Stephanie2 Posted April 23, 2010 Report Share Posted April 23, 2010 (edited) I know the answer to this, but is this really possible? My 2 year old responded so beautifully to his steroid burst (compliance, easy-going, playful, no tic, no crying at bedtime, etc.). Everyone was amazed at the new child he had become! Then overnight the sympoms returned. Literally, I put him to bed a perfect angel and he woke up crying, hitting, kicking me, inflexible, didn't know what he wanted but would scream if I didn't give him what he wants. Just an impossible child again. Can the changes happen that rapidly? With my 5 year old, the gains slowly faded over a couple weeks, not overnight. Sigh... And by the way, what now? Am I really looking at IVIG for my 26 month old?? I can't believe I am there already... Stephanie Edited April 23, 2010 by Stephanie2 Link to comment Share on other sites More sharing options...
pixiesdaddy Posted April 23, 2010 Report Share Posted April 23, 2010 We saw exactly the same thing with a 5 day steroid burst. Massive improvements and then - if anything - an even worse downslide post-steroids. In fact, at first they suspected steroid-withdrawal rages for our DD9 since it got so bad. That was what precipitated our IVIG because it really sent our daughter into crisis mode, compounded by the added stress of the beginning of the school year. Anyway, yes - we did see a strong remission and then a strong relapse. Pixiesdaddy Link to comment Share on other sites More sharing options...
Worried_Dad Posted April 23, 2010 Report Share Posted April 23, 2010 Yep, we experienced the same thing with our PANDAS son on the prednisone burst - amazing improvement that disappeared almost immediately after the burst. That accelerated our move to IVIG as well. We saw exactly the same thing with a 5 day steroid burst. Massive improvements and then - if anything - an even worse downslide post-steroids. In fact, at first they suspected steroid-withdrawal rages for our DD9 since it got so bad. That was what precipitated our IVIG because it really sent our daughter into crisis mode, compounded by the added stress of the beginning of the school year. Anyway, yes - we did see a strong remission and then a strong relapse. Pixiesdaddy Link to comment Share on other sites More sharing options...
Megs_Mom Posted April 23, 2010 Report Share Posted April 23, 2010 Yes, exactly the same - 80% remission in less than 24 hours, then it all flooded back as soon as the steroid was stopped. I don't think it was worse afterwards - just harder to take after she was so so so so good for 7 days. Link to comment Share on other sites More sharing options...
momto2pandas Posted April 23, 2010 Report Share Posted April 23, 2010 I'm afraid we might be seeing the opposite. The boys were doing very well until we started the steroids; now they look bad and act worse. Today was day 3 of a 2-week course. The were actually better today than the lousy couple of days before, but not as good as they were before we started them. Anyone know if this is cause for concern? I am hoping that it's just an adjustment....I feel pretty crappy on them this time as well. Link to comment Share on other sites More sharing options...
Santi Posted April 24, 2010 Report Share Posted April 24, 2010 I know the answer to this, but is this really possible? My 2 year old responded so beautifully to his steroid burst (compliance, easy-going, playful, no tic, no crying at bedtime, etc.). Everyone was amazed at the new child he had become! Then overnight the sympoms returned. Literally, I put him to bed a perfect angel and he woke up crying, hitting, kicking me, inflexible, didn't know what he wanted but would scream if I didn't give him what he wants. Just an impossible child again. Can the changes happen that rapidly? With my 5 year old, the gains slowly faded over a couple weeks, not overnight. Sigh... And by the way, what now? Am I really looking at IVIG for my 26 month old?? I can't believe I am there already... Stephanie We are different. Things were bad during the 5 day burst. Then by the 6th day things got better, i.e. calm, focused, independent w/work by 7th day really good w/1 tantrum. So far so good. Not sure what to expect. Andrea Link to comment Share on other sites More sharing options...
P_Mom Posted April 24, 2010 Report Share Posted April 24, 2010 Mom2PANDAS, If I recall correctly, your kids are immune deficient? If I am right, then I would think that steroids could be concerning being that they supress the immune response further. Not sure if this is the case....I remember Dr. T stating that steroids should be used with caution, if at all, in immune deficient kids. Again, not sure, just throwing it out there.... Link to comment Share on other sites More sharing options...
momto2pandas Posted April 24, 2010 Report Share Posted April 24, 2010 Yes, they are quite immune deficient. But Dr. B prescribed steroids knowing that, and also knowing that they are getting IVIG in the next couple of days, so I assumed he knew what he was doing. He said that we needed to get the inflammation in their sinuses down so that they could drain (which was not happening at all, still not happening enough), else the bacteria would just stew in there. They now seem to be getting better rather than worse from the bottom a couple of days ago, but I still think they were better off before the pred behavior-wise and in how healthy they looked. I do notice that their pupils seem to be smaller, interestingly. Mom2PANDAS, If I recall correctly, your kids are immune deficient? If I am right, then I would think that steroids could be concerning being that they supress the immune response further. Not sure if this is the case....I remember Dr. T stating that steroids should be used with caution, if at all, in immune deficient kids. Again, not sure, just throwing it out there.... Link to comment Share on other sites More sharing options...
parents4eyes Posted April 24, 2010 Report Share Posted April 24, 2010 (edited) x Edited September 8, 2010 by parents4eyes Link to comment Share on other sites More sharing options...
dcmom Posted April 24, 2010 Report Share Posted April 24, 2010 (edited) Both of my girls have had two steroid bursts. Both bursts were the month long, tapering, doses. Both had one dose that worked REALLY well, and gave us longer term results. Both also had a previous burst that worked, if less so, but then afterwards went downhill fast. I think the downward spiral was due to illness and/or exposure- but it is hard to be sure. They are both on another burst now. Of course I am anxious. I read this in the Sydenham's Chorea treatment section of Wemove.org, and plan to do this with them to prevent any post-steroid issues if possible. As a side note, FWIW, our doc did say it takes longer than their course of steroids to become immunosuppressed. " Steroid therapy should be limited in duration and dosage levels to help reduce adverse effects. In addition, such therapy should not be abruptly discontinued; rather, dosage levels should be gradually reduced (tapered down). As steroid dosage levels are tapered, physicians may recommend adding salicylates to help prevent a possible "rebound" of inflammatory symptoms. Salicylate therapy may be continued for approximately 2 to 4 weeks following the cessation of steroid administration" Ibuprofin is a salicylate. Edited April 24, 2010 by dcmom Link to comment Share on other sites More sharing options...
Stephanie2 Posted April 24, 2010 Author Report Share Posted April 24, 2010 Momto2pandas, A couple things come to mind. I have heard that some ppl get depressed/irritable when on steroids. Also, steroids can cause gut yeast/bacteria which can have behavioral side effects. Maybe up the probiotics for awhile. Stephanie Link to comment Share on other sites More sharing options...
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