GraceUnderPressure Posted January 26, 2011 Report Posted January 26, 2011 Dr. R follows Dr. K's 2-day IVIG protocol. When I asked him about IVIG initially making things worse, he said that he sometimes gives cortisone (not sure if he said pred or hydrocort or even named what form now) along with it & that seems to reduce the negative effects. So I would like to hear if anyone else had it done that way & did it seem to make a positive difference? (We tested for Lyme at our last appt & will be going over those results before we commit to IVIG)
PhillyPA Posted January 26, 2011 Report Posted January 26, 2011 We just finished our 4th ivig yesterday and we are starting him on a three week steroid taper. I am curious to see how this will work. We never did steroids after an ivig before. I think it is a fantastic idea. Especially since my son did really really well on steroids last year.
Tamistwins Posted January 26, 2011 Report Posted January 26, 2011 Dr. B treats with orapred, a steroid 2 days before ivig 2 days of the ivig and 2 days after. They also give benadryl and motion. Both my children did really well. There were no headaches or bad side effects.
mkur Posted January 26, 2011 Report Posted January 26, 2011 Dr B prescribed my son prednisone 20mg - 2 tablets for 6 days - starting 2 days before treatment. My son is 19 and 150 lbs. You have to give it in the mornings (so they will sleep at night) and with food. The IVIG nurse gave it to him when he would eat. My son is not a morming person (just getting him up and dressed is a hassle) and will not eat breakfast food. He eats when he gets there. It helps to pass the time. My son didn't want to take it afterwards one time and got a major headache which went away after he took the med - so it works for him. Good luck
GraceUnderPressure Posted January 27, 2011 Author Report Posted January 27, 2011 (edited) Thanks, all, that's encouraging! mkur, did your ds have the ivig recently? Is he a recent dx or has he had PANDAS/PITAND for a while? I'd love to hear how it went - if it made things worse initially, if it seems to be helping. I'm wondering/worried how my ds18 will react to it being older & having had this for at least 14 yrs already. P.S. We're just west of Houston - are you anywhere near? Edited January 27, 2011 by GraceUnderPressure
NancyD Posted January 27, 2011 Report Posted January 27, 2011 Dr. B prescribed prednisone for DD's infusion yesterday and today so we can increase the rate without getting a headache. DD did not get ANY headaches at all -- just sleepy after. We were very pleased. Think we will do this for all future infusions! Nancy
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