dr. kovacevic on PBS either today or tomorrow?

[thereishope]

I find it interesting that if a doctor is from Chicago, they assume they have an edge on people. I have had bad experiences at the Children's Hospital and at Northwestern Memorial. Granted, it was years ago, but you learn just because a doctor practices at a big hospital, it doesn't really mean much.

 

Now Dr K is from the Chicago area. So that explains why he is okay:)

[EAMom]

I think you are right on WD.

 

I also think there are many uniformed peds/docs that are simply to lazy to research PANDAS and decide for themselves if it is "real or not"...they rely on Wikipedia and opinions from people like Shulman/Kurlan/Singer (they are so highly respected, so they must be right! ) And when research like Kurlan/Kaplan's June 2008 Pediatrics http://www.latitudes.org/forums/index.php?...art=#entry26571 article comes out, they skim the title and the summary and say "look, here is proof that PANDAS doesn't exist" (that's what our ped said!). If they had actually taken the time to carefully READ the whole article, they would have realized that Kaplan/Kurlan's research most certainly did NOT "prove" that PANDAS does not exist!

[MomWithOCDSon]

Synchronicity. I got an email today from my son's school psychologist, with links to this WBEZ story. She said she had just heard it on the air and thought I might be interested in it. (I spent about 2 hours on the phone with her last week, downloading our entire PANDAS story to her, and followed up with some web links, articles, etc. so that she could get more familiar.)

 

Anyway, I found myself standing on a gianormous soapbox, regaling her with more Tales from the Forum and recounting my own DS's progress (which she has witnessed herself inside the school setting), just to make sure she wasn't going to be inclined to give Shulman any due. It's exhausting, putting out these little "nay-sayer" brush fires that keep springing up! Like we have time and energy for THAT, for cryin' out loud!

[Johnsmom]

wOW! I am a newbie and your story is great. I am sorry for what you and your son had to go through. You give me a lot of hope for our son. We have our 1st appt with DR K on March 31st. I am having a hard time focusing on daily life now. My son was diagnoses PDD-NOS at age 5. I have 6 titer tests since then that are all elevated. He has OCD, intrusive thougts and tics that come and go. I look back though when he was a baby and wonder if he had it then. He began to slam his legs in to the crib in his sleep when he was 6 months old. It lasted three weeks. He then obsessed about touching my hair. Many other weird things too but he is my only child and was never really sick that I knew of. He did have pink eye when he was 1. hes sick all the time now. right now he has a cold and is acting unbelievably well. The calm b-4 the storm maybe.My story has a lot more too it of course. If I could only relax until the 31st! I am so glad I found this forum.

 

 

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.

[Kinsella]

He's from Infectious Diseases? From what I understand, they can be some of the worst in saying PANDAS doesn't exist.