How many affected

[Buster]

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

Edited April 16, 2010 by Buster

[thereishope]

Well, this is Swedo's theory as relayed in Scientific American Mind through the writer of the article...

 

http://www.scientificamerican.com/article....-throat-to-mind

 

"A more accurate method of diagnosing PANDAS could help get affected kids the right treatment—and Swedo estimates that these kids may make up as much as 25 percent of children diagnosed with OCD and tic disorders, such as Tourette syndrome."

 

So...if you say there are 1M kids w/ OCD and 1M kids w/tics disorders, that means... 1/2 million kids are PANDAS. But, like you said, how many carry a co-diagnosis.

Edited April 16, 2010 by Vickie

[peglem]

But then, how many PANDAS kids have been dx'd w/ bipolar, autism, ODD...other psych diagnosis? I think this is much bigger than anyone realizes, and I think before children are given psychiatric diagnosis they should be screened for infectious agents and treated accordingly.

[Stephanie2]

peglem brings up an excellent point. my ds5 was dx'd with SPD and anxiety and depression. the psych totally missed the tics and OCD symptoms. Not to mention, my ds2 was just confirmed to have PANDAS and we have not him evaluated for other diagnoses and we probably never will. So there are 2 kids right there that are not counted. I also think that my neices have had pandas episodes...possibly 2 more...

[Buster]

But then, how many PANDAS kids have been dx'd w/ bipolar, autism, ODD...other psych diagnosis? I think this is much bigger than anyone realizes, and I think before children are given psychiatric diagnosis they should be screened for infectious agents and treated accordingly.

I totally agree. I started pulling stats for Autism, Bipolar, etc. I think the travesty here is how many kids end up on very significant psych meds which mask symptoms but don't address cause. I was very happy to see in the DSM-V that "tics due to a general medical condition" and "anxiety disorder due to a general medical condition" are both there.

 

I was trying to figure out which medical condition would likely be used for coding. Seemed any of these are likely:

279.0 -- Deficiency of humoral immunity

or 279.03 -- Congenital hypogammaglobulinemia

or 279.10 -- Immunodeficiency with predominant t-cell defect unspecified

or 279.4 -- Autoimmune disease not elsewhere classified

or 323.4 -- Other encephalitis due to infection classified elsewhere

or 323.62 -- Other postinfectious encephalitis and encephalomyelitis

 

and then finish with either:

041.00 -- Streptococcus infection in conditions classified elsewhere and of unspecified site streptococcus unspecified

 

I also agree the the direct cause should be investigated before just treating symptoms. Sort of before prescribing pain meds for "chest hurts" perhaps look for the sword sticking out or the signs of a heart attack -- likely treated differently

 

Buster

[Alex]

I am pretty sure that Dr. K has said that he believes that all OCD is PANDAS/PITANDS inititated. Not sure where this belief comes from. Maybe every OCD case he has seen he has been able to trace back to an infectious precursor. It would be interesting to ask him and see what his reasoning is.

 

Also, I've seen Dr. Trifilleti say that he believes PANDAS/PITANDS is more common then Autism.

[Worried_Dad]

That's the real tragedy of all this, seems to me. I recall Dr. Geller's jacket quote for Saving Sammy where he said it "may well hold the key to curing the lives of millions of others." And in the early articles, I believe I recall Dr. Swedo stating that her team believed that up to a 3rd of all OCD and Tourette's cases might fall into the PANDAS subgroup.

 

If they're right, then PANDAS / PITAND isn't a rare disorder at all. It may, in fact, be the most common "stealth disorder" destroying the lives of children, made more devastating by the consistent misdiagnoses and utter lack of sympathy engendered by so many in mainstream medicine.

 

Hard to know at this point... but the possibilities are haunting!

 

 

I am pretty sure that Dr. K has said that he believes that all OCD is PANDAS/PITANDS inititated. Not sure where this belief comes from. Maybe every OCD case he has seen he has been able to trace back to an infectious precursor. It would be interesting to ask him and see what his reasoning is.

 

Also, I've seen Dr. Trifilleti say that he believes PANDAS/PITANDS is more common then Autism.

[Fixit]

JMHO...just like i posted at doc t s site I think its all pand/ppit and pit/pan is the umbrella or spectrum...and all the conditons follow different ribs or coombos there of...and may only follow the rib part way.....

now add in lymes (hard to find) or conditons like cronees or celiacs...makes it very difficult to point to..."oh its this"...becasue there are so many triggers...and thats why docs don't acknowledge it, because with these condtions...i would guess more than any other.....no 2 patients are the same...or have the same exact trigger....though infections(which one)...seem to be the main trigger...

JMHO

I wonder if crones or celiacs can be triggered by an infection???

 

 

 

That's the real tragedy of all this, seems to me. I recall Dr. Geller's jacket quote for Saving Sammy where he said it "may well hold the key to curing the lives of millions of others." And in the early articles, I believe I recall Dr. Swedo stating that her team believed that up to a 3rd of all OCD and Tourette's cases might fall into the PANDAS subgroup.

 

If they're right, then PANDAS / PITAND isn't a rare disorder at all. It may, in fact, be the most common "stealth disorder" destroying the lives of children, made more devastating by the consistent misdiagnoses and utter lack of sympathy engendered by so many in mainstream medicine.

 

Hard to know at this point... but the possibilities are haunting!

