yuck, I thought Leckman was okay

[fuelforall]

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!

[thereishope]

I read it a from a few different angles. I do not like the controversial label. Actually, I hate that. However, I don't read the response as a big "anti PANDAS" rant. I read it as they believe PANDAS exists and the defintion should be changed, but they think parents are starting to think every TS or OCD is PANDAS. Now, I am not getting into the whole "would TS and OCD even exist if strep didn't exist" thing. I'm just thinking Leckman and the other doctor is saying there's a surgence of parents saying PANDAS and they are fearing the overuse of antibiotics.

 

Now, I don't know Leckman's stance on chronic PANDAS. From this article, I get that he is more for the sudden onset defintion. Does anyone know?

 

He also talks about a new IVIG study. Does anyone know the current status of that? i thought it was shelved for now?

 

If anything, that article backs up why a diagnostic test is neeed and why Cunningham should get funding.

[peglem]

From the link above:

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Does anybody know more about this replication study?

[fuelforall]

From the link above:

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Does anybody know more about this replication study?

 

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents.

Just sayin'.

[LNN]

I read it a from a few different angles. I do not like the controversial label. Actually, I hate that. However, I don't read the response as a big "anti PANDAS" rant. I read it as they believe PANDAS exists and the defintion should be changed, but they think parents are starting to think every TS or OCD is PANDAS. Now, I am not getting into the whole "would TS and OCD even exist if strep didn't exist" thing. I'm just thinking Leckman and the other doctor is saying there's a surgence of parents saying PANDAS and they are fearing the overuse of antibiotics.

 

Now, I don't know Leckman's stance on chronic PANDAS. From this article, I get that he is more for the sudden onset defintion. Does anyone know?

 

He also talks about a new IVIG study. Does anyone know the current status of that? i thought it was shelved for now?

 

If anything, that article backs up why a diagnostic test is neeed and why Cunningham should get funding.

 

I had the same take on it. I know he believes in PANDAS. Don't know his preference for definition, other than I suspect he's in the camp that would like to see "strep" dropped or changed to infectious agent. But that's speculation on my part.

 

I know he's been working with Dr Swedo and Dr Cunningham on getting the IVIG study resurrected. But I don't know the timing of when they hope to get started.

[nevergiveup]

The title attracts all the naysayers to read the article. Especially the docs whom don't believe. But the content is great. And it is exactly what is necessary to get the docs looking closer at each child with tics. Now they will start asking parents questions about handwriting, sleep habits and other symptoms when they present with tics. Maybe this is Leckmans reverse psychology, he does know a little bit about the human mind and how it works. Docs have to start looking deeper when a child presents with ocd and tics.

 

 

60615']

I read it a from a few different angles. I do not like the controversial label. Actually, I hate that. However, I don't read the response as a big "anti PANDAS" rant. I read it as they believe PANDAS exists and the defintion should be changed, but they think parents are starting to think every TS or OCD is PANDAS. Now, I am not getting into the whole "would TS and OCD even exist if strep didn't exist" thing. I'm just thinking Leckman and the other doctor is saying there's a surgence of parents saying PANDAS and they are fearing the overuse of antibiotics.

 

Now, I don't know Leckman's stance on chronic PANDAS. From this article, I get that he is more for the sudden onset defintion. Does anyone know?

 

He also talks about a new IVIG study. Does anyone know the current status of that? i thought it was shelved for now?

 

If anything, that article backs up why a diagnostic test is neeed and why Cunningham should get funding.

 

I had the same take on it. I know he believes in PANDAS. Don't know his preference for definition, other than I suspect he's in the camp that would like to see "strep" dropped or changed to infectious agent. But that's speculation on my part.

 

I know he's been working with Dr Swedo and Dr Cunningham on getting the IVIG study resurrected. But I don't know the timing of when they hope to get started.

[Fixit]

 

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents.

Just sayin'.

 

 

DITTO!!!!!!!!!!

