What is the difference between PANDAS & autism?

[airial95]

I can only add my experience here. Someone asked if PANDAS looks like autism in a 2 year old, and I can say absolutely YES!! My son had his first episode at around 19-20 months (dx PANDAS at 26 months.) He is a textbook case, maked primarily by OCD, but some minor tics started around 6 months after dx. If my son wasn't so advanced verbally to begin with - he would've been tagged autistic. The difference is, he went from complete sentences at 18 months - to less than 20 words or so (the most common being "NO"). If it wasn't for us (and our pediatrician) seeing the decline - he would've met many of the criteria. His OCD was unrecognizeable to us as parents because it manifested with unreasonable tantrums, and his sensory processing was non-existent. Our pediatrician has treated PANDAS kids before, and noticed our behavior complaints/concerns started a few weeks after he was treated for impetigo - Within 2 weeks on the abx he was verbal again. (It acutally made us feel like terrible parents because until he starte talking regularly again - we hadn't really realized how severely he regressed verbally).

 

If we had a less astute pediatrician, we would've gotten the autism label and benn sent down a very long (and incorrect path).

 

With that being said, our pediatrician is of the belief that PANDAS and other things like it should be included on the spectrum - seeing as the spectrum is a collection of symptoms. He doesn't think our son is autistic in the classic sense, just that some of the symptoms in young children mimic spectrum disorders, and it should be included as a potential source of they symptoms. Unfortunately - he realizes that once a child shows up "on the spectrum", many doctors stop looking for clues as to WHY they're exhibiting the symptoms they are (autoimmune, etc...) and it goes into more of a management type of care.

 

It's something that I question - when you hear about folks whose children were "cured" from Autism - does it mean that they didn't have autism to begin with - or that they just found, and eliminated, the triggers for the symptoms of autism - like PANDAS, environmental, nutritional, etc...

 

It's always a facinating discussion!

[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.

 

 

No. Pandas is caused by strep. NMDA is more similar to encephalitis lethargic or even limbic encephalitis. Most encephalitis cases occur after an infection of some sort.

 

NMDA encephalitis--- wouldn't that theoretically be PANDAS since glutamate is problematic.

[PhillyPA]

Yes. I agree 100%. It is all in the same can of worms.

[beeskneesmommy]

Interesting that Dr. K provides a "phenotype" for kids with PANDAS. Among the criteria is early verbal communication. Yet if my memory serves me, one of the clssifications for Autism is late emergence of communication skills. I have not gone over the spectrum since it seems to have evolved into a larger bucket than it used to be. However, my 4 year old has PANDAS, and demonstrates no symptoms of Autism in between flare ups or prior to the emergence of PANDAS. I belive without a shadow of a doubt that they are succinctly separate disorders, but that PANDAS can look like Autism during acuity.

[Johnsmom]

:) :) :)

 

 

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."

[smartyjones]

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."

 

well put JAG! i have had a couple of docs kind of throw the term asperger, even though ds wouldn't technically qualify. i usually say he has "asperger-like' behaviors that i beleive are due to pandas - it seems to explain it well. i have always seen the concept of pandas being on the spectrum as a positive for autism that any similars may point to medical explanations rather than a negative that pandas is being 'thrown in' with autism.

[nicklemama]

I believe they are two separate entities. We were told my DS had Asperger's at age 6.5. At the time, I didn't know he had PANDAS but I knew something was terribly wrong. He did fit the criteria except for the age 3 or under at first presentation. The neuropsych told me he must have had symptoms I did not recognize, when I told him my DS had not been like this except for the last year. PANDAS symptoms can look like Aspergers/Autism in many children and I believe there are children out there who have PANDAS but are improperly diagnosed on the spectrum. My DS does not display Asperger symptoms when he is not in PANDAS exacerbation.

[beeskneesmommy]

One of the most identifying criteria for PANDAS is that the symptoms seem to appear quickly or "overnight". I do not know of Aspberger's or other identified Autistic suymptomology presenting like this. The very evident waxing and waning is also typical of PANDAS. I feel very strongly that there are a plethora of PANDAS children out there who are misdiagnosed.

[kimballot]

Many labels have been suggested for my son through the years.... ADHD, OCD, Tics, Tourette, Sensory Modulation Disorder, Dysgraphia, ODD, Depression, Bipolar, Developmental Coordination Disorder, Dyspraxia, Allergies... NONE of those diagnoses have stuck because they only last a couple of months at most and then he is "normal"...

 

So -

 

I've also been told he is "fine", "normal", "just a boy", "the product of an anxious mother and distant father", and "immature".

 

But ... I've never been told he had Autism, PDD, or anything on the spectru- nor has it every struck me that he might.

 

Why is this when so many children with PANDAS present with autisic symptoms?

 

I can only conclude that the part of the brain involved in my son's PANDAS is different than the part involved with children with autism symptoms... at least so far!!

