norcalmom Posted February 10, 2011 Report Share Posted February 10, 2011 http://www.blogtalkradio.com/show.aspx?userurl=the-coffee-klatch&year=2011&month=02&day=10&url=dr-susan-swedo--nimh Link to comment Share on other sites More sharing options...
SarahJane Posted February 10, 2011 Report Share Posted February 10, 2011 OMG...I almost forgot! How'd that happen when PANDAS dominates everything?! LOL! Link to comment Share on other sites More sharing options...
butterflymom Posted February 10, 2011 Report Share Posted February 10, 2011 (edited) = Edited February 3, 2016 by butterflymom Link to comment Share on other sites More sharing options...
Blessedwifeandmom Posted February 10, 2011 Report Share Posted February 10, 2011 What did you guys think? I enjoyed the show. I was initially worried when the talk about sudden onset started. . . Swedo seems so big on that, but she later softened and admitted that it is difficult after the first initial episode, because a child can not always completely remit and can have a more waxing/waning course. I appreciated that she talked about PITANDS and said the upcoming study and future studies will be looking for other triggers such as mycoplasma and chronic lyme, and that they will be looking at brain imaging and spinal taps. There was plenty of talk about viruses being a trigger to set off the immune system in a PANDAS child. They are really trying to figure this out. Also, I was particularly interested to hear her describe OCD in children of varying ages. She said in young boys around age 5, it can present as ADHD and hyperactivity. Yes!!!!!!!! I've been wondering if these lingering symptoms are attributable to PANDAS. She also mentioned the spacey processing problems our kids can have in school. She's really a great researcher. What did you guys think? I was encouraged to know that most kids grow out of it. I had no idea about that. I was thinking my son might suffer for the rest of his life with this. Also, we haven't done any behavioral therapy and after what she said about the success being as good as some of the other treatments, I'm going to be doing that as soon as I can find a good therapist. Link to comment Share on other sites More sharing options...
Megs_Mom Posted February 10, 2011 Report Share Posted February 10, 2011 I was encouraged to know that most kids grow out of it. I had no idea about that. I was thinking my son might suffer for the rest of his life with this. Also, we haven't done any behavioral therapy and after what she said about the success being as good as some of the other treatments, I'm going to be doing that as soon as I can find a good therapist. I missed it, but will try to hear it on tape. Just FYI (you know this, but for others that are reading this) it's called ERP therapy (exposure & ritual prevention) and is a type of CBT. Ask therapists about ERP for kids specifically to be sure they have experience. I am a huge ERP supporter, but would caution that it is not a cure for a child with multiple exacerbations. We find it smooths things out & prevents the meltdowns and so far (knock on wood) the severe exacerbations, but we also use medical intervention (abx, supplements, prompt treatment of respiratory illnes, motrin) for prevention and treatment when she gets a blip. If you want to start reading a little about this, you can start with the kids work book "what to do if your brain gets stuck". It's awesome & is available on Amazon. Reading this before therapy starts, even if you don't use the tools yet, is great preparation. Link to comment Share on other sites More sharing options...
norcalmom Posted February 10, 2011 Author Report Share Posted February 10, 2011 you can listen to it by clicking on the link. It stays posted up there. We should probably add it to "pinned" information - does anyone know how to do that? BTW - thats me asking how the new study will deal with co-infections like lyme and myco P...being able to only ask one question was a tease! Could have grilled her all night. It was pretty good - I was expecting the same old stuff - pandas 101 - but there was a lot of new info. New name - PANS was mentioned. I have to spend some time looking up a couple people she mentioned Ian Lipkin and John Pardo involved in the study this morning. And I was only half listening because it was dinner time, I missed the first 20 minutes. I'm sure that was all the basic stuff. I have to listen again and take some notes. The moderator was AWESOME - that's probably why the interview was so good - she has a daughter that was dx'd with pandas (years ago, a very mild case that she grew out of). So, she had some pretty informed questions for Swedo! http://www.blogtalkr...san-swedo--nimh Link to comment Share on other sites More sharing options...
EAMom Posted March 8, 2011 Report Share Posted March 8, 2011 Did everyone listen to this? What did you think? I found it a little concerning that Sweedo really emphasized that PANDAS was acute...I think there are some cases that are less acute...esp. those with undetected strep/carriers, that ramp up a little more slowly with each stress/tooth extraction/illness. Also, it could be hard to ID "acute" when it's a toddler in the midst of the "terrible twos". Her blurb on prognosis was interesting. She did imply that untreated PANDAS could result in long term problems...she mentioned repeated untreated episodes with SC. I only listened 1x...I should listen again. Link to comment Share on other sites More sharing options...
jdude Posted March 9, 2011 Report Share Posted March 9, 2011 (edited) Did everyone listen to this? What did you think? I found it a little concerning that Sweedo really emphasized that PANDAS was acute...I think there are some cases that are less acute...esp. those with undetected strep/carriers, that ramp up a little more slowly with each stress/tooth extraction/illness. Also, it could be hard to ID "acute" when it's a toddler in the midst of the "terrible twos". Her blurb on prognosis was interesting. She did imply that untreated PANDAS could result in long term problems...she mentioned repeated untreated episodes with SC. I only listened 1x...I should listen again. I know what you mean about the "acute" thing. The first neurologist I visted did believe in PANDAS (but had no clue about treatment), but he felt my son's symptoms weren't "extreme" enough to be considered PANDAS. At that time he had just finished a 20 day antibiotic treatment and his symptoms were way lessened. Even now with his recent symptoms, the average person wouldn't notice unless they spent time in my home...he keeps his OCD in check at school, but at home it's a whole different story. Edited March 9, 2011 by jdude Link to comment Share on other sites More sharing options...
airial95 Posted March 10, 2011 Report Share Posted March 10, 2011 Also, it could be hard to ID "acute" when it's a toddler in the midst of the "terrible twos". Amen to that!!!! (Says the mom of one with onset just before his 2nd birthday!) Link to comment Share on other sites More sharing options...
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