IOCDF asking for Parent Input

[LNN]

Posted with permission:

 

I've been asked to post this request for parent input. If you're attending the conference in Chicago, please attend this session. If you can't make the conference, please email Susan with your input. This session is to brainstorm ideas for researchers.

 

Research into the cause and effects of PANDAS and PANS is still in the infancy stages. Many parents have ideas about what is working for their children. As IOCDF works towards fundraising for research into PANDAS and PANS, we are interested in hearing thoughts from parents about what questions they feel are unanswered. These ideas may be used in future research funding, or may simply be suggested to researchers independently. This brainstorming session is organized and moderated by Dr. Michael Jenike, and will be attended by another IOCDF member as well. It is for parents only. Parents who are unable to attend, may also submit thoughts or concerns to Susanb4312@gmail.com in advance of the conference, and they will be included. This session is not intended to answer parent questions about specific cases, but rather to begin the process of gathering observations from those who are closest to the illness. This session will be held Saturday at 9:45 - 11 am in the Old Town Room, on the 2nd floor of the Marriott. For information about the IOCDF Conference in Chicago, please check: http://www.ocfoundation.org/conference/.

[smartyjones]

agghhh -- help -- this sounds great but my brain is not functioning so well . . . moved recently, many issue with house and now, dad with open heart surgery tomorrow. . .

 

has anyone sent in ideas about BBB -- i'm not sure where to go with it but want to send something.

 

i remain concerned about the role of viruses in PANS.

 

i have some concerns about what an acute PANS state does to a young developing brain (along the llines of how a stroke changes/damages a brain) and the implications of how to heal that when the acute phase is over.

 

has anyone sent in things along these lines or can help me formulate some thoughts?

[dut]

Hi - I was wondering the other day (having read recent info re autism and infection in mother during pregnancy and also being aware of infection during pregnancy and schizophrenia) if anyone has looked at sibling PANDAS spread.

 

For example, are older siblings of a dxd PANDAS child less likely to have it and younger siblings more likely to also be dxd with PANDAS. I just wondered if a change to a mother's immune system or an infection, either during or before a pregnancy, may be contributing and if that immune change may be lasting in some way and thus be affecting later pregnancies.

 

Dunno just a thought. I didn't know if it warranted forwarding on or if too off the wall...

Edited July 26, 2012 by dut

[PowPow]

great thought, dut! this happened here. oldest appear unscathed...younger ones dropped like flies I wonder the exact thing you mentioned about pregnancy and immune changes and illness.

I had H1N1 during preganancy last time, interesting to see how that pans out....

[Kiera]

I think they're all great ideas, please email them to the contact person. I already emailed her (didn't get a reply so hope she got it!) about the fact that sydenham's chorea is a strep infection causing a movement disorder, and this is widely acknowledged and accepted by the medical community. Yet mention the word PANDAS and wait for the slew of derogatory comments - rubbish, controversial, nonsense etc. To dismiss something so readily when there is a precedent already with SD does not make sense! SC was first described in the 1600s, now what type of peer-reviewed papers or double blind placebo trials do you think were done back then?

[LNN]

I think they're all great ideas, please email them to the contact person. I already emailed her (didn't get a reply so hope she got it!)

 

I agree - please email your thoughts/ideas. Don't worry about how it's worded or if it's a "good" idea - that's for researchers to decide if it's something they can/want to pursue. Even if it doesn't lead to a specific study, it can spark a thought or get tied into another study. This is a brainstorming exercise. So no idea or question can be "bad".

 

As for a reply, I wouldn't expect one. The conference starts this morning, so things are already in full swing for those involved. I'm certain the emails will be checked prior to tomorrow's session but there may not be time to compose a reply to let you know it was rec'd.

 

I think both of the above questions should be brought up. I've already sent my very long list, so please forward these on. If anyone can come up with good questions, it's this group!