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Well we are in month 19 of PANDAS and there seems to be no relief..DAN! Dr suggested 3-D scan to see inflammation etc..I had considered this along time ago when we didn't know what was wrong..Has anyone ever done this? It's about $3200.00 If it does show alot then it could be helpful in treatment?? not sure what to do?? My son is full of OCD & spacey and we've had 2 IVIGS with no improvement at all! THANKS..Sarah

Posted

Well, that's a whole lot of cash! Will the course of treatment be different if inflammation shows up? It seems like you're already doing a lot, treatmentwise. For me, I think I'd rather try a course of antiinflammatories and see if it helps. I believe Susan Swedo is doing a trial of minocycline (but on regressive autism subjects, with LP's that indicate inflammation) to see if there is symptom resolution with that. 'course there is always the insurance company wanting a clear dx that would warrent the treatment, but even out of pocket, it would be cheaper than 3D MRI.

 

I feel your desperation and sympathize, though. I sure have thrown away large chunks of money, trying to find answers and more importantly, relief.

Posted
  Pudgeo said:
Well we are in month 19 of PANDAS and there seems to be no relief..DAN! Dr suggested 3-D scan to see inflammation etc..I had considered this along time ago when we didn't know what was wrong..Has anyone ever done this? It's about $3200.00 If it does show alot then it could be helpful in treatment?? not sure what to do?? My son is full of OCD & spacey and we've had 2 IVIGS with no improvement at all! THANKS..Sarah

Sarah is your son on antibiotics daily? If not, I would stop all the testing and give it a try. It may take a few weeks, but it helped my son greatly!

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