T_Anna Posted June 19, 2013 Report Share Posted June 19, 2013 Anyone have any experience with IV steroids? T.Anna DS15 Link to comment Share on other sites More sharing options...
dcmom Posted June 19, 2013 Report Share Posted June 19, 2013 Yes- they worked very well for us. Link to comment Share on other sites More sharing options...
PowPow Posted June 19, 2013 Report Share Posted June 19, 2013 Yes. Same here. Link to comment Share on other sites More sharing options...
T_Anna Posted June 19, 2013 Author Report Share Posted June 19, 2013 Dr. T said that would probably be the easiest/fastest thing we can try. Do you think it would help "unstick" DS? How did you get to the IV Steroids? I saw that Susannah Cahalan in Brain on Fire was also treated with a lot of IV steroids. T. Anna Link to comment Share on other sites More sharing options...
dcmom Posted June 19, 2013 Report Share Posted June 19, 2013 We had them first in a hospital, then through Dr T, at home. They worked well for my kids, who both respond well to immune suppressing treatments. We used both times for both girls, each time it stopped the downward spiral they were in, and put them on a healing path. The recovery was not overnight, but they started improvement daily a few days out from the infusion. I will say that if you are looking to "unstick" ocd- my opinion is that excellent ERP therapy (ie USF program) is needed in conjunction with medical treatment, much of the time. Especially for particularly "stuck" ocd. Link to comment Share on other sites More sharing options...
T_Anna Posted June 19, 2013 Author Report Share Posted June 19, 2013 I have spoken with Dr. Storch a few times. He really stressed that DS needs to be at a more receptive/functional point to yield any results from ERP. I tend to agree that DS probably wont believe he can get over this until he feels a little better. He was great with CBT before we realized that we were beginning to sink into an exacerbation (or what that even meant). Did your daughters do any IVIGs? Thanks, T.Anna Link to comment Share on other sites More sharing options...
dcmom Posted June 19, 2013 Report Share Posted June 19, 2013 We didn't do IVIGs. Both girls have done pex, and later/ separate exacerbations, IV steroids. I will say, you should have someone in place for ERP. Your son may need someone to coax him to work on the ocd, but it should be easier with the immune treatment. Has he had a positive response to oral steroids previously? Link to comment Share on other sites More sharing options...
T_Anna Posted June 19, 2013 Author Report Share Posted June 19, 2013 Yes, but it was so long ago that I don't really remember specifics-i'll have to look at my notes. I only remember that we were enthused enough with the burst to go ahead with the taper. We stopped the taper with a week left as he was complaining a ton that his stomach was burning. T.Anna Link to comment Share on other sites More sharing options...
LaurenK Posted June 20, 2013 Report Share Posted June 20, 2013 Dr Najaar gives me IV steroids, 3000 mg pulsed over 3 days- puts me in remission within a month. Lasts about 6 months. Link to comment Share on other sites More sharing options...
PowPow Posted June 21, 2013 Report Share Posted June 21, 2013 (edited) Lauren k, how many times have you done this? This was also my daughters protocol. Well, she was 2g over 2 days- but she is a young teenager. What are you doing to prevent relapse? Does he think this is a chronic illness, needing repetitive tx or that eventually it will remit completely? Edited June 21, 2013 by PowPow Link to comment Share on other sites More sharing options...
T_Anna Posted June 21, 2013 Author Report Share Posted June 21, 2013 Someone told me that sometimes there are bad rebounds with the high dose steroids...anyone hear this? T.Anna DS15 Link to comment Share on other sites More sharing options...
PowPow Posted June 21, 2013 Report Share Posted June 21, 2013 No rebounds here. Link to comment Share on other sites More sharing options...
vanessatvann Posted September 2, 2013 Report Share Posted September 2, 2013 I did IV Steriods for PANDAS - it worked well for about 3 days and then had severe relapse, OCD symptoms extreme Link to comment Share on other sites More sharing options...
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