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Why is PANDAS considered an ASD?


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I would love to see the article. It is my impression that PANDAS kids may or may not be on the autism spectrum but simply having PANDAS does not put you on the spectrum. I think there is belief that both disorders are immune related rather than genetic.

 

My son is not on the ASD spectrum but we think he may have PANDAS because of the tic disorder that has become exacerbated due to a STREP infection.

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Could you link to the article please?

 

I didn't think PANDAS was considered a spectrum disorder, but the symptoms especially when severe, can be autism-like.

 

Our daughter was diagnosed with Aspergers, mainly because of her social regression and inability to discern social cues. This has resolved with treatment.

 

Brain inflammation can result in many symptoms that mimic AS.

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i saw PANDAS ASD spectrum disorders, if I remember correctly, only in one context, Cunningham's test web-site in an early version.

Not sure what they use now. But even there, there was no attempt to say that PANDAS is an ASD. PANDAS may have ASD symptoms and some ASD diagnosis may, in fact, be PANDAS. Also, some ASD symptoms may be influenced by an auto-immune condition that might also be a part of PANDAS. But that is where the coincidences, I expect, stop.

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Some doctors think they may be linked. They are still separate entities at this point in time. My son displayed many behaviors of aspergers after his initial PANDAS exacerbation. He was, in fact, diagnosed as aspergers by a neuropsychologist. Treatment has resolved his behaviors but it took a while. He was neurotypical before his first PAMDAS episode.

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I read a revised estimate, i think from nimh that said they now think that as much as .25 percent of asd children suffer from pandas/pans. if the actual number is anywhere near that then i would agree from an administrative perspective. Certainly make sense to put it in that catagory so that funding is available for children and parents that fall victim

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I think the author/headline writer of this article needs some additional education, no offense.

 

There may well be some points of commonality . . . more likely, IMHO, many kids diagnosed with ASD actually suffer from autoimmune dysfunction akin to PANDAS/PANS or, in fact, identical to PANDAS/PANS . . . but to put them together in a headline like that, as though they're one in the same, is a disservice to both the ASD and PANDAS communities. We continue to fight for identity and acceptance, and while there's much each community can learn from the other, to conflate them entirely doesn't appear like a wise path.

 

I've posted a comment. Perhaps some others of us can do the same.

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I just read the posted article. Nancy, I can't see any comments. I was going to leave one. I didn't want my email addy to show up to the world so every crackpot would be sending me email. I'll check back and see if anything shows up and then send a message.

I posted, and then it said that my comment had to be reviewed by a Moderator first. Possibly, as it was critical of the article's wording, it won't ever appear. Oh well . . . I tried!

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Our son, at onset, would have surely been given an ASD dx if it wasn't for our amazing pediatrician. He had seen PANDAS before (although never in one so young - 26 months), my sons regression- he felt - was far to severe to be "simply autism", and the timeline of the start of his regression coincided EXACTLY with an impetigo infection. All things that made our ped think PANDAS first. Fortunately, after 4 years - my son no longer shows ANY signs of autism, although PANDAS is still a struggle with his history of chronic strep.

 

Now that I have given my background, this is something my pediatrician and I have discussed many times before. His theory (based solely on his experience), is that the word "autism" itself is part of the problem. According to him - autism is just a group of related symptoms, however rarely is a cause looked for once the label "autism" is put on it. He believes that PANDAS/PANS falls on the "spectrum" - because the symptoms overlap, and that if more doctors looked for an underlying REASON for the autistic symptoms, many more cases of PANDAS/PANS (or similar disorders) would likely be found.

 

We both have acknowledged that if in the care of another doctor - my son would have been lost to us years ago, because once given the diagnosis of autism - our path to healing with him would've taken a much different route, and it may have taken us YEARS to find the root cause of his symptoms (strep) - and even then, it would have likely been on accident. Which is something that often comes to mind when I hear stories of people who have fully recovered their autistic children - was it truly "autism" in the "traditional sense", or really was it something else entirely - like PANDAS/PANS - that was missed because once a child fit the autism checklist, the doctor's job was done. And to be sure, as the mom of a son whose onset was at 19 months - he overwhelmingly fit the bill for autism, so especially in very young kids, misdiagnosis is a huge concern.

Edited by airial95
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Our son, at onset, would have surely been given an ASD dx if it wasn't for our amazing pediatrician. He had seen PANDAS before (although never in one so young - 26 months), my sons regression- he felt - was far to severe to be "simply autism", and the timeline of the start of his regression coincided EXACTLY with an impetigo infection. All things that made our ped think PANDAS first. Fortunately, after 4 years - my son no longer shows ANY signs of autism, although PANDAS is still a struggle with his history of chronic strep.

 

Now that I have given my background, this is something my pediatrician and I have discussed many times before. His theory (based solely on his experience), is that the word "autism" itself is part of the problem. According to him - autism is just a group of related symptoms, however rarely is a cause looked for once the label "autism" is put on it. He believes that PANDAS/PANS falls on the "spectrum" - because the symptoms overlap, and that if more doctors looked for an underlying REASON for the autistic symptoms, many more cases of PANDAS/PANS (or similar disorders) would likely be found.

 

We both have acknowledged that if in the care of another doctor - my son would have been lost to us years ago, because once given the diagnosis of autism - our path to healing with him would've taken a much different route, and it may have taken us YEARS to find the root cause of his symptoms (strep) - and even then, it would have likely been on accident. Which is something that often comes to mind when I hear stories of people who have fully recovered their autistic children - was it truly "autism" in the "traditional sense", or really was it something else entirely - like PANDAS/PANS - that was missed because once a child fit the autism checklist, the doctor's job was done. And to be sure, as the mom of a son whose onset was at 19 months - he overwhelmingly fit the bill for autism, so especially in very young kids, misdiagnosis is a huge concern.

That is what happened to my daughter- and every illness, behavior change, oddity was attributed to "autism" (which, yes, just means you have a set of symptoms). THEN, they would ask, "Other than the autism, is she generally healthy?" What do you say to that when they claim all her illness is autism? Why yes, except for being very, very ill, she's healthy. OMG, so frustrating. Although, I think maybe autism should be included under post infectious encephalitis/autoimmune disorder rather than the other way around. Either way though, it seems there are many in the PANS community who do not want PANS associated w/ autism.

When my daughter was 10, and seriously screwed up from lack of treatment, we finally found a ped willing to explore cause, and although he made a huge, huge difference in her health- she remains severely developmentally delayed and completely dysfunctional.

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I think the key here is treatment -- does the questionably "autistic" kid respond to PANDAS treatment. My son now appears pretty what is known as PDDNOS. He was never diagnosed with autism (but he was diagnosed with a language disorder and adhd pre pandas. My son has improved with some antibiotics, with IVIG, and significantly with steroids -- never getting back to his pre-pandas, ADHD/language disorder baseline The fact that I saw SUCH a change with steroids -- especially in the area of language -- bolsters the autoimmune argument.

I do know kids who are diagnosed with autism and their parents fully support that diagnosis. They do not think autoimmune treatments will help their child (and no doctor has recommended that) and are focused on therapies to make them more functional.

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Hrosen- those are the kids you want to tell to go play in the poison ivy and see how they respond to prednisone.

 

When I speak with parents of children with ASD and I'm comfortable with them, I ask them this.....how is your child different with a fever? Some have said that is the only time their child ever spoke. One mom cried saying her child was so normal that she would feel guilty how much she enjoyed their illness.

 

Huh? Sounds like something to ponder to me.

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