cfamily Posted January 1, 2011 Report Posted January 1, 2011 Has anyone had a non response from a steroid treatment? We are on step down and symptoms are as strong as ever.
Phasmid Posted January 1, 2011 Report Posted January 1, 2011 Can you explain what you mean, "step down?" What are the symptoms? The prednisone worked well for my son's behavior. He wasn't having tics when he did prednisone, so no data there.
cfamily Posted January 1, 2011 Author Report Posted January 1, 2011 The Step down is gradually reducing the dosage over the course of 15 days.
Phasmid Posted January 1, 2011 Report Posted January 1, 2011 okay, that's what I thought you meant, but wasn't sure. What are the symptoms?
cfamily Posted January 1, 2011 Author Report Posted January 1, 2011 Our dd10 has extreme panic, intrusive thoughts, wanting to hurt herself, die, at night. She has intrusive thoughts and worries all day and has panic attacks at school which have gotten progressively worse over the last 3 weeks. She is a supersmart social child and now she doesn't want to see friends or anyone because she's afraid she will get sick.
dcmom Posted January 1, 2011 Report Posted January 1, 2011 We have had great response sustained, great response short term, and seemingly no response with steroid bursts. I have no explanation of the difference in response we have seen. I hope you see some gains soon.
Fixit Posted January 1, 2011 Report Posted January 1, 2011 the response/reaction from the steroid may lay several weeks out...our first one was 3 weeks post on burst...only lasted about 4 days on taper... i think it seemed better after a week ..a little regression then better again...a little regression then better etc...sawtooth response to which continued past taper to "almost" 100%...did not maintain fullnes of it but held most of it
NVAmom Posted January 1, 2011 Report Posted January 1, 2011 What is the difference between a burst and taper. We've done the bust before so I know what it is. Is a burst just an equally dosed short term steroid with no taper? How long do you usually do a burst? Is ia burst the lowest dosage of a taper? I think I remember a burst is sometimes used diagnostically to see if there is improvement it can be more definitively diagnosed as PANDAS....i think.So is a taper only during exacerbations? Sorry for all the questions!
dcmom Posted January 1, 2011 Report Posted January 1, 2011 I am not sure if burst is a specific technical term. For the most part we have done a four week course, cutting dose each week.
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