LaurenK Posted January 24, 2012 Report Share Posted January 24, 2012 Does anyones child take rilutek? About how much of a decrease have you seen with it in symptoms? 50% 60%?? Link to comment Share on other sites More sharing options...
PowPow Posted January 24, 2012 Report Share Posted January 24, 2012 My child is on rilutek and has been since Nov, I think. She is on 50mg BID. Hard to ascertain the sucess of this- as she started it about one month post pex, but I do think it is helpful. She tried it once before for about a week (over a year ago) before any IVIG or pex and I think it was helpful- I could not give you a percentage, as she only took it for a few days and then she refused meds (all meds, not just rilutek!) but I think it was showing promise. I think some people have trouble: 1. getting a doc to prescribe it (our psychiatrist did- after she knew that my child had it before- I had originally talked to Dr Grant at NIMH about the Rilutek trial and then begged my PANDAS doc to try it) 2. I think at least one person here was unable to get their insurance to cover it. Link to comment Share on other sites More sharing options...
NancyD Posted January 24, 2012 Report Share Posted January 24, 2012 We tried it for a few months a few years ago and it did not help at all with DD's OCD. When we tried taking her off it very slowly it triggered very severe motor and vocal tics. It took many months and a HD IVIg infusion to finally stop the tics. Does anyones child take rilutek? About how much of a decrease have you seen with it in symptoms? 50% 60%?? Link to comment Share on other sites More sharing options...
Mayzoo Posted January 24, 2012 Report Share Posted January 24, 2012 My daughter was on topamax and has been on baclofen in the past. Both were pre-pandas I believe. Did you have any questions about those two meds? Link to comment Share on other sites More sharing options...
LaurenK Posted January 24, 2012 Author Report Share Posted January 24, 2012 Mayzoo- did those meds help your daughter? Link to comment Share on other sites More sharing options...
Mayzoo Posted January 24, 2012 Report Share Posted January 24, 2012 Mayzoo- did those meds help your daughter? She was on the topamax for headaches and neuropathic pain related to Chiari and yes it helped a great deal. The baclofen was helped with neck spasms. Link to comment Share on other sites More sharing options...
LaurenK Posted January 25, 2012 Author Report Share Posted January 25, 2012 Did it help PANDAS? and to what extent?? Link to comment Share on other sites More sharing options...
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