dr. kovacevic on PBS either today or tomorrow?

[Santi]

I was informed by Dr. Kovacevic's office that he is being interviewed either today or tomorrow on PBS. Does anyone have the specifics as to what time? I will try to find the info. Andrea

[thereishope]

Would it be live? I don't think PBS does live. I would think he's recording it tomorrow and I am assumming a turn around would be at least a couple months. Don't know anything about it.

 

I was informed by another organization that PBS is doing some a short term series on rare diseases. I don't think PANDAS is part of it. But, who knows maybe it's sparked interest in other things.

[ajcire]

Is this the same thing that someone mentioned was going to have the other Dr? Dr. B?

 

 

 

Would it be live? I don't think PBS does live. I would think he's recording it tomorrow and I am assumming a turn around would be at least a couple months. Don't know anything about it.

 

I was informed by another organization that PBS is doing some a short term series on rare diseases. I don't think PANDAS is part of it. But, who knows maybe it's sparked interest in other things.

[Fixit]

Would it be live? I don't think PBS does live. I would think he's recording it tomorrow and I am assumming a turn around would be at least a couple months. Don't know anything about it.

 

I was informed by another organization that PBS is doing some a short term series on rare diseases. I don't think PANDAS is part of it. But, who knows maybe it's sparked interest in other things.

 

 

I've been trying to get ahold of him...he is out of the country this week!!

[Santi]

Would it be live? I don't think PBS does live. I would think he's recording it tomorrow and I am assumming a turn around would be at least a couple months. Don't know anything about it.

 

I was informed by another organization that PBS is doing some a short term series on rare diseases. I don't think PANDAS is part of it. But, who knows maybe it's sparked interest in other things.

 

 

I've been trying to get ahold of him...he is out of the country this week!!

 

His office told me about it but she said that the doctor did not give specifics just that its today or tomorrow.

[Megs_Mom]

http://www.wbez.org/Content.aspx?audioID=40500

[peglem]

http://www.wbez.org/Content.aspx?audioID=40500

Thanks!

[ajcire]

I don't know who Shulman is but the first ped I asked about this must because he used the exact same example of falling out of a tree to discourage me from looking into pandas.

 

 

 

I just read the transcript of the episode and it make me sick to my stomach. We all know that PANDAS is not rare. And the case they are describing is OCD manifesting as severe anorexia - so in this case, it is literally a life-and-death issue. This little boy is dying and conventional medicines are not helping. If this were your child, why would you care what (seriously flawed) studies show regarding associations of strep with symptoms.

 

Who is this Shulman guy? Here is a recent review he wrote

 

http://www.ncbi.nlm.nih.gov/pubmed/19242249

 

He seems to be a Group A strep and Kawasaki expert, but has written exactly two papers on PANDAS - both of which are review articles! Sorry, this is NOT an expert in PANDAS. To have him on the same forum as Susan Swedo is a joke and an insult and I think you should tell PBS! - it's public broadcasting after all.

 

Presumably tomorrow we will hear from Dr. K who, while perhaps without the academic prestige of Shulman, has seen and helped thousands of kids with PANDAS. I hope he will say how common and under-recognized this condition is.

 

I really think the "believer doctors" like Dr. K and myself need to start FLOODING the medical literature with the truth on this condition to counteract this nonsense.

 

Can you see how other triggers like Mycoplasma and flagellated organisms can produce symptoms without strep-titer positivity can lead researchers to incorrectly conclude that PANDAS does not exist? We have to get this story out there in the medical literature.

 

Dr. T

Dr. T

[PANDAS_Denmark]

The interview with Dr. K. : http://www.chicagopublicradio.org/Content.aspx?audioID=40521

[Megs_Mom]

Until we found experts, I heard that refrain over and over. It's rare, so she can't have it. Low titers, so she can't have it. No treatment, so no point in exploring. Maybe it's because you are controling. Maybe it's because you breast fed too long , maybe it's because she is so smart. Maybe it is GAD. I think it's panic disorder, but that is rare in kids so she can't have it and there is no treatment for kids that have it. She has not lost enough weight. She is not severe enought. We can't give her an antibiotic....

