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EAMom

great article in St. Louis Today

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Oh, just let me scream when I read these ignorant comments from what are supposed to be doctors.

 

 

Dr. Bradley Schlaggar, a neurologist at St. Louis Children's Hospital who has researched PANDAS, said he worries a renewed focus on the disorders might discourage some doctors and parents from pursuing other explanations for symptoms.

 

"I've seen kids on five, six different antibiotics for what is clearly Tourette syndrome that is not strep-triggered, and that's a problem," Schlaggar said.

 

 

‎^ This neurologist is really irritating. While he worries about PANDAS families trying multiple antibiotics, he apparently doesn't seem at all concerned about the PANDAS kids that go misdiagnosed for YEARS...losing their childhood and risking mental illness as adults while they are unsucessfully treated for Tourettes (or Conversion Disorder) with 1/2 dozen or more anti-tic and psych. drugs (including atypical anti-psychotics and SSRI's with black box warning labels). Why is it so okay to use muliple pscyh. drugs simultaneously on a young child, but antibiotics are taboo and "dangerous"?

 

It seems like it is the docs that diagnose Coversion Disorder and TS are the ones that don't want to "pursue other explanations for symptoms". But then again, these are the same docs that think they can "rule out" PANDAS with a single normal ASO.

Edited by EAMom

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I was so irritated by Dr Schlagger's comments that I missed the "research" bit. I'd love to see his research, seeing as how his name does not pop up in my mind when thinking about all the research papers I've read on the subject. Off to google. That's how I got my MD degree, LOL!!!

 

Ok, I'm back. His curriculum vitae listed all published articles and not one mentioned PANDAS. Interesting.

 

His areas of expertise are Cerebral Palsy, stroke, Tourettes and cognitive development

Edited by nicklemama

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I was so irritated by Dr Schlagger's comments that I missed the "research" bit. I'd love to see his research, seeing as how his name does not pop up in my mind when thinking about all the research papers I've read on the subject. Off to google. That's how I got my MD degree, LOL!!!

 

Ok, I'm back. His curriculum vitae listed all published articles and not one mentioned PANDAS. Interesting.

 

His areas of expertise are Cerebral Palsy, stroke, Tourettes and cognitive development

 

Oh, I assumed it meant he "researched" PANDAS on wikipedia! :wacko:

Edited by EAMom

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Oh, I assumed it meant he "researched" PANDAS on wikipedia! :wacko:

 

 

LOL, we all know if its in Wikipedia it must be true!

I should mention that I spent months trying to move the Wikipedia article (basically because of a single "editor").

 

On controversial topics, there are apparently some "rules" for the editors:

  • You need to cite review articles and not original research -- apparently to prevent incorrect interpretation
  • You need to cite review articles that have been out for a while -- otherwise it's too recent
  • You can't connect material from different articles -- this is considered original research

 

You can imagine with PANDAS that this is a bit tough since the editorials are largely written by John Hopkins authors.

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Oh, just let me scream when I read these ignorant comments from what are supposed to be doctors.

 

 

Dr. Bradley Schlaggar, a neurologist at St. Louis Children's Hospital who has researched PANDAS, said he worries a renewed focus on the disorders might discourage some doctors and parents from pursuing other explanations for symptoms.

 

"I've seen kids on five, six different antibiotics for what is clearly Tourette syndrome that is not strep-triggered, and that's a problem," Schlaggar said.

 

 

‎^ This neurologist is really irritating. While he worries about PANDAS families trying multiple antibiotics, he apparently doesn't seem at all concerned about the PANDAS kids that go misdiagnosed for YEARS...losing their childhood and risking mental illness as adults while they are unsucessfully treated for Tourettes (or Conversion Disorder) with 1/2 dozen or more anti-tic and psych. drugs (including atypical anti-psychotics and SSRI's with black box warning labels). Why is it so okay to use muliple pscyh. drugs simultaneously on a young child, but antibiotics are taboo and "dangerous"?

 

It seems like it is the docs that diagnose Coversion Disorder and TS are the ones that don't want to "pursue other explanations for symptoms". But then again, these are the same docs that think they can "rule out" PANDAS with a single normal ASO.

 

Ok - I'll play devil's advocate here - On one hand, I understand the underlying concern - when taken in context.

 

It's a conversation my pediatrician and I have had many times over the past 2 years as we've shared research, etc. In our case, it was discussed relative to my son's ADHD aspect of PANDAS, we've discussed many times that the ADHD (which is one of our stubborn symptoms) may be independent of our PANDAS and ultimately may not be treatable in the same way, if we got every other sypmtom under control with the abx except the ADHD, it may not be that we need a new abx or PANDAS treatment to try, we may need to understand that the ADHD is unrelated. (Turns out his ADHD is PANDAS related as we discovered during our happy time after the T&A!)

 

Our pediatrican is extremely PANDAS friendly and knowledgeable, and is willing to try mulitple abx if needed, but he also has says that it needs to be understood that TS and OCD are also still very real childhood conditions on their own, and while in his opinion, a larger share of it than commonly accepted is actually infection related, it's not always easy to convince a parent that it's just plain TS or OCD if they want it to be something "easier" like PANDAS.

