hawks Posted January 13, 2011 Report Share Posted January 13, 2011 I posted this ? on our original thread and only received a few responses. Thought if I started a new thread with this specific ? we might receive some more feedback. Our DS14 is on day 8 of a 5-day steroid burst (35 mg of prednisone per day). Thru day 7 his OCD/anxiety steadily increased in intensity, day 6 being off the charts. Day 7 was a little better, not sure wether to attribute that to the steroid taking effect, or the fact that we met with a neuroligist at the Univ. of Iowa yesterday to discuss IVIG treatment (which he is terrified by that prospect - he is afraid of needles) and he is thinking he needs to get this under control to avoid the IVIG. The question is: What have others experienced during/after this 5-day steroid burst? Link to comment Share on other sites More sharing options...
adkmom Posted January 13, 2011 Report Share Posted January 13, 2011 We're about 8 days off of steroids. My DS4 was taking 30mg daily for 6 days and then tapered for 6 days. I guess it was a steroid burst although the dr. didn't call it that. we were using it for a possible sinus infection. Most symptoms (excepted hyperactivity, inability to focus and some aggression) got better including fears and tics. But 3 days off, symptoms started to return, slowly. don't see the tic much but some fears/anxiety although mild. We're just waiting and seeing. The dr. warned us that after the steroid is stopped, symptoms can typically resurface...just another confirmation that there's an inflammation problem (ie Pandas) Don't know if thiis helps...but you're not alone. Link to comment Share on other sites More sharing options...
hawks Posted January 17, 2011 Author Report Share Posted January 17, 2011 thanks adkmom for your reply. Anyone else? Link to comment Share on other sites More sharing options...
peglem Posted January 17, 2011 Report Share Posted January 17, 2011 We've had 3 or 4 five day bursts. Usually we see immediate improvement on them, and a resurfacing of symptoms slowly afterwards. The 1st one we ever did, my daughter got ill afterwards, with a fever. Link to comment Share on other sites More sharing options...
Kiera Posted January 17, 2011 Report Share Posted January 17, 2011 Hi, My ds 8, showed dramatic improvement on day 5 of a 5 day steroid burst, (80% improvement) then started antibiotics and continued to improve over the next 5 months, in complete remission now and on prophylactic antibiotics three times/week! Link to comment Share on other sites More sharing options...
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