 

 

I am pretty sure that Dr. K has said that he believes that all OCD is PANDAS/PITANDS inititated. Not sure where this belief comes from. Maybe every OCD case he has seen he has been able to trace back to an infectious precursor. It would be interesting to ask him and see what his reasoning is.

 

Also, I've seen Dr. Trifilleti say that he believes PANDAS/PITANDS is more common then Autism.

[Suzan]

I wonder if crones or celiacs can be triggered by an infection???

 

 

Very interesting thought about celiac! Wow!

 

Susan

[Nita]

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

Edited April 16, 2010 by Nita

[JAG10]

I remember Dr. T mentioning a few months ago a group at Yale was conducting a PANDAS- like study with ADHD characteristics, rather than OCD +/- tics. Has anyone heard of this? Maybe I'll ask him to elaborate or post a link on his site.

[Nita]

We were told by Dr. K. that our son, 13 yrs, has had PANDAS since he was about 3 or 4. The overnight OCD didn't show up until he was 12. Before that he had all the other PANDAS symptoms, worsening over time, such as ADHD, separation anxiety, tics, regression in age appropriate behaviors, regression in writing, etc. Quite possibly there are other kids with symptoms such as our son and the OCD never appears so they just treat the ADHD, the learning problems, the behavior problems - which they did with my son and his anxiety just kept increasing. Just a thought. I remember Dr. K. told us that he has some students who estimate the number of PANDAS kids in the millions (not sure if that is worldwide.) We didn't ask how they arrived at the number. I was looking at the history of Tourettes (which my son was diagnosed with when he was 9 - if only I had known about PANDAS then - or had his neuroligis), I came across this:

 

In 1884 Charcot gave a new assignment to Gilles de la Tourette, namely, to reclassify all movement disorders, or, to "sort out the chaos of the choreas"7,9,12,14. In the same year Gilles de la Tourette published his first important article on three strange movement disorders, in which he discussed the cases known as "Jumping Frenchmen of Maine", Latah (described in Malaysia" and Myriachit (first described in Russia)7,9,12,14. These diseases, which are now classified as startle diseases, were considered at the time to be variants of chorea (as opposed to what was called true chorea, or echorea) and to have an hysterical etiolo

 

 

Interesting that tics were first classified as choreas. Full article here: http://www.scielo.br/scielo.php?script=sci...2X2008000600035

 

 

 

m

er

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

[bubbasmom]

Buster we really appreciate all of the effort you put into PANDAS. I especially appreciate this post as I've had yet another week of 'breaking in new people' at the school distsrict. Just when you get one teacher or principal or administrator straightened out on the whole deal, there's a shift such as a new semester or people changing positions. I feel like a broken record. You get tired of the 'well I've never heard of such a thing'. Oh, well then, it must not be true if YOU have never heard of it!!!

It's not really THAT UNCOMMON.

[Stephanie2]

Also my son was given the dx Cognitive Disorder - Not Otherwise Specified. And to comment on Alex's comment about Dr. K saying that all OCD is pandas/pitand initiated. This may be true because in my son's case he recently developed a worsening of OCD when he developed a klebsiella infection due to the continued use of antibiotics (2 steps forward, one step back). So now he has to take vancomycin in addition to zithromax. So, even when his PANDAS is under control, if he has bacteria in the gut he still has OCD (actually much worse than any pandas episode). Would be interesting to run labs on all OCD patients to see what other infections may be there even if no strep/pandas.

 

Stephanie

 

But then, how many PANDAS kids have been dx'd w/ bipolar, autism, ODD...other psych diagnosis? I think this is much bigger than anyone realizes, and I think before children are given psychiatric diagnosis they should be screened for infectious agents and treated accordingly.

I totally agree. I started pulling stats for Autism, Bipolar, etc. I think the travesty here is how many kids end up on very significant psych meds which mask symptoms but don't address cause. I was very happy to see in the DSM-V that "tics due to a general medical condition" and "anxiety disorder due to a general medical condition" are both there.

 

I was trying to figure out which medical condition would likely be used for coding. Seemed any of these are likely:

279.0 -- Deficiency of humoral immunity

or 279.03 -- Congenital hypogammaglobulinemia

or 279.10 -- Immunodeficiency with predominant t-cell defect unspecified

or 279.4 -- Autoimmune disease not elsewhere classified

or 323.4 -- Other encephalitis due to infection classified elsewhere

or 323.62 -- Other postinfectious encephalitis and encephalomyelitis

 

and then finish with either:

041.00 -- Streptococcus infection in conditions classified elsewhere and of unspecified site streptococcus unspecified

 

I also agree the the direct cause should be investigated before just treating symptoms. Sort of before prescribing pain meds for "chest hurts" perhaps look for the sword sticking out or the signs of a heart attack -- likely treated differently

 

Buster

[Worried_Dad]

I myself happen to have Crohn's disease. Not surprisingly, researchers now strongly suspect that Crohn's is an autoimmune condition triggered by a bacterial infection. Here are a few links on recent research in this area:

 

Study Supports Bacterial Cause for Crohn's

 

How Bacteria In Cows' Milk May Cause Crohn's Disease

 

Sure seems like a lot of bad stuff is autoimmune-based and infection-triggered, eh? And this vulnerability seems to run in us PANDAS / PITAND families.

 

 

I wonder if crones or celiacs can be triggered by an infection???

 

 

Very interesting thought about celiac! Wow!

 

Susan