 

And yes, we both chuckled when he said it because we both know there's nothing "easy" about this, at least not in my son's case!!!

 

Now - all that being said, I've read the article, and unless there was more to his quote that was not in the articlue, that doesn't seem to be his real concern. As we know, in reality it's the opposite, Dr's use the OCD/TS label to STOP looking at other causes - while I agree, if you've tried multiple PANDAS treatments and nothing has made a difference, it may be time to start opening your mind to other possibilities, but a straight TS/OCD dx without considering the root cause is the bigger issue on had. But he seems to imply that people who look beyond the TS/OCD dx are delusional.

 

Since I can at least understand his concern in a certain context...I'd like to say it was Dr. "overreported and overdiagnosed" that really cheesed me off in this article!

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As we know, in reality it's the opposite, Dr's use the OCD/TS label to STOP looking at other causes - while I agree, if you've tried multiple PANDAS treatments and nothing has made a difference, it may be time to start opening your mind to other possibilities, but a straight TS/OCD dx without considering the root cause is the bigger issue on had. But he seems to imply that people who look beyond the TS/OCD dx are delusional.

 

 

agreed.

 

And I should add that a PANDAS child that has been misdiagnosed with TS (or OCD, or ADHD) for *YEARS* is going to be harder to treat than a child that presents acutely with his first exacerbation. When we first "discovered" Azith (the 4th antibiotic we tried, so we would count as one of those delusional parents) it took tics 6 weeks (250mg/day for a 43 pound child) to go away! OCD/mood improved much more quickly (1-2 weeks), but if we were a primary tic child going to this doctor, do you really think we would have gotten more than 5 days of Azith to "test" if our dd had PANDAS?

 

 

While the child that is in his first exacerbation may even be "cured" (at least for the time being) with a simple 10 day course of Amoxcillin, this is unlikely to be the case with a kid with chronic PANDAS. Autoimmunity has set in. Longer term high doses of the right antibiotic may be needed to see a difference. A steroid burst, IVIG, or PEX may be needed for sustained improvement.

 

 

So, I get the impression this guy is thinking,"if 10 days of Amoxcillin didn't change the tics, it's not PANDAS and these parents are delusional to pursue this further" or "the single ASO we tested wasn't positive, so there's no evidence of strep and it can't be PANDAS". At the same time, he's playing whack-a-mole and on the 10th psych. drug to try to treat this "TS" symptomatically.

Edited by EAMom

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EAMom - you make an interesting point about these naysayer doctors. He implies parents trying 5 or 6 different abx are searching for something that isn't there, but yet these same doctors think nothing about trying dozens of "typical" treatments (psych drugs) when they don't seem to be working...at that point - whose the delusional one! :D

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Oh, I assumed it meant he "researched" PANDAS on wikipedia! :wacko:

 

 

LOL, we all know if its in Wikipedia it must be true!

I should mention that I spent months trying to move the Wikipedia article (basically because of a single "editor").

 

On controversial topics, there are apparently some "rules" for the editors:

  • You need to cite review articles and not original research -- apparently to prevent incorrect interpretation
  • You need to cite review articles that have been out for a while -- otherwise it's too recent
  • You can't connect material from different articles -- this is considered original research

 

You can imagine with PANDAS that this is a bit tough since the editorials are largely written by John Hopkins authors.

 

Use the White Paper as a review article.

 

Also, I hate the fact that the article mentioned that the girls in NY have been ruled out for PANS, because that's just not true. Dr. T. found that 7 out of 9 of the girls he's seeing tested positive for strep and/or mycoP. He's now treating them.

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Oh, I assumed it meant he "researched" PANDAS on wikipedia! :wacko:

 

 

LOL, we all know if its in Wikipedia it must be true!

I should mention that I spent months trying to move the Wikipedia article (basically because of a single "editor").

 

On controversial topics, there are apparently some "rules" for the editors:

  • You need to cite review articles and not original research -- apparently to prevent incorrect interpretation
  • You need to cite review articles that have been out for a while -- otherwise it's too recent
  • You can't connect material from different articles -- this is considered original research

 

You can imagine with PANDAS that this is a bit tough since the editorials are largely written by John Hopkins authors.

 

Use the White Paper as a review article.

 

Also, I hate the fact that the article mentioned that the girls in NY have been ruled out for PANS, because that's just not true. Dr. T. found that 7 out of 9 of the girls he's seeing tested positive for strep and/or mycoP. He's now treating them.

 

Actually, PANS doesn't even require an infectious trigger. But if you look at the white paper, they need certain symptoms beyond tics. PANDAS can be tic only (per the original 5 NIMH criteria), but not PANS.

 

The question is, what other symptoms do these girls have? I know one of the girls on TV mentioned panic/anxiety attacks. So, assuming the other girls are similar, they aren't "tic only."

 

So, these girls have something that is PANDAS-like (strep) and PITANDS (mycoplasma), and also possibly PANS depending on what other symptoms they have.

 

Which is interesting ... a tic only kid with that has evidence of strep as a cause would be PANDAS but not PANS. Other that that, most PANDAS kids would be also be PANS.

 

Hmmm... This makes me wonder if Conversion Disorder could fall under the PANS umbrella, it is acute onset after all????

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