[nevergiveup]

Peglem, Its called "stacking the deck". Hey Singer stacked his deck to make it look like pandas dont exist. (Hopkins). Swedo has to make sure she's got the kids with autoantibodies to prove this disease is helped from immunomodulators. If she has the wrong kids in her study, no one will ever prove ivig helps. Just my opinion. All docs "stack the deck" in their selection criteria, they want non biased results.

 

From the link above:

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Does anybody know more about this replication study?

 

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents.

Just sayin'.

[Worried_Dad]

Personally, I didn't find the article to be too concerning. And I did want to share this.

 

Have spoken with Diana P a number of times about Dr. Leckman. She raves about him: says he is just a wonderful, empathetic man who truly grasps the tragedy of this disorder and is beside himself about the plight of PANDAS children who are denied critical treatments.

 

When my son was in the grips of his "exorcist exacerbation" in Summer 2008, my wife and I were terrified and lost. Diana P gave me Dr. Leckman's contact info and recommended that I contact him. He responded quickly to my e-mail and suggested a phone call: no "phone consult," just him offering his time in the interest of helping a sick child. He was a super nice, compassionate person on the phone. I traded e-mails with him periodically after that, and he called me again last summer when we were again in the grips of the "PANDAS demon" and losing hope.

 

From speaking with him twice on the phone, I can reassure you: he gets it. He believes in PANDAS (maybe mostly the extreme variety, but he does not doubt its existence). He is working very hard - with Diana P, with Dr.'s Swedo and Grant at NIMH, with Dr. K and Dr. Cunningham - to try to compile incontrovertible proof for the skeptics and to get IVIG for needy kids.

 

Sometimes I think the good guy docs have to soften their message to avoid getting dismissed out of hand by colleagues who remain unconvinced. But Dr. Leckman is definitely one of the good guys!

[peglem]

Peglem, Its called "stacking the deck". Hey Singer stacked his deck to make it look like pandas dont exist. (Hopkins). Swedo has to make sure she's got the kids with autoantibodies to prove this disease is helped from immunomodulators. If she has the wrong kids in her study, no one will ever prove ivig helps. Just my opinion. All docs "stack the deck" in their selection criteria, they want non biased results.

 

From the link above:

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Does anybody know more about this replication study?

 

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents.

Just sayin'.

I understand- you have to choose subjects that you are certain about- to reduce variables. Its the reason my child will never qualify for studies, she just has too many variables. But, in practical application of what is learned from studies, doctors need to be able to interpret not just the objective testing and data, but consider how it applies in individual cases. Otherwise, the only people who will benefit from what is learned from the studies, is those who would qualify for the study in the 1st place, and that is denying care and treatment to a large population of people who need that help.

 

My daughter's pediatrician believes she has a type of post-infectious encephalitis. The difference that he sees is that her immune system, is not dealing appropriately with infectious agents, so that she has maintained a chronic, low level (compared to say meningitis) encephalitic state most of her life. He says we cannot possibly keep her strep free, MP free, pathogen free, because these germs are everywhere in the environment, on our skin, respiratory system, etc. So he sees correcting the immune function as the key to helping my daughter with this issue. Somehow, when you don't diddle with the question of is it PANDAS or not...but just try to define what is happening in the individual case and what treatment is likely to help- it just makes more sense to me that way.

[nevergiveup]

I completely agree! These are the best docs

 

Peglem, Its called "stacking the deck". Hey Singer stacked his deck to make it look like pandas dont exist. (Hopkins). Swedo has to make sure she's got the kids with autoantibodies to prove this disease is helped from immunomodulators. If she has the wrong kids in her study, no one will ever prove ivig helps. Just my opinion. All docs "stack the deck" in their selection criteria, they want non biased results.

 

From the link above:

Although there is at least one well done study that supports the use of intravenous immunoglobulin for well-defined Pandas cases, this work needs to be replicated. Plans are now under way for such a replication study in a carefully defined group of children who meet the narrower criteria described above; the study will again be performed at the National Institutes of Health’s Clinical Center in Bethesda, Md., by Dr. Susan Swedo, who first coined the term Pandas more than a decade ago.

