5 day steroid burst

[keeptrying]

Just got cam k back for dd9 and it was 164. Have not been able to talk with Dr. Cunningham yet but understand this puts us in the higher than average category. Our next step is steroid burst in addition to more testing. What should I expect? I have read of some experiences but could use a little more help. I a nervous beyond words but feel we need to. The tics are so high right now that I feel we MUST do something and move forward.

 

So, good experience, bad experience? How long did it take to see anything? Anyone have bad explosion in symptoms during or after? How soon did symptoms return?

 

Thanks everyone.

[T_Mom]

Our experience (3 steroid bursts with older d in 2 year period) has been overall very positive. Her primary symptom was sudden onset OCD. She had mild face stretching tics, and a few other mild tic issues at times. OCD and tics were diminished with steroids.

 

In our experience it was variable, ups and downs for a few days/weeks -- during and immediately after steroids until things "settled". I would definitely continue antibiotics prior to and after steroids--hope this helps.

[keeptrying]

Our experience (3 steroid bursts with older d in 2 year period) has been overall very positive. Her primary symptom was sudden onset OCD. She had mild face stretching tics, and a few other mild tic issues at times. OCD and tics were diminished with steroids.

 

In our experience it was variable, ups and downs for a few days/weeks -- during and immediately after steroids until things "settled". I would definitely continue antibiotics prior to and after steroids--hope this helps.

Thanks for the fast reply. Our doc never mentioned the need for abx after. My dd was on 2 wks zithro and 2 weeks omnicef about 2 weeks ago but not anymore. Did you have active infection at the time? I was told that 5 days would not cause probs even if there was a hidden underlying infection. What was your experience? Thanks so much.

[T_Mom]

Our d was being treated for suspected Pandas, due to the sudden onset OCD -- yes, very symptomatic with OCD issues, but she did not culture pos. nor were her blood titers pos. for strep.

 

In her case, we believe it was either "not the first" time that she was exposed to strep, so a different illness was triggering the Pandas autoimmune reaction.

 

There is no doubt that for our d the steroid bursts have been very positive. Be sure to read the "Helpful Threads" section at the top of the Pandas forum page -- especially the FAQs and the flowchart for following treatments which Buster posted. We found these very helpful.

 

The reason I would continue antibiotics is that we believe it took time for our d to heal -- and many have found long term antibiotics to be very helpful (ie., Beth Maloney and her book, Saving Sammy, etc.)

Edited October 9, 2010 by T.Mom

[thereishope]

We also had a good experience with a 5 day steroid burst. For us, we started to see good things on day 4, when 3 full doses were in the system. For us, we did not see dramatic chages but instead it stopped the spiral down and from that point,we slowly started to see improvement. Luckily, with my son, it was not temporary as it may be with some kids.

 

As it has been mentioned on here before that some people with TS can experience a worsening of tics with a steroid. Just want to throw that caution out there.

 

As for antibiotics, if you can get an extension on the script, I would try. Even if you think the infection is gone, an antibiotic would hopefully lower chance of reinfection. Reinfection while recovering can really throw a lot of bad things your way. That happened to us and it really did a number on him....such a dark place.

[peglem]

My daughter has had 3 5-day bursts. The first one was in the midst of a bad PANDAS flare. She was having dental problems at the time. During the course we saw good improvement, but by the end of the burst she was sick with some kind of infection (guessing viral because she was on abx at the time). Thinking the steroid suppressing the immune system allowed the pathogen to proliferate. We saw only a little improvement with that one and only during the burst.

 

2nd burst given w/ high dose, heavy duty abx combo- heckalotta improvement! Just not sure if it was the abx, burst or both combined that brought about improvement.

 

We just finished our last 5 day burst a week ago- normal abx (500mg zith) with a 2 week course of bactrim on top. We started the prednisone 5 days into the bactrim, so we could see if the bactrim alone would help. Just the bactrim (on top of her regular zith) did nothing. Prednisone did give us a modest improvement (she has some molar related inflammation causing mouth pain), but nothing as magnificent as that second burst.

 

I would recommend abx before, during and after burst- because there is no way to know if there is some underlying infection that might bloom rapidly if the immune system is suppressed.