Dr. K's presentation at OCF Conference

[mama2alex]

I just received an email stating that, in his presentation at the OCF Conference, Dr. K said "antibiotics do not work for PANDAS, and that the only solution is IVIG." This doesn't match my experience with him, and I'm wondering if he really said this, or is this just gossip? He has never advised us to stop antibiotics, and even had us do a trial of a different antibiotic for a few weeks, so I was shocked to read this. If anyone was there, can you clear this up?

[NMom]

I just received an email stating that, in his presentation at the OCF Conference, Dr. K said "antibiotics do not work for PANDAS, and that the only solution is IVIG." This doesn't match my experience with him, and I'm wondering if he really said this, or is this just gossip? He has never advised us to stop antibiotics, and even had us do a trial of a different antibiotic for a few weeks, so I was shocked to read this. If anyone was there, can you clear this up?

 

 

I attended his presenation and he absolutely did say that. He said he'd only seen one patient that responded long-term to antibiotics and that, in his experience, ALL patients become non-responders to antibiotics.

[P_Mom]

ARGH! See what I mean!!! He did indeed advise us to stop antibiotics COMPLETELY!! I did not listen to that! That is when I went to seek other medical help. (still thankful for him...just have to put that out there...atleast he helps and believes!!!)

[Johnsmom]

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

[smartyjones]

who the H*** is "whizzing along"?!

I do care about Singer -- we were referred to him a year ago! They need to be on the bandwagon, not dragging it down like they now are. only due in a large part to this forum was i able to discern what to do. what if i had gone to him as one of the leading experts in the field and had actually BELIEVED him and followed his advice and been referred back to our psychologist only??? for at least 6 months after and still to a lesser degree, i've felt the extensive reach of the long arm of the esteemed JHU in influencing drs. in my area.

 

I was personally struck by the compassion and caring of the dr's that spoke. yes, each has their idea of what's right and it's frustrating that they don't agree. but i felt they think - holy sh**, what's happening here and we've got to get a handle on it.

 

i went to hear dr k and his experience. and that's what i got -- his experience. i like that he speaks with confident authority. i don't have to take his word as the final truth but i wanted to hear what he has found with how he treats.

 

i was especially struck by Dr. Leckman. he seemed to me almost ego-less and taking our stories personally and doing what's in his power to try to figure out what the h*** to do. beginning with having the experts reach some sort of consensus or at least, meet and discuss what they're finding and what they may have in common!

Edited July 20, 2010 by smartyjones

[dut]

I had the pleasure of talking to Dr Leckman when we first learnt of PANDAS a couple of years ago. I rang his office having seen him mentioned on the internet and he was kind enough to spend well over an hour on the phone with me just discussing PANDAS. He was very humble, gracious and generous with his (unbilled) time and truly seemed to care. I really, really liked him.....

[T_Mom]

I was struck that all who were speaking at the conference CARED!

 

It was a blessing to hear the speakers through out the day--and it was also sobering to think that so many children are as yet without hope of treatment--

 

The tide is changing--thanks to many who have given time, energy, and concern to make it so.

 

Just think where we were two years ago...huge steps folks, huge.

Edited July 20, 2010 by T.Mom

[peglem]

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

[JAG10]

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

 

I PM'd it to you.

[dut]

peglem - yes it was .. here's the bit re the conference

 

"Our panel presentation went beautifully. Dr. Nicolaides was truly moved to see the way my book has affected so many families. I was able to pop into most of the other presentations. It was disappointing to hear Dr. Kovasevic forcefully assert that antibiotics do not work for PANDAS, and that the only solution is IV Ig. As we all know from Sammys experience that is simply not true. And the limited efficacy of IV Ig as a treatment has been repeatedly confirmed via parent emails.

 

The problem is not the failure of antibiotics, but the failure of physicians to prescribe them appropriately long-term and in sufficient dosages.

 

 

A top-secret medical conference about PANDAS wrapped up at NIH today. Its one of the worst kept top-secrets ever. It was mentioned in every single presentation at the OC Conference and has been talked about for months. Ive never understood why all the attempted secrecy, and no one seemed to be able to articulate the goal. Perhaps there will be a consensus that PANDAS exists. I guess it would be nice if the Non-believers finally caught up with the rest of us. But personally I could not care less whether Harvey Singer or Roger Kurlan (page 201) are ever on board. The train left the station quite some time ago, and we seem to be whizzing along just fine without them."

