Conference at Brown University

[Sonshine]

Can anyone who was at the conference share what they learned? In the past, there have been videos released to the public, but I understand the speakers declined to be taped.

Someone on the forum mentioned there was new information regarding immune abnormalities.

 

Always curious about the latest research.

 

 

[T_Anna]

Also curious as Dr.Harley was there I believe and I'm curious about his T&A study.

 

Anyone?

 

T.Anna

[melmix]

I was there - at the parent portion - I got the impression a lot more technical information was discussed during the prior day with

health professionals. It was very different from the other conference I attended in Norwalk - for example Dr Swedo claimed there

was no reason for multiple IVIG treatments and another doctor stated in his opinion there is no affect on changing diet (ie gluten

or casein). Any other specific questions I would be happy to answer.

Melmix

DS 8 PANDAS/PANS/Lyme

[MaryAW]

I was at the medical day. I took some notes, but not a lot because they said that the slides would be available online. I have not been able to find them. I can send an email to find out and post a link if one exists. I focused mainly on what pertained to my own child's needs with my notes, but here is what I have:

 

Dr. Swedo in her presentation, did not seem to offer anything dramatically different than what she has said before. She said that striatal encephalitis was a medically accurate description of PANDAS and might get covered by insurance more easily. She said 440 was normal strep titers for a school aged child. She was all about PANDAS, did not use the term PANS often. I asked about this, and her response was that all of the research that had been done in the past was about PANDAS. For me personally, this is frustrating because they knew about other triggers way back when - hence PITAND. But I do love Dr. Swedo and her devotion to our children. She answered a question I had in private conversation. She said that a child should stay on abx for one year after being symptom free. For my DD, who has an immune deficiency and relatives on both sides with rheumatic fever, she said it might be wise to keep her on for very long, if not indefinitely.

 

Dr. Williams from Yale, and now Mass. General, spoke of higher rates of immune deficiency in PANS children, making them predisposed to autoimmune disorders. He said IGA levels go up nominally as children get older; however, in children with OCD, they do not.

 

Dr. Frankovich from Stanford spoke of immune problems - genetic history of autoimmune diseases and immune deficiencies in PANS childrens' families.

She also spoke about giving ibuprofen (or Naproxen) 2-4 X a day. Wean off and then if they are doing well, you can remove the it from the regimen. She expressed a need for more clinics like the one at Stanford.

 

Dr. Xiang spoke of sleep disturbances - night terrors, nightmares, not wanting to sleep alone, restless sleep, REM being disturbed.

 

Dr. Cooperstock spoke about antibiotics, but it seemed like he was not on the same page as most PANS doctors. He uses abx strictly for prevention of strep, whereas most docs seem to feel there is an immune modulating effect as well. I found his presentation did not offer anything new.

 

Someone asked the panel if allergies can cause OCD, and they all responded - yes. Quite a few parents asked very specific questions about their own children.

 

Even though neither Dr. Swedo or Dr. Williams would directly comment on the results of the IVIG study (coming VERY soon - they said), it seemed like it was extremely positive.

 

I'll crunch my brain and try to remember more.

[EAMom]

Which doc said there is no effect by going GF? Dr. Frankovich just convinced dd to go gluten free. She said it may help decrease inflammation that is causing our baseline pandas symptoms.

 

Also, if allergies can cause a flare, it's logical to think gluten sensitivity could as well.

Edited April 13, 2015 by eamom

[smartyjones]

thanks maryaw for the run-down!

 

maybe you can give me your insight -- am I right in assuming your questions were regarding long-term prophylactic abx?

 

what if a kid has been in long-term remission and then gets an exacerbation? is that exacerbation treated like the initial in terms of assessing use of prophylactic abx -- I mean, on abx for at least a year symptom free?

 

is prophylactic discussed mainly in terms of strep for PANDAS vs. all infections of PITAND?

 

here's my trouble with long-term abx -- in addition to the usual -- we had known infections of lyme, strep and myco since Sept. each was treated as acute and he is back at baseline. obviously, watching, charting, blah, blah, blah. he is not on prophylactic abx.

 

for one - he has allergy to penicillin. but - if we think we are prophylactic for strep -- that wouldn't have avoided the other two. when I weigh everything, I'm not sure it makes sense. am I looking that it would have been 2 instead of 3 and that's a little better vs. avoiding all?

[MaryAW]

FYI - my DD is PANS. I can't say for sure what was behind Dr. Swedo's comments. I know she is very concerned about strep prevention. However, Dr. Murphy, whom I respect deeply, says that abx have an immune modulating effect (calms it down). So, I'm not sure if it's strictly strep prevention or the effect on the entire immune system that she was concerned about. I know that if my DD goes without her azithromycin for more than 3-4 days her tic comes back. when we put her on the abx it goes away quickly.

 

My non-professional opinion would be to monitor your child. If he stays at baseline then I wouldn't do the abx. If it looks like he is starting to revert back, I would think long term abx until one year symptom free would be wise.

[mommybee]

I attended on Saturday and distinctly remember being told that there was no need to take notes because the presentations would be taped. I don't, however, remember hearing that the presentations would be put on the web. I wonder whether the intention was to provide those in the healthcare field with some kind of password protected link.

My impression was that Dr. Cooperstock was on the same page as the others. The only distinction is that he is a practitioner and all the others, even those who treat patients, are involved in scholarly research. I also distinctly recall his reference to PANS. He even went so far as to share that he prescribes Theraflu preventatively when household members of his patients get the flu.

I also recall Dr. Murphy specifically saying that we really don't know why antibiotics have therapeutic value even when strep is not involved. While she suggested that the drugs may have immune modulating properties, she also mentioned that some classes of antibiotics have anti-inflammatory properties as well.

Dr. Swedo focused on the new streamlined diagnostic criteria of PANDAS and PANS. I remember her suggesting that children remain on antibiotics for a year post-infection, but she wasn't clear about dosing levels. My suspicion based on several personal conversations with over the years is that she was referring to prophylaxis. She definitely advises doctors to use the narrowest spectrum antibiotic possible and to drop the dose to a prophylactic level as soon as symptoms abate.

 

I thought the presentations were informative and was not at all bothered by the questions parents asked during the Q&A portion. There appeared to be a fair amount of parents there who were also healthcare professionals. I sat between a nurse and a physician who were both mothers of children whose children were in remission.

I was also pleased that the Saturday portion of the conference, at least, was considerably less contentious the one I attended in Rhode Island a couple of years ago. I was not alone in this view.

 

If folks have specific questions about the presentations, let me know and I'll do my best to answer them.

Edited April 27, 2015 by mommybee