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qannie47

Dr. Leckman?

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Hi. Have any of you ever heard of a Dr. Leckman? Yesterday I received a voicemail from him out of Yale. He said that he wanted to talk to me about my son and his IVIG treatment. He gave me his direct line and asked me to call him today. I googled him because I did not know who he was. He seems pretty impressive and a big player in the Pandas arena. I am not sure where the conversation will lead and what he wants. One of the researchers that I have been in contact with must have spoken to him about us. It looks like he is doing an independent study in conjunction with the current NIMH that is in progress now. Anyway, any feedback on him?

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Leckman is a good guy. He's directly involved with the NIMH IVIG study. He is a big name in the Tourette's world and was once on the fence about Pandas and collaborated in research studies conducted by the two close-minded, ego-driven Pandas naysayers, Kurlan and Singer. However, in recent years, he has come to embrace Pandas and is now a supporter.

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Hi - I spoke to him on the phone about 4-5 years ago when our dd was first dx'd.

 

He was kind enough to talk to me for well over an hour (no billing). He was patient in his explanations and seemed to be one of those rare doctors who is both great at what they do and humble. He was genuinely interested in our story and appeared to be more concerned with getting kids well than his own prestige/career. Can you tell I really liked him?!

 

 

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Wow, please follow up with us and let us know how the phone call goes. Maybe he is trying to coordinate another study of his own. That would be interesting to know. I would definitely return his call.

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He is part of the NIMH IVIG study. There are two practice sites...Yale child study center in CT and NIH in Bethesda. Please call him. Getting into that study is like winning the treatment lottery.

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Spoke to Dr. Lectman. He was wonderful. I asked him what the purpose of his phone call was and he said, "I understand that you have been talking to our researcher at Yale and that you have some concerns about IVIG, and I would like to talk to you and perhaps answer any questions you might have. " I was stunned....He called because he cared...Anyway, he was really nice. He took the time to explain why there are so many "unanswered" questions about this disorder. I questioned him about Dr. K's claims that Ivig is a cure and that I have found contradiction in my research. He said that Ivig is considered to be a very promising treatment for these kids, and yes, there have been cases that there has been complete recovery after just one treatment or two. He did go on to explain what a mixed bag of nuts it is, and that because it is rare, the clinical trials usually involve few children and unfortunately that has made it more difficult because you really need to see consistant, repetitive results to really come up with "hard" evidence to show effectiveness of treatments as well as understanding the etiology. He was really nice and said that he knew Dr. K personally, that in fact he just had dinner with him. He said, "Dr. K knows more about treating kids with ivig more then anybody. He is a brilliant man and I would tell you to go ahead with his treatment. If I had a kid with Pandas, My money would be on Dr. K in helping him". I asked him if he is doing an independent study, he said no. That what he is doing is that he is involved in the screening of potential kids for these trials. He felt that another issue that the studies have had is that perhaps some of these kids in the study were not "true" panda kids. He felt, that this would explain the "mixed" results. So he now personally screens these kids on some level. I talked to him about my son and he felt that he did meet the classic criteria and that we are on the right path. That made me feel good in the sense that he gave me some hope back. Anyway, just wanted to share my conversation with all of you.

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Hi,

 

Leckman is an extremely reasonable doctor and has seen now first hand the PANDAS kids. He didn't retract his prior papers (which is a shame, but has said publically that he didn't think he had PANDAS kids in his prior trials and instead had kids with Tourettes who met most (if not all) the PANDAS criteria as interpreted at the time). He frankly thought sudden onset or episodic course was a throw away line as it applied to any tic because they all have sudden onset and wax/wane. It took him seeing a PANDAS kid before, during, and after an exacerbation to understand how different the sawtooth pattern of exacerbation was from the more wave like transitions associated with tics/traditional OCD.

 

Buster

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Leckman is mentioned in Neil Swidey's article on PANDAS:

 

"For Casoli-Reardon, PANDAS became even less of an abstraction when one of her sons developed it several years ago. She can identify with parents who find themselves completely unhinged by it. As for the critics from neurology, she says, “If you’ve ever had a child with PANDAS, you would never, ever say that it doesn’t exist.”

 

***

 

THAT DISTINCTION may turn out to explain a lot about the battle.

 

Dr. James Leckman, a professor of child psychiatry at Yale and specialist in Tourette’s syndrome, was the lead author on what is perhaps the most persuasive study challenging the PANDAS hypothesis. That long-term study, published in 2011, found no compelling evidence linking the exacerbation of tic and OCD symptoms to new strep infections.

 

Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way.

 

Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point.

 

Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.”"

 

http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html

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