PANDAS and Autism

[Debbie1]

Is a family more likely to have a child with autism if siblings have PANDAS?

 

I saw a few sites this morning that classify PANDAS as an autism spectrum disorder. I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder. Can anyone clarify?

 

Thanks.

[peglem]

I'll try, but just my perspective. I don't think PANDAS is an autism spectrum disorder. I think PANDAS is an immune disorder that can produce autistic behaviors.

 

Here's my best analogy:

 

Suppose you've injured your leg somehow. There is bruising, swelling, you limp. You can't run and you can only sleep in certain positions. The pain interferes with you sleeping very well at all. Now, supposing a group of psychiatrists gets together ( am picking on psychiatry because they tend to treat behavior without looking for underlying physical causes) and, observing all these traits pronounces it to be some kind of symdrome, named for the guy who spent years of his life observing and documenting people who have those traits in common. Let's call it Mymph Syndrome. That's autism- it defines a set of observable behaviors, but makes no allusion to causality.

 

Now, Mymph Syndrome may be caused by a broken bone, injured ligaments, a muscle or bone infection, or probably a lot of other things....but the cause still wouldn't change the fact the person has demonstrated all the necessary things to qualify for a Mymph dx. So autism syndrome (in any case the defining characteristics are somewhat general, and leave out a lot of significant things that seem to be prevalent in autism) probably has many different causes.

 

My daughter has been autistic from a young age...no medical professionals looked for an underlying cause until she was 10 years old. They seemed to accept that the symptoms she suffers from ARE the disease.

 

My observation from reading on this board is that almost everything people here are seeing as PANDAS symptoms, are things that are prevalent in autism as well. I'm thinking PANDAS may be one of the underlying causes of autism.

[EAMom]

I agree with Peglem.

 

Pandas may be one cause of autism (or autistic behaviors). The medical profession tends to confuse psychiatric symptoms (depression, autism, anxiety) with a true diagnosis. Nobody would accept "chest pain" as a diagnosis (it is a symptom, with many possible underlying causes), but they seem fine about calling "austism" or "depression" a diagnosis without worrying about an the underlying cause.

 

I would say that all PANDAS cases are auto-immune. Not sure about Autism...if all cases are auto-immune or just some.

 

Auto-immune issues tend to run in families...so it is possible that a child with PANDAS is more likely to have an autistic sibling. Not sure if I know of any though?

 

Also, I have heard that Autistic kids are more likely to have PANDAS. (Is this true?) But, if strep didn't exist would how many would still be autistic (but without PANDAS)? Perhaps whatever abnormality they have in their immune system that caused their autism also makes them more prone to having PANDAS?

 

So, I think there are kids that are:

1) Autistic with PANDAS: If strep didn't exist (as an initial trigger), they would still be autistic but not have PANDAS.

2) PANDAS (with autistic symptoms): If strep didn't exist (as an initial trigger), there would be no autistic symptoms.

3) Autistic with no PANDAS

4) PANDAS with no autistic symptoms

[EAMom]

I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder.

 

I agree with you that PANDAS could be called a "spectrum disorder" in the sense that it has varying degrees of symptoms and presentations.

[MomofJacob]

My son, who is 8 and has an ASD diagnosis, was just diagnosed with PANDAS. His CamKinase II score was extremely high (194). I am now trying to find a dr who can talk to our dr about the course of treatment. Antibiotics have not been that successful with him. I am wondering if anyone has had a child who was diagnosed with autism and then recovered with IVIG (and if they were also diagnosed with PANDAS)?

 

 

I agree with Peglem.

 

Pandas may be one cause of autism (or autistic behaviors). The medical profession tends to confuse psychiatric symptoms (depression, autism, anxiety) with a true diagnosis. Nobody would accept "chest pain" as a diagnosis (it is a symptom, with many possible underlying causes), but they seem fine about calling "austism" or "depression" a diagnosis without worrying about an the underlying cause.

 

I would say that all PANDAS cases are auto-immune. Not sure about Autism...if all cases are auto-immune or just some.

 

Auto-immune issues tend to run in families...so it is possible that a child with PANDAS is more likely to have an autistic sibling. Not sure if I know of any though?

 

Also, I have heard that Autistic kids are more likely to have PANDAS. (Is this true?) But, if strep didn't exist would how many would still be autistic (but without PANDAS)? Perhaps whatever abnormality they have in their immune system that caused their autism also makes them more prone to having PANDAS?

 

So, I think there are kids that are:

1) Autistic with PANDAS: If strep didn't exist (as an initial trigger), they would still be autistic but not have PANDAS.

