What is the difference between PANDAS & autism?

[Guest pandas16]

What is the difference between PANDAS & autism? Is there really a difference at all?? Is PANDAS really autism that just happened during infancy? wondering your thoughts on this.

[SSS]

Ohhhhh, big question. I can only answer for my dd6.

I always say my dd has the gut of an autistic child, but is not autistic.

She has never had a language delay. She does not have any developmental delays. In a regular public school classroom.

But she has health issues- leaky gut, which led (or this was the cause?) to overgrowth of yeast in gut/body, food intolerences. Pandas. It is my belief, that these medical conditions then produced neurological symptoms- sensory issues, major anxiety, OCD, vocal tics, coprolalia.

I did take her to a 3 hour autism evaluation when she had just turned 4 years old (I already had her gf/cf/sf, and had treated yeast-) they told me she is no where on the spectrum, but they saw the anxiety, and when I questioned why at home she would have these 'breakdowns' etc, they literally shrugged their shoulders at me and said:

panic attacks?

I am on bio-med boards and we have a DAN! (defeat autism now) Dr. treating- because her health issues are not addressed by the regular medical community.

[dcmom]

While I DO think some kids with pandas, can be misdiagnosed, particularly if stricken young- I do feel they are distinct disorders.

 

I do not know much about autism, however I think that some of the "hallmarks" of autism are difficulty with expression (verbal, emotional, etc), and self stimming behavior. I do know leaky gut is many times involved, along with other physical issues.

 

The "hallmarks" of PANDAS are OCD and/or tics. We all know there are other things that come with too.

 

My kids have had very classic pandas. It hasn't affected their expressionism, their attention level, their ability to get along with others. With treatment, they are able to live a somewhat normal life- just struggling with ocd that hits like a mack truck, then disappears. They have been otherwise very healthy, hitting their developmental milestones on time.

 

Does untreated pandas look like autism in a 2 year old- I am sure.

 

I do think there is a possibility of autism being a catch all for several disorders and/or misdiagnosed illness, or difficult cases.

[sptcmom]

They are both distinct disorders that can co exist in one child. The difficulty or look at it the other way, the skill of the child's healthcare provider lies in whether he/she is able to distinguish b/w ASD behaviors and PANDAS motor tics. In my practice I find PANDAS undiagnosed or neglected in kids either because even sudden onset of new "stims" is deemed as changing spectrumy issues, maybe he ate gluten by accident, maybe this, maybe that. Its often neglected because only a very select handful of DAN docs know how to deal with PANDAS in conjunction with ASD or even how to educate the parents to watch for signs and symptoms. Many DANs hesitate to use abx anyways and this complicates matters even more.

I have two brothers in my practice, one 5 and one 3. Both diagosed as ASD since age around 2ish.I started seeing them for OT sensort last year and they've made great gains. But started seeing them for ART, ref to Dr T ad Dr Jones and viola, they both have very high camKinase scores (in the PANDAS range) as are their antineuronal antibody titers. Both are aslo positive for lyme.

Now 5 months into ART, lyme and PANDAS treatment, the younger brother is talking, turns out he's very smart just like Dr Jones and I thought, is cognitively caught up, is catching up in speech pragmatics and overall doing well.

His older brother also has intestinal parasites and its a harder road for him but overall socio emotionally doing very well, 'stims" minimal, is acknowledging his siblings, is speaking, singing actually almost all Disney theme songs which is huge because all he could say before was "I want " and a few labels.

 

Strep lodging itself into deep dark depths of the bodies of our kids on DAN protocols is not a surprise if your DAN doc doesn't do abx like mine didn't. All initial strep was treated naturally and some was diagnosed as a virus due to DS not having high fevers ( turns out his strep pneumo titers were pathetic so no or low immune response obviously)DS9 was diagnosed Aspergers at age 2, PANDAS at age 8, Lyme plus Bartonella at age 8.5. He is now, by God's grace, Aspergers free amongst other improvements.

