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I just took my PANDAS dd7 to see Scott Smith, PA in Edison NJ. She's currently on daily antibiotics (she was Azith & Omnicef, but are changing to Augmentin tomorrow), and has had 4 IVIGs. She's had an up and down response to IVIG. Scott is recommending adding Spironolactone to her treatment regimen. I'm curious how many others have tried this, and if there was a noticable difference. Scott helped publish a paper on this (http://www.icdrc.org/documents/Bradstreet%20Spironolactone%20Author%20Copy.pdf), which I've read and feel that it sounds promising for PANDAS patients. However, for some reason I feel reluctant to start this drug, due to the off-market use. Any insight/advice would be much appreciated.

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I think Stephanie2 used it for awhile. Do a forum search for it and I think you'll find some info.

IMHO, I'd want to see tests that my child does have high testosterone levels. I've been dabbling in research that explores the connection between the various sex hormones and immune/autoimmune problems. Wondering if I should try progesterone for my girl. I don't know enough yet, but so far, as usual, it all seems to be about balance.

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Yes, Scott prescribed spiro for both of my boys and they both did respond to it (neither was in a severe exacerbation at the time, but I did notice a reduction of the symptoms that were there, including an easier time falling asleep and stay asleep for my youngest). I did not notice any negative side effects that I was aware of. I have been able to discontinue one of my son's spiro and will probably discontinue the other in the coming weeks/months.

 

For the purposes of immune modulation and decreasing inflammation, spiro is prescribed in a pretty low dose so as not to elicit side-effects in these kids. It has a very long history of use for other things, you could research the safety profile in that context.

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This is not my own personal experience but I was at a pandas support group meeting about a month ago and one of the parent shared that her dd was doing really well on Spironolactone.( like wow kind of well) We did not have enough time to go in to detail so I cannot share more.

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  • 8 years later...

Hello,I know this is a very old post,but I have  a very important question to ask. We are currently seeing Dr Scott Smith as well. I'm curious about this spironolactone, because my son who is now 14 has developed gynecomastia from probably that same med. We discontinued long long time back,but has anyone had that problem with your kids taking that med even for a short period of time?

 

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