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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Very recently I received an 'antibiotic challenge' reccomendation as a diagnostic measure for PANDAS, Augmentin 875mg (14 days) was recommended from a private consult. Henceforth, I went forward to my G.P with an honest account of suspicion for PANDAS as well as the possibility of active infection(s)- relating to sinus and chest. With some skepticism I managed a kind  referral but only a 7 day course of amoxicillin 500mg - 3rd day in. My question is : Is this likely to be effective or sufficient in relieving or indicating my condition? I've have noticed some minor side effects including stomach cramps and tiredness, Will these abate? Also, how long until the therapeutic effect becomes noticeable? Of course, I'm hoping for a positive response to the drugs. I've have experienced many disabling neuro-cognitive effects during flair up periods, but have read much about the anti inflammatory properties of antibiotics which was also explained to me during consult. Should standard amoxicillin be enough? 

 

Thanks for taking the time read. If you read my other posts you may get the overall picture. My most troubling symptoms are related to cognitive dysfunction - I'd do anything to reverse them . Any experience or advise is much appreciated. 

 

 

Edited by Hitman3161

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Hitman -- Remind me where you're located...in the States?  Somewhere abroad?

I suspect that the dose of and composition of the amoxicillin you've been given is going to fall short in terms of desired mental impacts.  Not only is the dosage low, but straight amoxicillin lacks the clavulanic acid adjunct that Augmentin includes (amoxicillin plus clav acid), and there has been research regarding the mental benefits of clav acid.

Some PANDAS kids here (mine included) benefitted greatly from Augmentin 875 mg. or, even more so in our case, Augmentin XR which is an extended release formulation which comes in 1,000 mg. tablets.  The advantage of the XR may be that it stays active in the system longer given that cellulose component which allows it to distribute more slowly, but if I recall correctly, the straight Augmentin 875 mg. contains a higher clav acid component, which might be why your consult suggested this.  I know there's a thread or two here on the forum regarding this, so you might run a search for "clav acid" or something along those lines and see what you find.

As for the gastro-intestinal impacts, yes, I think those will fade over time as your body adjusts to the addition of the abx.  I would add a probiotic or two, if you haven't already, to help repopulate your gut flora and keep things from getting off-kilter there.  This might be another vote for the XR formulation, too, since the entire dose won't hit your system at once.

In terms of feeling the effects/impacts, it really does vary.  My son was entirely non-functional at the point that we finally got access to abx for him, and he was markedly improved within 48 hours of his first dose; however, again, he started at such an incredibly low point, almost anything would have been an improvement at the time.  In his case, return to full, up-to-speed cognitive function was a longer, slower process (sorry); the lift of the brain fog, improvement in executive functioning, return of clear "normal" speech patterns, etc. were a slow, gradual result.  In his case, I attribute that to the duration of time for which he suffered before we got meaningful help and the need for the inflammation to be halted and reduced, healing of the blood brain barrier (BBB), etc.  Why I think it likely that, given the right abx at the right dose, you are likely to "feel" better within a relatively short period of time (mood lifting), I suspect it will take a little longer for the brain fog to clear and your cognition to return in full.

Sorry you're dealing with this but I wish you a speedy recovery!

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Hi MomwithOCDson

 

Thanks for such a detailed and informative response. Unfortunately, I'm in the UK where PANDAS isn't universally regarded within the mainstream medical community. Treatment is even more difficult due to antiquated guidelines and lack of awareness. My phone consultation was with Dr Kovacevic who agreed that the prescribed dose was too low, and  who made the pre-emptive suggestion of 875mg Augmentin. Although, I can not fault my G.P. Despite being unaware and inexperienced with the concept of PANDAS, he made kind referral and was very open minded and interested in learning more - always the signs of a highly competent Doctor. Still, it is intensely frustrating feeling so stuck, I just want to make some progress. The next stage is a T&A and then with some luck IVIG. Although, I may have to travel, I'm unsure of whether or not I can do this state side with Dr K if all fails over here. Either way, I'm 24 and really don't have much time! 

 

Thank you so much for the post, I could emphathise so much with the symptoms. It was very ascribing to the fact that this living can be treated and ver much accounted for. Very reassuring indeed!

 

Edited by Hitman3161

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Also, just to quickly add I have added a probiotic, to be taken two hours after every dose of amoxicillin. The problem is that it's apparent that seven days won't be enough and a prophylactic dose may be required. Would doxycycline be an adequate substitute? I have read that tetracyclines (particularly minocycline and doxycline) are highly effacious in penetrating the bloodbrain barrier and exhibit strong neuro anti inflammatory properties. I know they are indicated in active neuroboreliosis and mycoplasma infections, but would they they be as effective in the treatment of PANS/PANDAS? As I have a plentiful supply.

Thanks once again.

Edited by Hitman3161

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