviors. Honestly, the whole autism dx is messy business. I prefer the way autism is defined by the RDI (relationship development intervention) people. They identify it as developmental deficits in 5 core areas- and they have a way to address and treat those deficits.

 

Thanks for the clarification on what Sweedo was saying...that sounds about right. I hope I get a chance to watch the whole presentation...I seldom get a whole hour to myself here.