interested in your steroid stories

[KaraM]

My dd8 is still suffering an exacerbation - we think due to exposure. There is no evidence of an infection with her. We think her immune system is in overdrive. Her OCD is pretty bad right now.

 

So, we're debating steroids - haven't done them before. Can those of you who have tried let me know whether you've had positive or negative results and how quickly you've seen them. Also, how long of a taper did you do?

 

Thanks,

Kara

 

 

[Guest pandas16]

My dd8 is still suffering an exacerbation - we think due to exposure. There is no evidence of an infection with her. We think her immune system is in overdrive. Her OCD is pretty bad right now.

 

So, we're debating steroids - haven't done them before. Can those of you who have tried let me know whether you've had positive or negative results and how quickly you've seen them. Also, how long of a taper did you do?

 

Thanks,

Kara

 

 

I had 30mg/kg in 1988- I stayed well for 12 years no further flare ups. I just recently had a flare up due to mycoplasma and plan on getting them again. I had a very severe case in 98- I was 100% within a month.

[eljomom]

pandas16---how long were you having symptoms prior to steroids? also, did you have any tics?

 

My dd8 is still suffering an exacerbation - we think due to exposure. There is no evidence of an infection with her. We think her immune system is in overdrive. Her OCD is pretty bad right now.

 

So, we're debating steroids - haven't done them before. Can those of you who have tried let me know whether you've had positive or negative results and how quickly you've seen them. Also, how long of a taper did you do?

 

Thanks,

Kara

 

 

I had 30mg/kg in 1988- I stayed well for 12 years no further flare ups. I just recently had a flare up due to mycoplasma and plan on getting them again. I had a very severe case in 98- I was 100% within a month.

[Bill]

My dd8 is still suffering an exacerbation - we think due to exposure. There is no evidence of an infection with her. We think her immune system is in overdrive. Her OCD is pretty bad right now.

 

So, we're debating steroids - haven't done them before. Can those of you who have tried let me know whether you've had positive or negative results and how quickly you've seen them. Also, how long of a taper did you do?

 

Thanks,

Kara

 

I'm afraid my response may not help you much but....

 

A steroid taper was tried with my son and we saw no effect. I think total time was 7-10 days but do not remember. My son was diagnosed with PANDAS but has since tested positive for Lyme and bartonella with babesia suspected.

 

bill

[Guest pandas16]

Body Tics/Ocd/ ADHD/ ODD EVERYTHING. I had steroids 3 days in and out no taper. Had to go to rheumatology though in order to get it.

 

 

 

pandas16---how long were you having symptoms prior to steroids? also, did you have any tics?

 

My dd8 is still suffering an exacerbation - we think due to exposure. There is no evidence of an infection with her. We think her immune system is in overdrive. Her OCD is pretty bad right now.

 

So, we're debating steroids - haven't done them before. Can those of you who have tried let me know whether you've had positive or negative results and how quickly you've seen them. Also, how long of a taper did you do?

 

Thanks,

Kara

 

 

I had 30mg/kg in 1988- I stayed well for 12 years no further flare ups. I just recently had a flare up due to mycoplasma and plan on getting them again. I had a very severe case in 98- I was 100% within a month.

[PhillyPA]

I have two boys with pandas. Highly recommend the steroids taper. We did 30 days. One son totally put in remission with antibiotics and steroid taper. My other son greatly improves on steroids.

[Kayanne]

My daughter has taken monthly steroid tapers twice in response to actual infection and/or exposure to strep. The first time we saw improvement throughout the month, but were still worried, and at the very end, she improved very dramatically. So much, that we kept her on that dose (5mg daily) for another 2 weeks to be sure we were fully addressing any inflammation.

 

The second time, it was caught earlier, and by the end of the second week, she was 100% - we still finished the taper.

Edited February 3, 2011 by Kayanne

[adkmom]

Kara,

 

Our ds4 recently finished 2 week prednisone taper (40mg daily to start). The hyperactivity went up and there was still some aggression and meltdowns but the OCD and tics disappeared within days. It's been 2 weeks since we stopped and he's still doing well. (All this despite the fact we later found out he is positive for Lyme, so steroids should have made things worse...but they didn't) His OCD was mild though. But he was very fearful and that has cleared 98%.

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[T_Mom]

Older d: Steroids snapped her out of a very severe OCD/ticcing episode -- came back to 85% after 10 days on steroids. She continued to heal for 9 months until she got a second steroid burst (month long) and she came back literally 110%. Best thing we ever did (thus far.) Has continued on long-term full strength antibiotics as well--for well over a year.

 

Younger d: Tried steroid bursts twice in the last 2 years and both times minimal (but some) improvement.

 

(Always tapered the steroids.)