[mkur]

When my son first got sick he went to the other end of the spectrum of typical autism - like William's syndrome. He was hyper and impulsive - had to talk but cannot carry on a normal conversation because he doesn't listen - it's mostly him talking. When things got worse because of seizures he moved to the autism side of the spectrum. With treatment (abx and ivig) he has swung back to the other side of the spectrum again - talky.

[T_Mom]

In a class today we were discussing characteristics of autism.

 

Someone asked me if I had ever seen someone "become autistic" at a later age.

 

The question stopped me cold.

 

For a minute I could not answer as all I could think of was what my older d looked like three summers ago when she had her sudden-onset episode.

 

The episode where she went through a month of moderate to severe OCD and then became mute, holding painful positions on her knees on the floor--spit in her mouth, eyes held closed, for 4 weeks...wetting herself, regressed, and we had NO answers--except for DianaP and Dr K talking us through (for which we will always be thankful.)

 

In one video we caught her in bed stretched out, eyes closed, spit collected until her cheeks were puffed, moving her head from side to side. She had choreaform movements of her hands, finger twitching when her arms were extended at her sides. Her reactions during this time were autistic-like, no doubt.

 

I couldn't answer the question, as I wanted to--which was YES, I have seen someone "become autistic" at a later age--...and then that same girl became

"un-autistic."

 

I thought about this issue for the rest of the day.

Edited July 7, 2011 by T.Mom

[beeskneesmommy]

In a class today we were discussing characteristics of autism.

 

Someone asked me if I had ever seen someone "become autistic" at a later age.

 

The question stopped me cold.

 

For a minute I could not answer as all I could think of was what my older d looked like three summers ago when she had her sudden-onset episode.

 

The episode where she went through a month of moderate to severe OCD and then became mute, holding painful positions on her knees on the floor--spit in her mouth, eyes held closed, for 4 weeks...wetting herself, regressed, and we had NO answers--except for DianaP and Dr K talking us through (for which we will always be thankful.)

 

In one video we caught her in bed stretched out, eyes closed, spit collected until her cheeks were puffed, moving her head from side to side. She had choreaform movements of her hands, finger twitching when her arms were extended at her sides. Her reactions during this time were autistic-like, no doubt.

 

I couldn't answer the question, as I wanted to--which was YES, I have seen someone "become autistic" at a later age--...and then that same girl became

"un-autistic."

 

I thought about this issue for the rest of the day.

[jdude]

Two distinct things that can co-exist. My son is not on the autism spectrum at all. He is what some call "classic" PANDAS. A typical child who suddenly "exploded" with symptoms (OCD, tics, separation anxiety). With treatment, he is doing much better, symptoms wax and wane with strep exposure. If you met him you would have no idea anything was different with him, unless he was in an exacerbation period.

[beeskneesmommy]

jdude, agreed - my son is the same - prior to this weekend when he had a flare-up, you would never know he was ill unless I told you and he has no other diagnosis than PANDAS. His PANDAS doc told me that kids with Autism tend to be more susceptible to PANDAS, thus confusing diagnosis. She thinks that it has something to with Autistic kiddos having a more leaky blood brain barrier. She seems to think that they are 2 separate entities as well.

[GraceUnderPressure]

Research would seem to indicate that, in both conditions the causes vary & the areas of the brain affected vary - any overlap most likely occurs simply because both conditions involve inflammation of the brain & detoxification issues. It will be interesting (to say the least) to see what finally ends up being used as the distinguishing characteristic(s) to separate all these.

 

My ds19, whose PANS has been very slow onset till recent years, was very hard to figure out. We thought it might be what some were calling "shadow syndrome" of Asperger's initially. Then he seemed to fit more into the category of nonverbal learning disorder. Then the tics began picking up speed & we eventually landed on the Tourette's diagnosis w/a comorbid attention deficit.

 

There is NO autism, no Aspergers, no Tourette's, none of that in our family tree (except a 6mo period during which my mother who had just become a teen developed a throat-clearing tic out of nowhere, & once it went away, it never came back - wanna bet she had been sick shortly before that appeared?). We can see vague traits in some family members & in ourselves, but only one or two rise to the level of somewhat quirky - certainly no dysfunction at all & nothing that comes even close to resembling what is going on with my kids. There ARE plenty of immune issues on both sides, however.

 

Even before I learned about PANDAS, I looked at my 5 kids (TS, mild dyslexia&impulsivity, PDD-NOS, ADHD, & food intolerances) & told my DH, their symptoms & the severity vary widely, but the one thing all of their issues have in common is that their immune systems are impaired to varying degrees.

 

So for those who believe that autism is simply one of many diagnoses of immune impairment, I guess they would see autism & PANS as being together on that sort of spectrum. But the fact that there are distinct symptoms distinguishing the two would certainly preclude us from speaking of them interchangably or synonymously.