articles on long-term abx for PANDAS?

[SarahJane]

Does anyone have articles about long-term, daily abx for PANDAS that they can share? I have been told by Dr. K that I will need to get our next rx from our local ped. Not sure how easy that will be. I would prefer to do another year of daily. Right now he's on azithromycin/250mg/daily. I was thinking there was something that talked about treating PANDAS with the RF protocol of abx until 18 or 21. Did I dream that?

 

We are 14-months post-IVIg. Doing well, but trying to decide if we are going to need a booster IVIg. (Am going to do another post to ask about that. sigh)

[Mayzoo]

I am looking, and I have the "Saving Sammy" book I am browsing the references for you. So far, I have found only one article that appears to be in support of long term abx.

 

"Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders." My link

 

I will keep looking.

[SarahJane]

Thanks! I always forget about Saving Sammy as a resource. Our ped read the book, so that might work. I will go thru it and mark the pages.

 

Thanks for that link too. I need to go thru all the articles I have saved in my PANDAS folder & see if I have something there too. If I find anything else, I'll post here too.

 

If we do another IVIg, then we'll get the rx from our specialist. I have a stash of zith we're using now that's from where we were on Biaxin for 12 weeks (2 separate 6 week stints), and I still filled my regular rx. I am no fool!

[thereishope]

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Edited September 30, 2019 by Vickie

[SarahJane]

That's what I was thinking Vickie. I must've imagined it, but I thought there was at least one article that mentioned that protocol for PANDAS. I am not sure that I will need that much back up (and I still have about 2 months of zith anyway ). Of course now that we're looking at the possibility of another IVIg, we're seeing other symptoms (including trichotillomania and big irrational anger thing tonight). Ugh. On the other hand, if we do the IVIg, we'll get the abx with it. ::sigh:: I sure wish there was an easy protocol to follow. That which does not kill us (or drive us insane) makes us stronger, right?

[Mayzoo]

That's what I was thinking Vickie. I must've imagined it, but I thought there was at least one article that mentioned that protocol for PANDAS. I am not sure that I will need that much back up (and I still have about 2 months of zith anyway ). Of course now that we're looking at the possibility of another IVIg, we're seeing other symptoms (including trichotillomania and big irrational anger thing tonight). Ugh. On the other hand, if we do the IVIg, we'll get the abx with it. ::sigh:: I sure wish there was an easy protocol to follow. That which does not kill us (or drive us insane) makes us stronger, right?

 

 

Here is the full article link: My link

 

I have not found any others yet, but the one I listed speaks specifically of PANDAS and states this:

 

"In this study both penicillin and azithromycin prophylaxis

were found to be effective in preventing GAS infections and

decreasing neuropsychiatric symptom exacerbations among children

in the PANDAS subgroup when compliance was assured.

These results suggest that antibiotic prophylaxis may play a role

in the management of children in the PANDAS subgroup, as well

as provide support for the assertion that GAS plays an etiologic

role in some children with tics and/or obsessive-compulsive

disorder."

Edited January 18, 2012 by Mayzoo

[SarahJane]

Thank you for the article Mayzoo!