Kurlan and Swedo -- an analogy

[T_Mom]

Kim -- the little response article by Swedo--fantastic! Thank you for posting that!

[Buster]

I responded when this article first came out in http://www.latitudes.org/forums/index.php?...art=#entry49411

 

Swedo's comments are great. Probably, the most important line in her response however, is the one least likely to be understood. She writes:

 

"In PANDAS, as in the model disorder Sydenham chorea (SC), prompt recognition and treatment of GAS infections is effective in preventing neuropsychiatric sequelae. [4]"

 

What Kurlan, Kaplan, Shrag, ... and others are all missing is that PANDAS is thought to come from "untreated" streptococcal infection. This is the critical piece of information in the pathogenesis and what is so darn annoying about Kurlan, Kaplan, Singer papers. The folks at John Hopkins keep writing about kids "treated" for streptococcal infections rather than looking at a population who present with psychoneurological signs and checking if they have an untreated strep infection.

 

I seriously question the reasoning of these folks -- we know that treating GABHS with antibiotics lowers the incidence of ARF and SC. Duh!

 

So to run an experiment to test the PANDAS pathogenesis you either:

1) get a bunch of kids check them for strep and don't treat them -- yikes, try to get that past an IRB

2) get a bunch of kids with psychoneurologic issues and look for a cause -- what Swedo did

 

You most certainly don't

1) get a bunch of kids, check them for strep, treat them and then complain that you don't see PANDAS correlations! -- What Kurlan, Singer, Kaplan ... have done.

 

Arrggh

 

I hope Swedo keeps hammering this point home.

 

 

Buster

[kimballot]

So to run an experiment to test the PANDAS pathogenesis you either:

1) get a bunch of kids check them for strep and don't treat them -- yikes, try to get that past an IRB

2) get a bunch of kids with psychoneurologic issues and look for a cause -- what Swedo did

 

You most certainly don't

1) get a bunch of kids, check them for strep, treat them and then complain that you don't see PANDAS correlations! -- What Kurlan, Singer, Kaplan ... have done.

 

Arrggh

 

I hope Swedo keeps hammering this point home.

 

 

Buster

Buster - I've also wondered about the neuro psychiatric meds that the kids took - particularly in Kurlan's studies. It looks to me like the kids were allowed to continue on whatever tic and OCD meds they were currently taking. If the tic and OCD meds helped at all, they would decrease the symptoms of the exacerbations. Therefore, if the kids were exposed to strep and were having an exacerbation, it might take a very long time to notice it... or the strep may clear before it was noticed at all. Then - when you go back and look for a correlation between strep and exacerbations of tics and OCD in the PANDAS group and you compare it to the non PANDAS group to see if there is a difference and ... um... it's not there.

 

Wouldn't we have to remove kids from meds that mask symptoms to really do the study right? Of course that would not get past IRB or parents either if the meds are helping.

 

Am I reading this right?

[Buster]

Last year I went after the underlying longitudinal study here: http://www.latitudes.org/forums/index.php?...art=#entry26571

 

I raised the following seven methodological issues:

• This study is about long-term tic disorders in older kids (11-12) and not about sudden onset PANDAS (mean age 7.5).
  
• The sample of children were drawn from a Tourette Subject group where children had tics > 3 years with no remission for > 3 months.
  
• The study did not control for puberty
  
• The diagnostic criteria used by Kurlan for his purported PANDAS group was not the same as used by Swedo or Snider.
  
• The subjects exhibited no OCD behavioral changes over a 2 year period and were very different from Swedo's/Snider's subjects
  
• The subjects were all on numerous anti-psychotic, alpha-agonists, and mood stabilizers.
  
• The study broke the blind and informed pediatricians if the child was positive for GABHS -- PANDAS (like SC) is a sequelea from untreated GABHS -- not treated GABHS
  

It was a very flawed study. So yes, to actually test these kids, you'd need to get kids who aren't currently on heavy anti-psych meds -- you could then check whether antibiotics or anti-psych better control symptoms.

 

Now that's could be an interesting "placebo" test.

 

Do a double-blind cross over study with anti-psych on one side and antibiotics on the other -- oh wait, one of those is pretty dangerous drug with horrible side effects (including activation and carrying a black label for suicide). Maybe we should be careful about prescribing those to kids.

 

Buster

Edited May 2, 2010 by Buster

[peglem]

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

[Buster]

Peglem, I'm sorry, I should have not been so harsh in my comment regarding the doctors. They are doing the best they can with the available research. I'm just frustrated at some researchers who use provocative titles and have flawed studies.

 

It seems like they we're all doing an experiment with our kids with anti-psych drugs when we can't seem to get funding for testing the effectiveness of antibiotics or IVIG for neuropsych symptoms.

 

I'll revise my earlier post to soften the criticism.

 

Buster

 

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

[kimballot]

Do a double-blind cross over study with anti-psych on one side and antibiotics on the other -- oh wait, one of those is pretty dangerous drug with horrible side effects (including activation and carrying a black label for suicide). Maybe we should be careful about prescribing those to kids.

 

Buster

 

LOL - thanks ... anti psych meds are fine if that is what is best for the child... but I am with you that we need to address the underlying problem first IF there is strep/inflammation etc.

 

Thanks for your other post tonight on the 2008 articles. Good to have that freshly available!

[peglem]

Peglem, I'm sorry, I should have not been so harsh in my comment regarding the doctors. They are doing the best they can with the available research. I'm just frustrated at some researchers who use provocative titles and have flawed studies.

 

It seems like they we're all doing an experiment with our kids with anti-psych drugs when we can't seem to get funding for testing the effectiveness of antibiotics or IVIG for neuropsych symptoms.

 

I'll revise my earlier post to soften the criticism.

 

Buster

 

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

Oh, no, I already thought that about my daughter's doctors! I didn't think you were criticizing all doctors, just bad study designs. I used to be very angry with doctors who would not help me- but, I've come to realize that they do help many children, just couldn't figure mine out. (but they should have tried.)

[EAMom]

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

 

Peglem, do you mean symptomatic as in "sore throat/fever" or symptomatic as in behavioral changes? They never checked our kids when they were sick (fever, +/-vomiting-which I know know is a strep sign) b/c my kids didn't get the typical red sore throat that makes people think "strep". Every illness was presumed viral...until we started insisting on strep tests when dd was hosp. b/c of PANDAS (age 7.5). That's pretty bad to go until age 7.5 years, seeing multiple docs, for multiple illnesses and NEVER getting a strep test.

[peglem]

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

 

Peglem, do you mean symptomatic as in "sore throat/fever" or symptomatic as in behavioral changes? They never checked our kids when they were sick (fever, +/-vomiting-which I know know is a strep sign) b/c my kids didn't get the typical red sore throat that makes people think "strep". Every illness was presumed viral...until we started insisting on strep tests when dd was hosp. b/c of PANDAS (age 7.5). That's pretty bad to go until age 7.5 years, seeing multiple docs, for multiple illnesses and NEVER getting a strep test.

They didn't look in her throat, but she had green nasal gunk and fevers, drooled like crazy (hurts to swallow your spit?)...Seriously, because she was dx'd autistic they couldn't see regular illness! She did have the behaviors as well, but those, of course were considered autism as well. I'd understand if it was just the behaviors. She had a couple instances of joint pain, couldn't walk for 3 days once- found nothing wrong with her.