2) PANDAS (with autistic symptoms): If strep didn't exist (as an initial trigger), there would be no autistic symptoms.

3) Autistic with no PANDAS

4) PANDAS with no autistic symptoms

[swim]

I'll try, but just my perspective. I don't think PANDAS is an autism spectrum disorder. I think PANDAS is an immune disorder that can produce autistic behaviors.

 

Here's my best analogy:

 

Suppose you've injured your leg somehow. There is bruising, swelling, you limp. You can't run and you can only sleep in certain positions. The pain interferes with you sleeping very well at all. Now, supposing a group of psychiatrists gets together ( am picking on psychiatry because they tend to treat behavior without looking for underlying physical causes) and, observing all these traits pronounces it to be some kind of symdrome, named for the guy who spent years of his life observing and documenting people who have those traits in common. Let's call it Mymph Syndrome. That's autism- it defines a set of observable behaviors, but makes no allusion to causality.

 

Now, Mymph Syndrome may be caused by a broken bone, injured ligaments, a muscle or bone infection, or probably a lot of other things....but the cause still wouldn't change the fact the person has demonstrated all the necessary things to qualify for a Mymph dx. So autism syndrome (in any case the defining characteristics are somewhat general, and leave out a lot of significant things that seem to be prevalent in autism) probably has many different causes.

 

My daughter has been autistic from a young age...no medical professionals looked for an underlying cause until she was 10 years old. They seemed to accept that the symptoms she suffers from ARE the disease.

 

My observation from reading on this board is that almost everything people here are seeing as PANDAS symptoms, are things that are prevalent in autism as well. I'm thinking PANDAS may be one of the underlying causes of autism.

 

Only based on our experience with our son and no medical support, I often wonder if some chldren are being diagnosed with Autism because of their PANDAS symptoms. I will say I thought our son was showing signs of Autism when the signs were actually his first PANDAS symptoms.

[Kayanne]

Is a family more likely to have a child with autism if siblings have PANDAS?

 

I saw a few sites this morning that classify PANDAS as an autism spectrum disorder. I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder. Can anyone clarify?

 

Thanks.

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder.

 

Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa.

 

Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family?

 

Am I making sense? Just my gut feeling...that's all.

[Fixit]

Is a family more likely to have a child with autism if siblings have PANDAS?

 

I saw a few sites this morning that classify PANDAS as an autism spectrum disorder. I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder. Can anyone clarify?

 

Thanks.

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder.

 

Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa.

 

Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family?

 

Am I making sense? Just my gut feeling...that's all.

 

i disagree...the pandas mom i just met, who's children met with swedo..if only once...but couldn't do study because of distance..daughter..ocd no tics..son tics.if ocd she didn't mention it

 

dh who i believe is pandas...tics...his older brother who had scarlet fever as child had a mild, short lived case of ocd in later years... that went away

 

or are we agreeing..,,no bother.. i just feel like we are too early 20-30yrs maybe 50 the way science runs, from shutting any doors...that's all

Edited September 2, 2010 by Fixit

[airial95]

Our pediatrician, who is by no means a PANDAS expert, but has treated several cases, and from what I've read here is among the more open minded/willing to learn guys out there - used a similar analogy to peglems to describe why he feels PANDAS SHOULD be an ASD. He agreed, that with autism, it's the symptoms that they are looking for, and that often there is no real search for an underlying cause. You have autism - that's it - here's what you can do to make the most of it. With PANDAS - the symptoms alone would qualify it to be ASD, and since we know the underlying cause, we can treat accordingly. He strongly feels (hopes might be a better word) that as the ASD is expanded and more clearly defined, more doctors would be open to looking for and treating the underlying cause. If PANDAS were considered on "the spectrum" so to speak, it might expose more children to treatment that may be misdx as "just" autistic.

 

I know I didn't explain that as well as he did - maybe if you pictured a kindly older gentleman with a white beard speaking it might make more sense

 

My dr went into this analogy when he mentioned the potential Aspbergers he suspects in our son. He said it's still to young to tell, and that it may be strictly PANDAS we're dealing with, and often they may be confused. When he saw that I was visibly freaked - he made a practical point: Whether we like it or not, if my son was dx autistic vs. just plain old PANADS - there would be more "doors" opened for him - with the insurance companies, school district, etc. - since autism is a more "respected" diagnosis.

 

So now I'll take it one step crazier:

If PANDAS were considered part of a broader definition of autism (using peglems idea that autism is a collection of symptoms) - think about the funding/research opportunities that may open up simply because it has a "category" that so many are aware of. And imagine the autistic kids that might be helped as that research grows and expands to identify other bacterial/infectious that may be the cause of their issues (Myco?).