Does anybody know more about this replication study?

 

My reaction is pooh, who needs it? It's just going to be an excuse to narrow the focus of the kids when most of us know there is no such thing as "carefully defined... narrower criteria" It's gonna try to make us all into crazy parents.

Just sayin'.

I understand- you have to choose subjects that you are certain about- to reduce variables. Its the reason my child will never qualify for studies, she just has too many variables. But, in practical application of what is learned from studies, doctors need to be able to interpret not just the objective testing and data, but consider how it applies in individual cases. Otherwise, the only people who will benefit from what is learned from the studies, is those who would qualify for the study in the 1st place, and that is denying care and treatment to a large population of people who need that help.

 

My daughter's pediatrician believes she has a type of post-infectious encephalitis. The difference that he sees is that her immune system, is not dealing appropriately with infectious agents, so that she has maintained a chronic, low level (compared to say meningitis) encephalitic state most of her life. He says we cannot possibly keep her strep free, MP free, pathogen free, because these germs are everywhere in the environment, on our skin, respiratory system, etc. So he sees correcting the immune function as the key to helping my daughter with this issue. Somehow, when you don't diddle with the question of is it PANDAS or not...but just try to define what is happening in the individual case and what treatment is likely to help- it just makes more sense to me that way.

[nevergiveup]

Absolutely the good guy, I agree.

Personally, I didn't find the article to be too concerning. And I did want to share this.

 

Have spoken with Diana P a number of times about Dr. Leckman. She raves about him: says he is just a wonderful, empathetic man who truly grasps the tragedy of this disorder and is beside himself about the plight of PANDAS children who are denied critical treatments.

 

When my son was in the grips of his "exorcist exacerbation" in Summer 2008, my wife and I were terrified and lost. Diana P gave me Dr. Leckman's contact info and recommended that I contact him. He responded quickly to my e-mail and suggested a phone call: no "phone consult," just him offering his time in the interest of helping a sick child. He was a super nice, compassionate person on the phone. I traded e-mails with him periodically after that, and he called me again last summer when we were again in the grips of the "PANDAS demon" and losing hope.

 

From speaking with him twice on the phone, I can reassure you: he gets it. He believes in PANDAS (maybe mostly the extreme variety, but he does not doubt its existence). He is working very hard - with Diana P, with Dr.'s Swedo and Grant at NIMH, with Dr. K and Dr. Cunningham - to try to compile incontrovertible proof for the skeptics and to get IVIG for needy kids.

 

Sometimes I think the good guy docs have to soften their message to avoid getting dismissed out of hand by colleagues who remain unconvinced. But Dr. Leckman is definitely one of the good guys!

[reactive]

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....

[ajcire]

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....

[MomWithOCDSon]

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.

 

We're in an identical place, ajcire. When a child is entirely asymptomatic physically, as was your son, mine and Sammy Maloney, then who's to know when that "onset" began?! At first I thought that our DS13's "original onset" must've been at age 6, when he was first diagnosed with OCD. But then I hear and read about strep and chronic ear infections, and since DS had one ear infection after the other from about 18 months until age 3, when he had tubes inserted in his ear drums, his "onset" could have been MUCH earlier! But how to separate his displays of separation anxiety and rages at that age from what is standard for the age group?!?!

 

I really rebel against this "sudden onset" criteria for obvious personal reasons. We discovered PANDAS at age 12, despite a pre-existing 6-year-old OCD diagnosis. If our pediatrician had insisted on a "sudden onset" criteria, she would have refused to treat DS, and if that becomes part of the established criteria, she would have had good reason. But here's the thing: the abx WORKED and continues to work! So it IS PANDAS . . . at least in part, if not in whole . . . and to have excluded my DS or yours on anyone else's without at least TRYING the treatment is heartless lunacy!