Pandas docs

[dcmom]

Okay, I am frustrated.

 

So, would there be any way to get a few docs in a room together? I am thinking: Dr Latimer, Dr Triffileti, Dr B (from CT), and Dr Nicolaides- possibly Dr K, together at a meeting in NY? I mean all have lots of clinical experience, but somewhat different paths. If we could get them together to have a few hour conversation....

 

Maybe even a conference call? Does anyone have any ideas or experience with this type of thing?

[lss]

I believe there will be such a meeting of doctors to come in March some time. Not sure that it includes Dr. B though and or Nicolaides, but will include Leckman. All this info thru Diana P.

 

Linda

[KeithandElizabeth]

Eileen:

 

I think about this all of the time!!! If I were a doctor, I would be calling all of the other doctors treating the same illness all of the time to discuss treatments, etc.....

 

But, after watching several people I know fight breast cancer and get so many different opinions on treatment options, I wonder if this is just the nature of medicine.

 

It is frustrating from the perspective of the parent though!!!!!

 

Elizabeth

[coco]

Yes, maybe in March. I spoke to Diana also and I believe she will try to get Dr. B added to the invitee list, since Dr. Leckman refers him and they speak about patients regularly. The more doctors who believe and treat the better for all our kids! I am excited about them all getting together. Don't you wish we could be flies on the wall?!

[sf_mom]

Tentatively planned for January: Dr. K, Leckman, Singer..... sorry, I can't remember the rest. I thought Swedo, Cunningham, Latimer were all mentioned but I don't want to spread any rumors. I know they are talking... Dr. K called Cunningham while we were there.

 

-Wendy

[peglem]

Well, if they weren't all so busy treating our kids, we could get them a big bus and they could go on tour- hitting every major children's hospital in the country, starting with the west coast (for a change!).....The PANDAS mobile! hey how about a PANDAS treatment center on wheels? How cool would that be? Sorry....my fantasies running away with me!

[Iowadawn]

Tentatively planned for January: Dr. K, Leckman, Singer..... sorry, I can't remember the rest. I thought Swedo, Cunningham, Latimer were all mentioned but I don't want to spread any rumors. I know they are talking... Dr. K called Cunningham while we were there.

 

-Wendy

 

I think I remember Dr. K telling us of the six coming to this summit, as he called it, 2 were always PANDAS proponents, and 4 are converted opponents. Dr. K can be "interesting" to listen to, but in this conversation he was mentioning a doc from Mayo, J Hopkins, and another eastern doc that were all naysayers until they had personal experience and sent their patients to him!! I know Dr. C (at least a month ago) was not included, because I asked her. Now, that may all change. She said she didn't want to rain on their parade and toot her own horn by "inviting" herself.

 

But, I agree, in this day and age when nobody has to even travel, can everyone in the know discuss what is going on in his PANDAS world.

 

Dawn

[coco]

Dawn, do you know what city they are meeting in?

[matis_mom]

Wouldn't it be wonderful if they could do a telecast or something and all our pediatricians/immunologists/rheumathologists/etc (and, dare I say, confused husbands/relatives) could listen and see the light, and then everyone would be on the same page? My fantasies running away with me too... and while we are dreaming, they could publish something so that insurance would take that CamK number and cover all the IVIGs and PEXs we might ever need!

[sf_mom]

OK... think Cunningham has been invited.

[Suzan]

Wouldn't it be wonderful if they could do a telecast or something and all our pediatricians/immunologists/rheumathologists/etc (and, dare I say, confused husbands/relatives) could listen and see the light, and then everyone would be on the same page? My fantasies running away with me too... and while we are dreaming, they could publish something so that insurance would take that CamK number and cover all the IVIGs and PEXs we might ever need!

 

I bet my local immunologist and Dan! doc would be interested in listening in.

 

Susan

[thereishope]

This is great! I hope someone is there to take photos or a news outlet is invited. Ths needs to be documented for textbooks. Isn't it amazing that we are seeing history in the making?