Edited July 20, 2010 by dut

[EAMom]

Peg, you really need to get on her mailing list! ha ha ha

 

Actually, I ignore most of her "e-mail blasts" but for some reason, happened to read that one.

[kimballot]

who the H*** is "whizzing along"?!

 

I do care about Singer -- we were referred to him a year ago! They need to be on the bandwagon, not dragging it down like they now are. only due in a large part to this forum was i able to discern what to do. what if i had gone to him as one of the leading experts in the field and had actually BELIEVED him and followed his advice and been referred back to our psychologist only??? for at least 6 months after and still to a lesser degree, i've felt the extensive reach of the long arm of the esteemed JHU in influencing drs. in my area.

 

I was personally struck by the compassion and caring of the dr's that spoke. yes, each has their idea of what's right and it's frustrating that they don't agree. but i felt they think - holy sh**, what's happening here and we've got to get a handle on it.

 

i went to hear dr k and his experience. and that's what i got -- his experience. i like that he speaks with confident authority. i don't have to take his word as the final truth but i wanted to hear what he has found with how he treats.

 

i was especially struck by Leckman. he seemed to me almost ego-less and taking our stories personally and doing what's in his power to try to figure out what the h*** to do. beginning with having the experts reach some sort of consensus.

 

thanks, Smarty - I was not able to go to the conference, but it is good to hear your perspective. I know that Dr. K has lots of experience and it is good that he is presenting and sharing it. You are right - it is just that - his opinion... but that is where we start. It is the lowest level of evidence, but it is a starting point from which research studies can be generated. In all likelihood, there will be some parts of his information that will be disproven and some that will stand the test of time. ... and Yes.. it is frustrating that the doctors don't agree... but if they communicate and collaborate then the best procedures can be developed.... and those procedures can be tested... and in a few years we will have recognizable names for all the PANDAS subtypes and we will have standard protocols to treat each type. We need all the doctors to talk about what they have found successful and we need Leckman - and more of him - to test this stuff out and make it evidence-based, so we can get insurance coverage.

 

In the meantime, though, we still have to live with JHU influencing doctors in your area.... and CHOP influencing doctors in philly, and all the other children's hospitals spitting out the NIMH website info to every child who walks through the door. It is difficult (for me) to forget the condescending tone in my local neurologists voice 6 months ago when he said "Mrs. **... we've been through this before... your child has a tic disorder. He does not have PANDAS. The "s" in PANDAS stands for strep and your child did not have a strep throat. Even if he did, we do not treat it any differently than any other tic disorder. You can go back to the psychologist for more CBT, go back to the school to ask for more accommodations, and I would be happy to start him on an SSRI if you would like.. now I cannot and will not do the blood work that was recommended to you from that PANDAS website". UGH! The kid had an infected cyst in his sinus and it was pressing on his eyeball and we had to drive 7 hours to Dr. B to figure it out for goodness sake!... but that local neurologist can be very proud that he stuck to the guidelines!

 

Ok... sorry for the emotional digression.... My point is that we all need to stick together and support all of our docs as they grapple with this and try to figure out the best solutions for our kids. I am sure that the best solution for my kid is not the same as the best solution for other kids...Our kids have different underlying problems... some have strep, some have staph, some have viruses, some have mycoplasma, some have lyme... so the treatment will vary.. for some it is antibiotics... for some antivirals... for some IVIG... but we really need to encourage communication among the docs to find the best solution for all kids.

 

I hope that this conference was the start of commuication and not the end. Does anyone know if there are plans for more conferences where the docs can come together? That is what we need to develop evidence to counteract singer and kurlan.

[JAG10]

You go, sista!

Great post!!!

 

I'm for anything that gets the best results for that kid, period!

 

I tried to use the little vote up link in the bottom right, but I couldn't get it to work.

Edited July 20, 2010 by JAG10

[peglem]

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized.

 

Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

[Johnsmom]

you crack me up Peglem. I see Jag10 PM'd you the message from the "PANDAS MESSIAH"

 

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?