 

So that part of the story, I just skimmed over, because it was SO FAMILIAR! To me, that is 9 out of 10 doctors, no matter what the profession. I am just on the hunt for the 1 out of 10 (maybe 1 out of 100) who has courage and curiosity.

[MomWithOCDSon]

Who is this Shulman guy? Here is a recent review he wrote

 

Dr. Stanford Shulman is chief of the Infectious Diseases Division at Children's Memorial Hospital in Chicago and President of the Pediatric Infectious Diseases Society.

 

Who is Dr Shulman

 

He was one of the first referrals I was given locally when I wanted to explore PANDAS with my DS; fortunately/unfortunately, the guy is very busy, and his office did not return my call for over a week, by which point in time I had found another doctor willing to help us.

 

I will say, though, that he is very highly regarded around here and appears to have a significant background with respect to rheumatic fever and Kawasaki's.

[MomWithOCDSon]

The interview with Dr. K. : http://www.chicagopublicradio.org/Content.aspx?audioID=40521

 

Thanks!

 

Well, now I'm in the "lynch Shulman camp." Honestly, if these people don't have adequate familiarity with the disorder, why do they feel so dead-set on shutting it down for those of us who are benefitting from the research and exploration into, and treatment for, PANDAS?!?! Is this all ego?!

 

I've written WBEZ via the "Comments" option on the web page, and I hope many of you will do the same. If they hear a great roar in response to the story, perhaps they'll follow it further.

[Pandas_chicago]

Who is this Shulman guy? Here is a recent review he wrote

 

Dr. Stanford Shulman is chief of the Infectious Diseases Division at Children's Memorial Hospital in Chicago and President of the Pediatric Infectious Diseases Society.

 

Who is Dr Shulman

 

He was one of the first referrals I was given locally when I wanted to explore PANDAS with my DS; fortunately/unfortunately, the guy is very busy, and his office did not return my call for over a week, by which point in time I had found another doctor willing to help us.

 

I will say, though, that he is very highly regarded around here and appears to have a significant background with respect to rheumatic fever and Kawasaki's.

 

 

Seriously, some of you know me and have seen me on this site before - I had they WORST experience EVER at Childrens MEMORIAL in Chicago - count your blessings that you were not able to get into see Shulman and his team...when I took my son

per a referral by me ped - to rule on encephalitis - due to the rapid (24 hours after strep infection) brain disfunction - we were disputed for 8 straight hours on how PANDAS did not exist - not only that - my son had a raging fever - and they did not take one medical test - they didn't draw blood - do a cat scan or take his fever!!!!!! The hospital to too focused on the belief that Pandas did NOT exist....

 

Today - my son after being treated by Dr. K - is a happy , healthy , non symptomatic - 11 year old boy - class student council rep, captain of his football team and travel baseball and basketball!

 

1 year after my son was healthy - I made REPEATED attempts to contact Shulman with Medical - data - he did not bother to take the time to contact me back - my son is on record as the first PANDAS case Diagnosed during the onset of STREP...and he didn't bother to return my call - I pray that any other child that walks through those doors today at Childrens ....has a better chance of treatment...

 

Sorry - but Shulman and his team do not even deserve to be mentioned on this board

[MomWithOCDSon]

Seriously, some of you know me and have seen me on this site before - I had they WORST experience EVER at Childrens MEMORIAL in Chicago - count your blessings that you were not able to get into see Shulman and his team...when I took my son

per a referral by me ped - to rule on encephalitis - due to the rapid (24 hours after strep infection) brain disfunction - we were disputed for 8 straight hours on how PANDAS did not exist - not only that - my son had a raging fever - and they did not take one medical test - they didn't draw blood - do a cat scan or take his fever!!!!!! The hospital to too focused on the belief that Pandas did NOT exist....

 

Today - my son after being treated by Dr. K - is a happy , healthy , non symptomatic - 11 year old boy - class student council rep, captain of his football team and travel baseball and basketball!