 

It's my pie in the sky happy world way of thinking - but hey - it's almost the weekend, our son has bounced back quicker than ever and been on a constant upswing since his last strep infection a couple of weeks ago - so I think I'm allowed - just this once!

[Kayanne]

Is a family more likely to have a child with autism if siblings have PANDAS?

 

I saw a few sites this morning that classify PANDAS as an autism spectrum disorder. I thought it was a spectrum disorder in that there can be varying degrees of symptoms and different presentations. However, I didn't think it was an autism spectrum disorder. Can anyone clarify?

 

Thanks.

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder.

 

Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa.

 

Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family?

 

Am I making sense? Just my gut feeling...that's all.

 

i disagree...the pandas mom i just met, who's children met with swedo..if only once...but couldn't do study because of distance..daughter..ocd no tics..son tics.if ocd she didn't mention it

 

dh who i believe is pandas...tics...his older brother who had scarlet fever as child had a mild, short lived case of ocd in later years... that went away

 

or are we agreeing..,,no bother.. i just feel like we are too early 20-30yrs maybe 50 the way science runs, from shutting any doors...that's all

 

I think you misunderstand me. I do believe that PANDAS/PITANDS is a spectrum disorder…it has many symptoms from mild to moderate, and every person who has it presents differently and each exacerbation can also be different.

 

I don’t think that PANDAS/PITANDS falls under the umbrella of autism. With all of these neuropsychiatric disorders the symptoms overlap.

 

Both tics and OCD are symptoms of PANDAS/PITANDS (and can be caused by many other root causes)….not the disorder themselves. Certainly, I believe that family members can have different symptoms of the same disorder. The four people you listed could all have PANDAS—just different symptoms.

 

For example, I just think that if a family has had a child who developed regressive autism at 15mos, and has accepted that diagnosis, suddenly has another child who was normally developing and at around age 6 or 7 has a clear-cut PANDAS/PITAND – how likely is it really two different disorders? Or if you were the parent, wouldn’t you be looking into a PANDAS diagnosis for your autistic child?

[GraceUnderPressure]

I believe that autism & PANDAS are both autoimmune disorders of the CNS. Autism spectrum disorder has become sort of a catchall category for kids with problems caused by neuro-inflammation. In that sense, it would make sense to call PANDAS a form of autism.

 

My kids are pieces of the puzzle for me. All 5 of my kids have food intolerances to some degree & varying degrees of seasonal allergy crud - so their immune systems are all a little bit off. However, whether or not they have neurological issues & how severe they are all depends on what kind & amount of immunological challenges their bodies have had to cope with.

 

Vaccines in my first 4 upped their immune "sensitivity" or maybe "reactivity" would be more accurate - though #4 had the advantage that I had begun taking omega-3's before & during my pregnancy & breastfeeding so he was the least bad off & I stopped doing vax after his 12 mos series, but then he got hit with some clostridia overgrowth around 3yo which messed up his gut. Mercury exposure from dental amalgams to 1st & 3rd born left them the most messed up.

 

My 5th is the only one completely neurologically "normal" & has only a few food sensitivities. So I think there is some immune impairment or vulnerability in our kids that is being exploded by environmental insults.

[MomWithOCDSon]

I saw a few sites this morning that classify PANDAS as an autism spectrum disorder.

Thanks.

 

I'm curious about those sites. Can you post links? Thanks!

[mkur]

For Airial95:

 

The tourette syndrome assoc did some research on pandas but they could not prove pandas and a lot of the ts doctors don't believe or won't treat pandas. So ask your ped where do tourette and ocd fit in. The older children were given ts, adhd, ocd or ed labels. Aspergers is a relatively new label.

 

Your ped sounds wonderful and we need to clone him.

Edited September 2, 2010 by mkur

[airial95]

For Airial95:

 

The tourette syndrome assoc did some research on pandas but they could not prove pandas and a lot of the ts doctors don't believe or won't treat pandas. So ask your ped where do tourette and ocd fit in. The older children were given ts, adhd, ocd or ed labels. Aspergers is a relatively new label.

 

Your ped sounds wonderful and we need to clone him.

 

I'll ask him when I see him next week. I have to admit. I LOVE my pediatrician. He has been fantastic for us. And I love the fact that he's willing to learn. Everytime we see him he asks if I've come across anything new - or if I've read anything about x, y or z. It's wonderful. He runs a teaching practice too - so there are always student nurses and student PA's running around. And everytime he has a new one around he goes into GREAT detail about PANDAS with them - so he's passing it along to the next generation. He keeps threatening to retire once he finds someone he likes he can pass his practice along to. I told him that might not be a good idea - I can be quite the stalker