[Wickedmaineah]

As far as the DSM (Diagnostic Manual) PANDAS is NOT on the Autism spectrum. They are two different disorders. For one, Autism is a mental health diagnosis, found in the DMS. PANDAS is a medical diagnosis, found in the ICD 9, which cause mental health issues.

For our own son who was diagnosed at 5 years old with Autism, I now believe there is a chance he was misdiagnosed and it may have been an autoimmune issue the whole time. Our son is considered high functioning and many would say just meeting him that they had no idea he is even on the spectrum. They don't see the daily OCD things, the anxieties, etc. Only time will tell for us which it may be, but either way they both need treatment, love and support.

[MomWithOCDSon]

but then I don't understand why PANDAS is called an Autism Spectrum Disorder if it's not Autism.

 

What are you referencing when you state this?

 

As I recall Swedo's slide presentation, she notes ASD behaviors among the possible "comorbid" behavioral spectrum, along with ADHD, separation anxiety, emotional lability, etc. But she never said that PANDAS was part of the spectrum.

 

And I have a paper by Robyn Cosford that speaks to PANDAS in autism, but again, does not put PANDAS within the spectrum itself.

 

So I'm no clear what the source of your assertion is?

[beeskneesmommy]

UM WOW! 2 very distinct disorders but can coexist, like many other dual diagnosis. I have a perfectly healthy, non-autistic son who was stricken with "classic" PANDAS in that his was response to Strep only. He has long periods of time in which he cannot be identified as any different from any other typical child his age. The classic PANDAS disorder in my son arrived intermittently, when he had Strep. Just like the mechanism in Rheumatic Fever, in which the antibodies attack the heart and joints, in PANDAS, the antibodies attack the Basal Ganglia of the brain, causing swelling, which affects behavior and movement. Once the mechanism is in place for a while, even when Strep is not present, the antibodies will react to other viruses as well (PITAND). My child has been clearly recovering over time, with the use of antibiotics only.

 

One thing to note: Kids with Autism appear to be more susceptible to PANDAS, likely due to a weaker or more "leaky" blood brain barrier. Therefor the waters get muddied for diagnostics, especially with so many practitioners out there that don't know what they are doing.

[MomWithOCDSon]

On top of which, as has been said many times here before . . .

 

"Autism" is little more than a label placed upon a set of behaviors at present. The underlying causes and mechanisms . . . genetic, toxicological, environmental, etc. . . . have yet to be fully discerned or identified.

 

I know experientially, as I've said before in other posts, that, during full-on PANDAS exacerbation following strep or strep exposure, my DS has magnified ASD/PDD-type behaviors; he has more trouble communicating verbally, he will engage in repetitive movements or speech (words and/or phrases), he will engage in less eye contact and avoid social interaction. But once the exacerbation is under better control, those ASD/PDD-type traits recede; in his best health, they are completely non-existent.

 

So to the extent that, perhaps, both autism and PANDAS have, at their basis, inflammation to hold accountable, then there may be a tangential relationship.

 

I remain curious, however, as to who it is who said that PANDAS is "an ASD disorder."

Edited July 5, 2011 by MomWithOCDSon

[PowPow]

in the midst of an "episode"- whether a few hours or even several weeks at a time, my otherwise very expressive, appropriate child would "beome

autistic-- kind of an "intermittent autism"-- not an answer to your questions, just an observation.

 

I agree that they are 2 distinct, but possibly, easily co-morbid conditions, certainly--in a little one, it could be very difficult to differentiate! Also, perhaps, the mechanism of action of cause the disorder could be similar. Who knows?-- I hope someone figures it out soon!

[MomWithOCDSon]

I just read it online in several different places and was upset because I never thought of myself as having "autism."

 

Well, probably rightly so.

 

This might be another instance of "Consider the source." Unless it comes from the leaders in research in either of these fields, I wouldn't place any particular weight on that "opinion." And even then, given the disparity amongst many of those parties in terms of their positions and perceptions at present, I'd probably think twice about jumping on that bandwagon. Too much disparity in professional opinions, too much at stake. Just MPO.

[emmalily]

On top of which, as has been said many times here before . . .

