Doug Posted July 27, 2010 Report Share Posted July 27, 2010 Ok we are hitting the 6 month post ivig mark and our dd is doing AWESOME.. so my Question is for everyone that has been to Dr.k What happens after a year?? does he keep you on abx's say 3 times a week?? I will email him at some point and ask but I just wanted to toss that out to our PANDAS family to see what you all think. Tracie Link to comment Share on other sites More sharing options...
bmom Posted July 27, 2010 Report Share Posted July 27, 2010 Ok we are hitting the 6 month post ivig mark and our dd is doing AWESOME.. so my Question is for everyone that has been to Dr.k What happens after a year?? does he keep you on abx's say 3 times a week?? I will email him at some point and ask but I just wanted to toss that out to our PANDAS family to see what you all think. Tracie Dr. K did take my son off all antibiotics at the one year mark. It did not work for him and we are doing IVIG number 2 soon. We did get him on antibiotics after the one year, but it was zithro which did not work as well as the Augmentin for my son and he has gotten worse. He is currently back on Augmentin, but we have not gotten him as good as before. If things are well at the one year mark, I would not back off! Link to comment Share on other sites More sharing options...
mama2alex Posted July 27, 2010 Report Share Posted July 27, 2010 I don't really understand the reasoning behind taking them off antibiotics after a year. Our friend had Rheumatic Fever when he was 3 and was given very high doses of antibiotics, followed by continuous antibiotics for the remainder of his childhood. Why wouldn't it be the same with PANDAS? I respect Dr. K tremendously, but I have to say this doesn't make sense to me. Link to comment Share on other sites More sharing options...
tpotter Posted July 27, 2010 Report Share Posted July 27, 2010 Dr. L. keeps the kids on abx until at least early adulthood. Link to comment Share on other sites More sharing options...
EAMom Posted July 28, 2010 Report Share Posted July 28, 2010 I completely agree with you mama2alex! Link to comment Share on other sites More sharing options...
Worried_Dad Posted July 28, 2010 Report Share Posted July 28, 2010 Ditto! After our experience with augmentin XR over the past 10 months, I'm frankly terrified at the thought of ramping down or eliminating the abx. Our son's finally got his life back - can't contemplate things sliding back into the PANDAS abyss.... I completely agree with you mama2alex! Link to comment Share on other sites More sharing options...
T_Mom Posted July 28, 2010 Report Share Posted July 28, 2010 (edited) Ok we are hitting the 6 month post ivig mark and our dd is doing AWESOME.. so my Question is for everyone that has been to Dr.k What happens after a year?? does he keep you on abx's say 3 times a week?? I will email him at some point and ask but I just wanted to toss that out to our PANDAS family to see what you all think. Tracie Tracie--Do let us know what Dr K says re: abx., I am sure we will all be interested to know. Truly, much is a "try and see" approach -- Certainly that is how we have come so far as a group of parents on this forum. We seem to all wonder what the doctor we are seeing will advise. We then compare, and ultimately "wait and see" what effects a course of treatment has on our children. We are writing the testimonial while we live the reality of PANDAS and the outcome is happening along the way-- I hope someone knows more in 10 years, maybe in two, but right now so much of it is a "wait and see" how a treatment (or the cessation of a treatment) will affect our child--and the outcomes seem to differ. One thing we seem to know for sure though--antibiotics, immunomodulating therapies, and anti-inflammatory steroids hold hope. It is a good place to be if you can find a doctor who is willing to TREAT accordingly-- Edited July 28, 2010 by T.Mom Link to comment Share on other sites More sharing options...
sf_mom Posted July 28, 2010 Report Share Posted July 28, 2010 Agreed!! Our son has been on antibiotics for one year and he is over six months post his last IVIG treatment. I understand from Diana P. that she asked one of the Dr.'s at the NIMH meeting a couple of weeks ago and his response was 250 m.g. azithromycin every other day for RF. She didn't mention how long though. From all the papers I've read about RF the recommendation is 5 years or adolescence which ever is longer with no heart involvement. If there is heart involvement a lifetime. We are following a 'Lyme Like' protocol with regard to antibiotics and will start to lower once he has had three months at 100%. I then intend to lower very slowly over a long period of time.... Perhaps after puberty or more knowledge gained regarding PANDAS/Pitands. -Wendy Link to comment Share on other sites More sharing options...
Doug Posted July 28, 2010 Author Report Share Posted July 28, 2010 Thanks everyone I will Let Doug email him he has a better way with words then I do.. Dr.K wont tell us now I dont think, so we will need to bring it up in a couple of months to him and then see what he thinks. Tracie Link to comment Share on other sites More sharing options...
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