Newly diagnosed

[Jencook]

 We are in the midst of PANDAS as ds (12 years old) was diagnosed officially 10/22/18.  We have been so lost and on our own until I discovered PANDAS myself.  We now have a PANDAS specialist (one of only 2 in CO) and are trying the second antibiotic so far.  We did azithromycin for 10 days along with  Prednisone for the first 5 days.  We did not notice any change whatsoever.  Now we are almost 48 hours into augmentin xr 1000mg 2x/day and both mornings so far have been a nightmare.  Has anyone experienced a decline in the first few days and then progress after that??  We are at such a loss and were so hopeful about the augmentin regimen after reading Saving Sammy and their experience with PANDAS.  

Also, I would love to hear any experience with IVIG as we have an appointment January 28, 2019 with the other PANDAS specialist in CO and he does the IVIG.

ANY HELP, ADVICE OR ANYTHING AT ALL WOULD BE GREATLY APPRECIATED.  

 

Edited November 8, 2018 by jencook

[Mamafour]

How are you all doing now?

[bobh]

I'm sad that you had no response immediately after your post.  You have probably discovered by now, what is known as the herx reaction.  It is actually a good thing, showing that the abx is working.  How are things now?