 

1 year after my son was healthy - I made REPEATED attempts to contact Shulman with Medical - data - he did not bother to take the time to contact me back - my son is on record as the first PANDAS case Diagnosed during the onset of STREP...and he didn't bother to return my call - I pray that any other child that walks through those doors today at Childrens ....has a better chance of treatment...

 

Sorry - but Shulman and his team do not even deserve to be mentioned on this board

 

Wow! I guess some guardian angel(s) were watching out for me when Shulman was too busy to take my call!

 

I just do not understand the vehemence of these nay-sayers! What's in it for them?! Skepticism on some level I get, and I think it can be healthy. But I am really baffled by the vociferous negativity of these folks like Shulman who won't even meet the growing evidence with some level of professional curiosity. It's shocking, really, and says a lot about their character.

[Worried_Dad]

This is just an opinion - I could be way off - but I suspect pride is a significant factor for some of these "highly respected" naysayers. I think they very publicly discounted the PANDAS hypothesis in the early days, perhaps for valid "scientific skepticism" reasons, and now they are too embarrassed to admit that they were dead wrong. Seems like that's why some of them have started to hedge: "Well, more research is needed... there may be PAND, just not PANDAS... etc."

 

Also - again, just opinion - I think some of the "mainstream" MD's are uncomfortable with the paradigm shift the PANDAS hypothesis might herald. If the "infected with insanity" theory is correct, they might be on the hook to treat what have traditionally been considered mental illnesses, rather than just referring those patients to a psychiatrist. I imagine others here have experienced this: you've waited months to see a specialist (neurologist, infectious disease doc, immunologist), your PANDAS child is in the midst of an exacerbation, and that specialist's eyes pop wide open when they see the extreme psychiatric symptoms. It flusters them big-time, and they just want you out of their office as fast as possible.

 

In their defense, I think we all have a primal reaction to mental illness. It scares most of us on a deep, visceral level. I admit that I was probably like this before PANDAS struck my son, and now I have much more empathy for those who are afflicted with mental illness. The thing is, if you choose to go into medicine, you need to overcome this kind of gut reaction to provide adequate care for your patients!

 

We actually had several medical professionals in the early days, before our son was diagnosed, vehemently insist that our son's problem was "not medical." Huh?!? So mental illness is not a medical problem? Aren't psychiatrists MD's who prescribe medications? Doesn't my healthcare insurance plan pay for mental health treatments?

 

I think the mental illness stigma still exists in this country, even among healthcare professionals.

 

I'll stop ranting now. It's too early for a blood pressure rise, eh?

 

 

Seriously, some of you know me and have seen me on this site before - I had they WORST experience EVER at Childrens MEMORIAL in Chicago - count your blessings that you were not able to get into see Shulman and his team...when I took my son

per a referral by me ped - to rule on encephalitis - due to the rapid (24 hours after strep infection) brain disfunction - we were disputed for 8 straight hours on how PANDAS did not exist - not only that - my son had a raging fever - and they did not take one medical test - they didn't draw blood - do a cat scan or take his fever!!!!!! The hospital to too focused on the belief that Pandas did NOT exist....

 

Today - my son after being treated by Dr. K - is a happy , healthy , non symptomatic - 11 year old boy - class student council rep, captain of his football team and travel baseball and basketball!

 

1 year after my son was healthy - I made REPEATED attempts to contact Shulman with Medical - data - he did not bother to take the time to contact me back - my son is on record as the first PANDAS case Diagnosed during the onset of STREP...and he didn't bother to return my call - I pray that any other child that walks through those doors today at Childrens ....has a better chance of treatment...

 

Sorry - but Shulman and his team do not even deserve to be mentioned on this board

 

Wow! I guess some guardian angel(s) were watching out for me when Shulman was too busy to take my call!

 

I just do not understand the vehemence of these nay-sayers! What's in it for them?! Skepticism on some level I get, and I think it can be healthy. But I am really baffled by the vociferous negativity of these folks like Shulman who won't even meet the growing evidence with some level of professional curiosity. It's shocking, really, and says a lot about their character.