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Susan Swedo's latest presentation


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Thanks for posting. Very interesting. Wish I could send it to all the doctors that are such non-believers

 

 

You're welcome! I have several calls in to the people who run the website asking them to please post the Q&A session that followed. I'll let you know if I have any luck.

-Peggy

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Thanks Peggy! Really worth watching. I *loved* Swedo's subtle jab at certain neurologists (that would be Kurlan) who feel PANDAS is contraversial. That stuff about the REM sleep in autistic kids was also very interesting too...I wonder how that ties into PANDAS kids who also can have sleep problems.

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Thanks Peggy! Really worth watching. I *loved* Swedo's subtle jab at certain neurologists (that would be Kurlan) who feel PANDAS is contraversial. That stuff about the REM sleep in autistic kids was also very interesting too...I wonder how that ties into PANDAS kids who also can have sleep problems.

 

 

Hi EAMom,

I agree! I also thought it was interesting that Swedo seemed to think IVIG was more risky than plasmapheresis. My DD got a steriod burst over the Christmas break, and responded beautifully. I saw a sunny side of her personality that I thought was gone forever. I'm really agonizing over IVIG - Swedo said two of her patients contracted Hepatitis C. Does anyone have info on how the manufacturers ensure a safe product, and what their track record is? Product recalls? People sickened by the procedure? So, I googled plasmapheresis, which doesn't seem like a stroll in the park either! No easy choices here. I'm keeping the pressure up for the tech people at this website to post Swedo's Q&A. I'll keep everyone posted.

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Yes, that was interesting that Swedo thought IVIG was so risky. I know they use it for a lot of other diseases, including to prevent miscariages in some women.

 

The other interesting thing I noticed was that the kids in the Swedo study that were on pen or azith. prophylaxis didn't have complete remission of symptoms (at least the ones she showed) but were improved (less exacerbations). I wondered how much better the kids would have done on a higher dose of abs...I think Swedo said used only a 1x weekly dose of Azith. (500mg?).

 

Peggy...how did your dd do on the Azith? What dose did you end up with? How long has she been on it?

 

Yes, I have read other things implied IVIG was less risky than plasmaphoresis. Also, I got the impression that IVIG was more likely to be a "permanent" fix than Plasmaphoresis.

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Dr Swedo's Q&A session is now available at:

 

http://www.autism.com/danwebcast/videoflv....=640&VID=95

 

She shared the stage with another doctor, and really didn't get that much time to speak. Still worth watching.

 

EAMom - "I think Swedo said used only a 1x weekly dose of Azith. (500mg?)." Yes, Swedo said her patients were given Azith 500mg 1x per week.

 

My dd is currently at 250mg daily. She is tolerating it well, and it seemed to eliminate a good deal of anger/tantrum behavior, but we still had big emotional/mood issues. Everything disappeared on a steriod burst - my lovely, happy, funny, laughing joking daugther back.

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Everything disappeared on a steriod burst - my lovely, happy, funny, laughing joking daugther back.

 

That happened here, too, with the first steroid burst. My dd takes 250mg 1x daily Azith as well. I think it might just take longer than I expected to work...months, a year perhaps...although in listening to Swedo's talk I was again reminded of how the extreme separation anxiety was gone with the first antibiotic and never returned!!!

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I spoke with Dr. Swedo a couple of times at the conference (I was actually there to stalk her and talk with her about my son) and she explained to me that the IVIG they used in their study was more risky at that point for Hep C. I'm sorry I don't remember why, but it's my understanding that they screen better for that now. The reason she gets so strong in the talk about only doing IVIG once is because I had been told by a couple of DAN! doctors at the conference that for kids with PANDAS and Autism, several IVIG treatments were necessary. Our DAN! doc is actually listening to Swedo and we are doing it once at Dr. K's levels.

 

 

Hi EAMom,

I agree! I also thought it was interesting that Swedo seemed to think IVIG was more risky than plasmapheresis. My DD got a steriod burst over the Christmas break, and responded beautifully. I saw a sunny side of her personality that I thought was gone forever. I'm really agonizing over IVIG - Swedo said two of her patients contracted Hepatitis C. Does anyone have info on how the manufacturers ensure a safe product, and what their track record is? Product recalls? People sickened by the procedure? So, I googled plasmapheresis, which doesn't seem like a stroll in the park either! No easy choices here. I'm keeping the pressure up for the tech people at this website to post Swedo's Q&A. I'll keep everyone posted.

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Peggy,

 

I'm so happy that your dd is doing better!! Ha ha! So now you know it was the PANDAS (and not parenting) that was making your dd tantrum <_< Have you thought of giving the old (non-PANDAS believing) docs an update at some point? ... so others don't have to go through what you did with them.

 

I think I would do the IVIG if I were in your position. We're definitely thinking of doing it on our dd this summer. (You might not want to wait so long since your dd is older.)

 

Indigo,

have you considered adding advil (ibuprofen) to the Azith? We gave ibuprofen (200mg in the am) every day the first 2 mo. our dd was on Azith...we think it helped cut down on the brain inflammation. (You can't use it at the same time as steroids though.)

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Thank you for posting the Sweedo presentation. I was wondering if anyone else thought it was odd that she kept refering to PANDAS as a subgroup and not a diagnosis. Did those of you who did notice think she was referring to PANDAS cases as a PDDNOS? Are we to believe this is a spectrum disorder? It may be easier to get treatment and belief from Dr's and school assistance if it falls into the autistic spectrum disorder. Schools and Dr's believe Autism exists. Also did you hear her mention these kids would seem almost bipolar by the mood swings and change in behaviors during the exacerbation period? For us it is the behaviors that cause us the most trouble here at home. We have found mood altering meds work best at keeping his tantrums and attention more even balanced. I pray we won't need them forever but for the time being the meds along with antibiotics are a necessity. Will the new drugs she mentioned riluzole help with the moods? FIY some studies out of NIH relating to PANDAS

http://patientinfo.nimh.nih.gov/AutismPediatric.aspx#178

 

 

Michele

 

 

Peggy,

 

I'm so happy that your dd is doing better!! Ha ha! So now you know it was the PANDAS (and not parenting) that was making your dd tantrum :) Have you thought of giving the old (non-PANDAS believing) docs an update at some point? ... so others don't have to go through what you did with them.

 

I think I would do the IVIG if I were in your position. We're definitely thinking of doing it on our dd this summer. (You might not want to wait so long since your dd is older.)

 

Indigo,

have you considered adding advil (ibuprofen) to the Azith? We gave ibuprofen (200mg in the am) every day the first 2 mo. our dd was on Azith...we think it helped cut down on the brain inflammation. (You can't use it at the same time as steroids though.)

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