How long after steroid burst before behaviors come back?

[parents4eyes]

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Edited September 9, 2010 by parents4eyes

[parents4eyes]

bump. somebody's got to know the answer.

[peglem]

From what I've gathered on this forum, it seems to vary widely from person to person, as does the success of prednisone.

[Worried_Dad]

We only did the 5-day prednisone "mini-burst" per Dr. K. For us, the improvement was dramatic... but the slide back downhill was just as fast. Within a few days of stopping the steroid, our PANDAS son was back in the nightmare zone.

 

Dr. K did tell us that the length of time post-burst during which symptoms remain milder varies widely from patient to patient. I think he mentioned that one patient maintained improvement for 60 days post-burst.

[dcmom]

Unfortunately, as with most aspects of pandas- there is no way to plan around the steroid burst. I have two girls, who have done a total of 5 steroid bursts over the last year and a half. EVERY time was different, ranging from maintained improvement until today (from 9 mos ago) to beginning a backslide on the tapering dose. I really don't think anyone is going to be able to give you the answer you are looking for

[LNN]

I'm in the camp that feels prednisone is not necessarily a temporary treatment. For us, once the infection is cleared, or the person who's exposing my son is cleared, if we do a prednisone taper, the pandas episode is successfully and completely halted by the end of the taper. It's only with a new exposure that another episode will start (or if the triggering infection is still around).

 

I know not everyone agrees with this, but it's been our experience. For us, it's had phenomenal results.

[Kayanne]

I'm in the camp that feels prednisone is not necessarily a temporary treatment. For us, once the infection is cleared, or the person who's exposing my son is cleared, if we do a prednisone taper, the pandas episode is successfully and completely halted by the end of the taper. It's only with a new exposure that another episode will start (or if the triggering infection is still around).

 

I know not everyone agrees with this, but it's been our experience. For us, it's had phenomenal results.

 

I agree with LLM. This has been our experience too.

[NancyD]

I'm in the camp that feels prednisone is not necessarily a temporary treatment. For us, once the infection is cleared, or the person who's exposing my son is cleared, if we do a prednisone taper, the pandas episode is successfully and completely halted by the end of the taper. It's only with a new exposure that another episode will start (or if the triggering infection is still around).

 

I know not everyone agrees with this, but it's been our experience. For us, it's had phenomenal results.

 

I agree with LLM. This has been our experience too.

 

Ditto for us too.

[Mary M]

Our dd12 had the 5-day burst prescribed by Dr K. We saw lovely improvement 3 days after the burst then on day 4 after the burst my dh and I got the flu and we experienced the biggest nightmare week end (days 4-5-6) of our lives, day 7 dd broke out in scarletina rash for a week and then we had IVIg on day 14 after pred burst. So I can contribute little of value as her body was a train wreck during that time.

Mary

from Michigan

[T_Mom]

I believe that Dr K told us once that the longest he had seen steroid effects last was 90 days (I think that was the limit he said...)--BUT that was 2 years ago and before we were all using full strength long-term antibiotics...as an ongoing treatment!

 

We have had LASTING effects long-term after the steroid burst when we continued with FULL strength ongoing antibiotics...still on them!

[parents4eyes]

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Edited July 17, 2010 by parents4eyes

[T_Mom]

I believe that Dr K told us once that the longest he had seen steroid effects last was 90 days (I think that was the limit he said...)--BUT that was 2 years ago and before we were all using full strength long-term antibiotics...as an ongoing treatment!

 

We have had LASTING effects long-term after the steroid burst when we continued with FULL strength ongoing antibiotics...still on them!

I didn't realize that some of your kids stayed improved with a burst. I am not going to get my hopes up, but boy would that be a dream come true. I will just enjoy these days while I have my daughter (mostly) back (and stop fearing when the nightmare will return). She is writing in her diary again!!!

 

 

Parents4eyes--please note that our d continues on FULL strength antibiotics, during and ever since the steroid burst.

We see it as the steroid burst "kicked her up and over" back to herself, but the antibiotics are definitely treating her and continue to--we believe. It took months and an additional steroid burst to get back to herself--and we continue full antibiotics which I believe have some anti-inflammatory effect.