yuck, I thought Leckman was okay

[jayjay]

Then there are the kids like my son who I had no idea even had strep because he showed no normal strep signs... so by time I figured out pandas and the strep connection with my son who tests positive in a culture but with no symptoms but tics and behavior it was way more than 48 hours... so I have no idea how quick the onset even was.

 

 

 

 

 

Why is Leckman taking such a negative stance? I thought he got it.

 

http://consults.blogs.nytimes.com/2010/03/...problemsrop/?hp

 

Go get 'em bloggers!

After reading the responses to this so far, I see some are concerned about the narrow definition being used in the article above for defining PANDAS. I really do not know how I feel about this myself. Is it going to be within 48 hours of strep? Or is it going to be the severe and debilitating onset? Does everyone really always have both? I also notice the last statement, where they say tics are not REALLY a big feature in all this. It sounds like they mean the OCD, separation anxiety and handwriting issues are more at play. But, it seems to me the handwriting deterioration would be more aligned with a tic problem.

 

If this is the criteria they use: within 48 hours of strep a severe onset of OCD, separation anxiety and handwriting issues, my son would not qualify for the study. But of course, I am still deciding myself if ds9 is PANDAS or TS. It's just that I keep getting this nagging feeling in my gut that there is more to it. I'm not sure being this narrow is a good thing, that's all. If we only use kids in a study with these limited issues and associate it with strep only, we may be back to what Kurlan found. But maybe not, Swedo kind of proved it before.

 

It is all so very confusing to me....

We have personal experience with Dr. Leckman. He is a very kind and compassionate Dr. He evaluated my son last summer after my son spent two weeks in the psych ward at Yale. I know Dr. Leckman is a PANDAS believer, but looks for very specific criteria. He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.” Logically, I could understand what he was saying but in my heart I knew we were on the right track. Needless to say, we were very disappointed with the outcome of the evaluation, but he did suggest that from that moment on, we document everything, and if he had a sore throat or his behavior changed, get a culture done. Long story short, we ultimately did get a PANDAS diagnosis with Dr. Leckman’s help. These specialists can only go by what they have seen, read and researched. We are the ones that live in this crazy PANDAS world 24/7 and know that there are exceptions to all the PANDAS “rules” (things like titers) and it is not as “cut and dried” as we all wish it were. If that was the case, our kids would all be cured and none of us would have to use this forum. : )

[EAMom]

He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.”

 

I have to agree with Dr. T. who said that the parents on this board know more about PANDAS than 99% of the docs out there. I just think some of these docs (even Dr. Leckman, who has great intentions) might have some trouble with diagnosis just b/c he/she hasn't "lived it" first hand. Also, they also don't always "get" that this dz might not have sudden onset, that symptoms can vary greatly from child to child (compare "sneezing" Lauren Johnson vs. my dd who had severe OCD/anorexia/bi-polar beh.), that some kids might have "chronic" symptoms for years, that some kids are able to function (perhaps not optimally) at school, that symptoms can be more subtle (ie not all PANDAS is full-blown), that strep titers might be low, that kids can have strep throat without symptoms (sore throat, fever), that strep can be in non-throat locations, that PANDAS kids react to non-strep illnesses....

Edited March 20, 2010 by EAMom

[memom]

He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.”

 

Very interesting. My 17yodd was diagnosed at 16yo after she experienced an explosion of symptoms including severe OCD after another strep infection, but in retrospect had been showing milder symptoms of quirky behavior for many years (at least 4 maybe more). It was in fact that she went from a good student to failing every class that we all became aware how sick she had become. But no sudden onset severe symptoms as the original start of this back when she was in elementary school, functional but quirky. It wasn't till a series of chronic strep infections that pushed her over the edge to not functional. We watched her symptoms get even worse about a year later when she got a bad strep infection again. I knew what to watch for and it was remarkable. Explosion again. The problem is, not returning to functional baseline since 15yo. So we too would not have fit the criteria. But somehow surgery, antibiotics and two month long steroid bursts have gotten her to 75%. Definate Pandas. Any stress or illness now triggers worsening symptoms.

Hoping for IVIG soon. No college next year. She has lots of repair work to do both medical and educational.

 

Ellie

[LNN]

He told us that our son had a 20% chance of having PANDAS, the main reason being that my son could “function” at school. He said that it would be virtually impossible for him to turn his behavior "on and off.”

 

I have to agree with Dr. T. who said that the parents on this board know more about PANDAS than 99% of the docs out there. I just think some of these docs (even Dr. Leckman, who has great intentions) might have some trouble with diagnosis just b/c he/she hasn't "lived it" first hand. Also, they also don't always "get" that this dz might not have sudden onset, that symptoms can vary greatly from child to child (compare "sneezing" Lauren Johnson vs. my dd who had severe OCD/anorexia/bi-polar beh.), that some kids might have "chronic" symptoms for years, that some kids are able to function (perhaps not optimally) at school, that symptoms can be more subtle (ie not all PANDAS is full-blown), that strep titers might be low, that kids can have strep throat without symptoms (sore throat, fever), that strep can be in non-throat locations, that PANDAS kids react to non-strep illnesses....

 

I see an opportunity for another "Buster"-like table here.

 

If you started with Swedo's original definition (the 5 core symptoms plus the dozen secondary symptoms), how would this community refine the definition? You want to include kids, but you also have to come up with something that differentiates it from traditional OCD/TS/ADHD. "Sudden onset" is one of those traits that seems to distinguish PANDAS kids from other kids as long as you expand "sudden" to include "or dramatic increase e.g. an 18 point jump on the YBOCS scale" - meaning you can have low level stuff all the time but that you see a "sudden" exacerbation in connection with exposure/infection with an agent (bacterial or viral). Something that distinguishes behaviors from the traditional waxing/waning pattern - e.g. "sawtooth"

 

What would we suggest as a diagnostic questionnaire that would help a doctor decide if PANDAS should be explored vs. traditional TS/OCD?

 

I will start a new thread if anyone's interested in pursuing this...