Steroid burst questions-16 yr old

[MSmom]

My 16 year old daughter did a 5 day steroid burst and is on day 16 now, counting from the first day she took it. She is really not seeing benefits in her mental condition. Her PANDAS diagnosis is definite, so we were hoping we'd see something good from the prednisone. (We have absolutely no doubt it is PANDAS---she had a rheumatic fever type illness as well.) After the first couple of days, we thought her mood was a bit brighter, but that really hasn't continued, and she is worrying just as much as ever. She is so scared that this means that IVIG won't help her. It scares me too. She was feeling so hopeful, but now not as much. Could we possibly still see some improvement from the prednisone at this point? (She has been feeling PHYSICALLY a bit better with the Prednisone, which is to be expected--a little more energy. She has physical autoimmune issues for which she takes Plaquenil, a lupus drug.)

P

[Fixit]

My 16 year old daughter did a 5 day steroid burst and is on day 16 now, counting from the first day she took it. She is really not seeing benefits in her mental condition. Her PANDAS diagnosis is definite, so we were hoping we'd see something good from the prednisone. (We have absolutely no doubt it is PANDAS---she had a rheumatic fever type illness as well.) After the first couple of days, we thought her mood was a bit brighter, but that really hasn't continued, and she is worrying just as much as ever. She is so scared that this means that IVIG won't help her. It scares me too. She was feeling so hopeful, but now not as much. Could we possibly still see some improvement from the prednisone at this point? (She has been feeling PHYSICALLY a bit better with the Prednisone, which is to be expected--a little more energy. She has physical autoimmune issues for which she takes Plaquenil, a lupus drug.)

 

P

 

On our first burst it took 21 days...doc k says up to 4 weeks...

doing taper...same as you, today is day 6...last couple of days were nice.,better.not great(tics)...... today...vocals up(throat clearing, sneeze sound)...but motors are still better less chaining in that area...... so not sure.....i thought we were seeing earlier resluts this time...might have to wait 21 days??

for us i wonder if like last time..even though we are smarter this go round and added difluacan, that maybe yeast is an issue for the vocals

[Fixit]

lupus,chorea movements..ivig

 

http://www.springerlink.com/content/4k741l1064062429/

 

 

 

 

My 16 year old daughter did a 5 day steroid burst and is on day 16 now, counting from the first day she took it. She is really not seeing benefits in her mental condition. Her PANDAS diagnosis is definite, so we were hoping we'd see something good from the prednisone. (We have absolutely no doubt it is PANDAS---she had a rheumatic fever type illness as well.) After the first couple of days, we thought her mood was a bit brighter, but that really hasn't continued, and she is worrying just as much as ever. She is so scared that this means that IVIG won't help her. It scares me too. She was feeling so hopeful, but now not as much. Could we possibly still see some improvement from the prednisone at this point? (She has been feeling PHYSICALLY a bit better with the Prednisone, which is to be expected--a little more energy. She has physical autoimmune issues for which she takes Plaquenil, a lupus drug.)

P

[MSmom]

Thanks so much for the replies. I'll remain hopeful. She is no better today.

I may have been unclear in the way I wrote my post---We didn't do a taper--just 5 days of prednisone, and she is now on day 18 post prednisone.

Thanks for the interesting link too. These autoimmune things are all so weird and connected.

Hope you are seeing improvement at your house.

 

 

P

 

On our first burst it took 21 days...doc k says up to 4 weeks...

doing taper...same as you, today is day 6...last couple of days were nice.,better.not great(tics)...... today...vocals up(throat clearing, sneeze sound)...but motors are still better less chaining in that area...... so not sure.....i thought we were seeing earlier resluts this time...might have to wait 21 days??

for us i wonder if like last time..even though we are smarter this go round and added difluacan, that maybe yeast is an issue for the vocals