NIH and DR. T coming to Leroy

[EAMom]

I imagine new patients will be somewhat reluctant to rush into a practice that misdiagnosed so many kids and seems in a rush to misdiagnose the few they missed.

 

 

It is especially bad that they misdiagnosed with such an absurd diagnosis AND on national TV.

Edited January 24, 2012 by EAMom

[EAMom]

What do you think will happen when they figure out this really wasn't mass hysteria after all?

I think the doctors will develop "mass hysteria!". Lol! Couldn't resist that!!!

 

He he he, I would call that Karma.

[peglem]

What do you think will happen when they figure out this really wasn't mass hysteria after all?

I'm ashamed (a little) to say that I hope the "conversion disorder/mass hysteria" dx-ers are publicly humiliated.

[beeskneesmommy]

Go, go, go Dr. T! What a modern day hero!

[airial95]

Unfortunately, what will probably happen is there will likely be little or no follow up by the national media when the truth comes out. It will be a buried story in the local papers and TV because no one will want to embarrass the U of R's reputation, and they were the first to present to the parents etc...at the public meetings

[wornoutmom]

I rarely post here anymore, but still read the forum faithfully. I just wanted to say that you guys are my heroes for being so proactive in contacting Dr T, contacting these parents, contacting the media etc. If these kids are PANS, are treated and improve, it may be the tipping point that this disorder needs to finally finally gain mainstream acceptance. Think of all the future kids who might be properly diagnosed and TREATED. My ds16 has been diagnosed since 2002, when there was barely any knowledge, treatment or support. We spent many years alone with this... It is amazing to me to see this network of parents and all that they have done in the past few years and now to see widespread national media coverage. It is amazing to be able to say my son has PANS and people know what I am talking about. It is SO empowering for my ds to be able to see all this, and know he is not alone. You guys are MY heroes!!

[JAG10]

Please don't take this as selfish as it will sound, but is anyone else worried that "acceptance by mainstream medicine and insurance" will have its own price to pay for our kids? Like if NIMH keeps publishing long-term abx are not warranted, but says the opposite face to face, insurance could make a stand against it. I guess what I'm saying is that "we" as a group are benefiting to a certain degree by flying under the radar. Mainstream acceptance could result in more rigidity in what is covered.

[thenmama]

Well, I don't think Insurance would put up a fuss about LT abx-- they're cheap. Any backlash against LT abx is more likely to come from the medical community b/c of abx resistance/fear of overprescribing abx. Insurance will want to exclude IVIG and PEX and anything else that's $$$. Just my thinking, anyway...

 

TH

[dcmom]

JAG-

 

I have had lots of "selfish" thoughts over the years. The latest one being, in this past year Dr T has been amazingly helpful for my kids. What happens if/when he cracks this Leroy thing? Will I ever get in to see him again? And yes, if general medicine/insurance/NIH get this accepted into the mainstream med community and media- what will they say works? I don't really think my kids have needed long term abx, though we did do them, but we DO need periodic immune modulating therapy (steroids, iv steroids, pex).

 

Sigh- I do feel it will be a long road even if PANS/ PANDAS becomes more mainstream.....

 

BUT- the more generous side of me is very hopeful that these kids get well, and that Dr T finds overwhelming success and support! (Ya know- it is MY job to be a mama bear to my kids).

[thenmama]

I think there's also the possibility that the Dent docs are dx'ing based on their own relationships with big pharma.

 

Conversion Disorder = rx for psych meds-- apparently some kids are on up to 8 or 9. PANS/SC = abx (poss IVIG but that's not going to be big bucks on the pharma end)...

 

So, I dug-- not far!-- and found this:

 

Laszlo Mechtler, MD, Associate Professor, Chief of Department of Neuro-oncology, Roswell Park Cancer Institute, Buffalo, New York; Clinical Associate Professor of Neurology, School of Biomedical Sciences, State University of New York at Buffalo, Buffalo, New York; Vice President, Director, Brain Tumor Center, Director, Headache Clinic, Dent Neurologic Institute, Amherst, New York

Relationship Disclosure: Dr. Mechtler has received personal compensation for speaking engagements from Forest Laboratories, Inc., GlaxoSmithKline, Merck & Co., Inc., and Zogenix, Inc.

 

and it seems Dr M was one of 384 doctors who earned over $100,000 in payments from big pharma (the tally compiled disclosed payments to docs made by 8 big pharma companies and only two of the four pharm companies that have paid Dr M as mentioned in the bio/rel disclosure from another site I quoted above were included in this sum of his earnings)...

 

See this where he earned 116 k: Dr M's Pharma Cash

 

Tallying in some of the more recent payments noted here, I get the total at $175,853 (and this is only what's been publicly disclosed and still doesn't include all of the companies that are known to have compensated him.

 

Would be really interesting to know how many of the Le Roy kids are on drugs made by GlaxoSmithKline: which has paid him at least $167,000 since late '09.

 

Also, this is something PANS is likely up against in some medical areas, as well, and could be the root of some resistance to it.

 

Anyway, just another angle coming from cynical me over here...

 

TH

[HT's Mom]

Well, I for one and jumping out of my skin with excitement over the possibility of Dr T getting up there and these kids being diagnosed with PANS/PANDAS.

