has anyone had no improvement after steroids?

[anneca]

My son, age 11, who was recently diagnosed with PANDAS (though i believe he has had it for 5-6 years), did 7 days of steroids a few weeks ago, after having a phone consult with dr. K. I was expecting some type of change but i have seen nothing, except if anything a slight increase in tics. My son is also on 125 mg of zoloft and i'm wondering if this could blunt the observable effect of steroids.

 

Anyone else out who had no luck with steroids? Thanks.

[butterflymom]

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Edited February 3, 2016 by butterflymom

[lynn]

DS had 20 days of steroids and no improvement. He did get a URI during the course, however, so that may have affected his response. In addition, I didn't then realize how much steroids increased yeast and gut problems. But we didn't have the marvelous improvement that many get.

[SSS]

Ditto on the steroid increasing yeast and gut problems....our 4 day burst, then a trial of Augementin SR, then IVIG with a steroid in it both days, coupled by me giving way too much ibuprofen---daily Azith., and trying to hydrate her with too many juice drinks, has done a number on her gut. :-( She barely ate for awhile, and has lost weight. We've now pulled her off everything except Cephalexin (suppose to be easier on tummy) and a probiotic 2x a day. Gave up ibuprofen entirely.

We had a weak gut to begin with, and when it gets out of whack, obviously she is not feeling good, it can affect the overall picture, for sure, in this house.

Edited March 9, 2011 by S & S

[amyjoy]

i do not believe that the zoloft would affect the outcome or the effects of a steroid burst.

the purpose of the burst is to knock out the inflammation of the basal ganglia, which, in PANDAS, is the source of the symptoms. so theoretically it would knock the symptoms way down if the child has pandas.

i think the treatment window for seeing measureable affects from the burst is up to 21 days. How long has it been? Did you discuss this with Dr. K?

[KaraM]

We did a 21 day tapered burst for my dd8. She did not improve during that time. Since we've stopped she's deteriorated even more.

Dr. B. said he thought that the reason she did not respond was that there is still an infection her immune system is responding to - either in her or in someone in the family (we suspect her brother). So he ordered more test. We are waiting for results still.

 

My son, age 11, who was recently diagnosed with PANDAS (though i believe he has had it for 5-6 years), did 7 days of steroids a few weeks ago, after having a phone consult with dr. K. I was expecting some type of change but i have seen nothing, except if anything a slight increase in tics. My son is also on 125 mg of zoloft and i'm wondering if this could blunt the observable effect of steroids.

 

Anyone else out who had no luck with steroids? Thanks.