 

"Autism" is little more than a label placed upon a set of behaviors at present. The underlying causes and mechanisms . . . genetic, toxicological, environmental, etc. . . . have yet to be fully discerned or identified.

 

I know experientially, as I've said before in other posts, that, during full-on PANDAS exacerbation following strep or strep exposure, my DS has magnified ASD/PDD-type behaviors; he has more trouble communicating verbally, he will engage in repetitive movements or speech (words and/or phrases), he will engage in less eye contact and avoid social interaction. But once the exacerbation is under better control, those ASD/PDD-type traits recede; in his best health, they are completely non-existent.

 

So to the extent that, perhaps, both autism and PANDAS have, at their basis, inflammation to hold accountable, then there may be a tangential relationship.

 

I remain curious, however, as to who it is who said that PANDAS is "an ASD disorder."

 

 

I just read it online in several different places and was upset because I never thought of myself as having "autism."

 

 

I understand why that would be upsetting but don't let someone else define PANDAS for you. You know what it's like and if you don't feel autistic, then you're not autistic. I've read that several times too and asked myself the same question, but when it comes down to it it's very obvious that my experiences with PANDAS are very, very different than the experiences of the autistic and Asperger's people I know. Is there some overlap? Sure, as there is with many other "brain disorders" (neurological diseases, mental illnesses, physical illnesses with mental symptoms) and maybe that's why these writers you read online try to "place" PANDAS on the autism spectrum...but I think it's safe to say that if you're only experiencing clear-cut, classic PANDAS, there's no reason to think it's anything beyond that.

Edited July 5, 2011 by emmalily

[lmkmip67]

I also wonder how do you determine if a child with autism has PANDAS? I know autistic kids can have their own set of issues, and some are very close to PANDAS. I have seen quite a few kids that are said to be autistic in the infusion center when we have been there and they are so low functioning I wonder how can you tell PANDAS in these children? It is interesting trying to separate all this issues.

[JAG10]

Someday it may be viewed that pandas did autism a favor in that it has pushed the issue of determining the underlying medical condition resulting in XYZ symptoms to a higher level. Is OCD a separate dx or on the ASD? How about TS?

 

I do think there is something biologically different between children who are ASD vs PANS only. Maybe it is the susceptibility to "gut issues" that results in onset of symptoms in conjunction with certain environmental triggers, vaccines, ect. Idk. I do think the symptoms present differently as well albeit there are similarities. I have no doubt I could have doctor-shopped for an ASD dx for my dd between 1-4th grades when she was at her worst. She honestly did not fit the criteria, but rather displayed some characteristics similar to ASD. A hallmark of autism is a language delay by age 3. My dd had 50 words by her first bday and her language was advanced up to a point. Has she exhibited language difficulties that come and go over her lifetime? Absolutely. But they are not the same difficulties as a child with autism. Her language difficulties appear more memory related; word retrieval difficulties and overuse of vague terms AND these difficulties are not constant. Well, this pattern is not consistent with Aspergers or "high-functioning" ASD either. That being said, I do see many of my ASD students have an increase in their particular symptom set related to illness; it is undeniable, yet so many lay people brush it off as them just not feeling well versus immune system dysfunction.

 

I hope science catches up soon. Autism is becoming a catch-all for "something ain't right."

[PhillyPA]

Auto immune encephalitis looks like autism. NMDA encephalitis makes kids look autistic. PANDAS is an auto immune problem so it makes sense if you see autistic traits that come and go.

[peglem]

I also wonder how do you determine if a child with autism has PANDAS? I know autistic kids can have their own set of issues, and some are very close to PANDAS. I have seen quite a few kids that are said to be autistic in the infusion center when we have been there and they are so low functioning I wonder how can you tell PANDAS in these children? It is interesting trying to separate all this issues.

In my very low functioning child I can tell the PANDAS episodes when she begins becoming fixated on ordinary objects or toys even though they cause enormous anxiety. She can't stop without intervention. Further she is in fight or flight meltdowns 24/7. Sleep and toileting issues arise as well.

If you know the nonPandas behaviors, episodes become easy to see. What's harder is doing any kind of ERP therapy when the child has great difficulty w/ communication.