 

I hear your concerns about insurance, media suppression, etc, and I completely agree with the conspiracy theorists about why the medical community, insurance companies, pharmaceuticals, etc would continue to dismiss the diagnosis and its treatments. My dh is a medical malpractice attorney, and any one of his cases would make you a believer in that stuff. (DH keeps threatening to bring class action on behalf of all pandas patients!! Anthem just sent us a letter saying no more IVIG's, after approving the first two.) And the doctors are definitely in with the pharmas - good hunting, thenmama!

 

But we parents have been waiting so long for this type of story and case, where it can't be dismissed as just another story about just one weird kid. Each time one patient is profiled, Sammy, Lauren Johnson, the many other articles around the country about individual Pandas cases, there is never, that I've seen, a connection made in the story to the other cases, The Today show people don't even connect them when interviewing the individual families. So if 13 or 16 kids are diagnosed at once, WOW! This can only help with diagnosis and treatment of future kids. And selfishly, we moms won't sound so crazy to our peds, families, teachers, etc. It is still a long road ahead for proper treatment prescription and coverage, but it would be a great start.

Edited January 24, 2012 by HT's Mom

[HT's Mom]

[oops, accidental repost)

Edited January 24, 2012 by HT's Mom

[coco]

JAG - I agree. My initial reaction, too, is wow! Dr T can help, more awareness, more publicity, more knowledge! Then that lonely feeling of can I get him if I need him for my child becomes scary. I remember that 3 years ago my daughter was only the third child treated by Dr B, and his first girl. I remember begging him to contact Dr.Cunningham and Dr K, him jotting down notes in front of me as fast as I could tell him..."C, can you spell 'Miroslav Kovasevic' for me?'" Another mom and I from here pestering the life out of him to call Swedo to learn more about hd ivig. It's all sort of a blur when I see his new infusion center now with kids stacked up like cordwood. And, yes, I now must wait 7 weeks for a check-up appointment. But I am in fine company. There is a price

for giving so freely, but I believe we all become stronger.

[JAG10]

Well, I for one and jumping out of my skin with excitement over the possibility of Dr T getting up there and these kids being diagnosed with PANS/PANDAS.

 

I hear your concerns about insurance, media suppression, etc, and I completely agree with the conspiracy theorists about why the medical community, insurance companies, pharmaceuticals, etc would continue to dismiss the diagnosis and its treatments. My dh is a medical malpractice attorney, and any one of his cases would make you a believer in that stuff. (DH keeps threatening to bring class action on behalf of all pandas patients!! Anthem just sent us a letter saying no more IVIG's, after approving the first two.) And the doctors are definitely in with the pharmas - good hunting, thenmama!

 

But we parents have been waiting so long for this type of story and case, where it can't be dismissed as just another story about just one weird kid. Each time one patient is profiled, Sammy, Lauren Johnson, the many other articles around the country about individual Pandas cases, there is never, that I've seen, a connection made in the story to the other cases, The Today show people don't even connect them when interviewing the individual families. So if 13 or 16 kids are diagnosed at once, WOW! This can only help with diagnosis and treatment of future kids. And selfishly, we moms won't sound so crazy to our peds, families, teachers, etc. It is still a long road ahead for proper treatment prescription and coverage, but it would be a great start.

 

Okay, but isn't there likely to be some (perhaps additional) reason why this has happened to 16 kids in one school and that has not happened in any of our children's schools within a specific time frame like Le Roy? Perhaps an environmental factor, perhaps a wicked combination of Strep AND Myco-p? Certainly disregarding "mass hysteria" as a diagnosis for such a public story is advantageous for all. I'm just not sure about what is on the other side of this "tipping point" and it makes me a little anxious.

[HT's Mom]

Well, I for one and jumping out of my skin with excitement over the possibility of Dr T getting up there and these kids being diagnosed with PANS/PANDAS.

 

I hear your concerns about insurance, media suppression, etc, and I completely agree with the conspiracy theorists about why the medical community, insurance companies, pharmaceuticals, etc would continue to dismiss the diagnosis and its treatments. My dh is a medical malpractice attorney, and any one of his cases would make you a believer in that stuff. (DH keeps threatening to bring class action on behalf of all pandas patients!! Anthem just sent us a letter saying no more IVIG's, after approving the first two.) And the doctors are definitely in with the pharmas - good hunting, thenmama!

 

But we parents have been waiting so long for this type of story and case, where it can't be dismissed as just another story about just one weird kid. Each time one patient is profiled, Sammy, Lauren Johnson, the many other articles around the country about individual Pandas cases, there is never, that I've seen, a connection made in the story to the other cases, The Today show people don't even connect them when interviewing the individual families. So if 13 or 16 kids are diagnosed at once, WOW! This can only help with diagnosis and treatment of future kids. And selfishly, we moms won't sound so crazy to our peds, families, teachers, etc. It is still a long road ahead for proper treatment prescription and coverage, but it would be a great start.

 

Okay, but isn't there likely to be some (perhaps additional) reason why this has happened to 16 kids in one school and that has not happened in any of our children's schools within a specific time frame like Le Roy? Perhaps an environmental factor, perhaps a wicked combination of Strep AND Myco-p? Certainly disregarding "mass hysteria" as a diagnosis for such a public story is advantageous for all. I'm just not sure about what is on the other side of this "tipping point" and it makes me a little anxious.

 

Yes, I'm probably naively optimistic. Yes, so many kids at one time, one place, same age, no history that we know of. It doesn't sound like it could be a "simple" PANS/PANDAS situation. But if it is, or some combination, as you say, that brings attention to this thing, great.