lfran Posted January 28, 2013 Report Share Posted January 28, 2013 I think we are about to start valtrex, due to some very high antibody levels on a couple of typical PANS viruses. It's pretty expensive (almost $200). Side effects sound scary. DS11 is MTHFR C677T homozygous. Doing pretty well, but would love to get to 95% or 100% ) Can anyone post (or repost, cause I know there was a discussion a while ago) about Valtrex experiences. Thanks! Link to comment Share on other sites More sharing options...
T_Anna Posted January 28, 2013 Report Share Posted January 28, 2013 We did Valtrex and DS didn't seem to have side effects. It did seem to lower the cox sackie numbers. T.Anna Link to comment Share on other sites More sharing options...
cobbiemommy Posted January 28, 2013 Report Share Posted January 28, 2013 We did Valtrex with no side effects, but no great gains. Did ten days of Valtrex. Link to comment Share on other sites More sharing options...
mdmom Posted January 28, 2013 Report Share Posted January 28, 2013 My son has been on Valtrex for about 14 months. He has made huge gains on it. I've said this many times before, so forgive me for repeating myself - but he calls it the "magic blue pill." He himself could notice a difference in how he felt emotionally and physically after 1 month on it. He took (2) 1gm pills/day for 1 year and we recently dropped to a maintenance dose of 1 pill/day. My DD13, DH and I have all taken it long-term with no noticeable side effects. Link to comment Share on other sites More sharing options...
lfran Posted February 1, 2013 Author Report Share Posted February 1, 2013 Just wondering if others can chime in with dosages and kids' weights. Thanks! My son has been on Valtrex for about 14 months. He has made huge gains on it. I've said this many times before, so forgive me for repeating myself - but he calls it the "magic blue pill." He himself could notice a difference in how he felt emotionally and physically after 1 month on it. He took (2) 1gm pills/day for 1 year and we recently dropped to a maintenance dose of 1 pill/day. My DD13, DH and I have all taken it long-term with no noticeable side effects. Link to comment Share on other sites More sharing options...
3boysmom Posted February 1, 2013 Report Share Posted February 1, 2013 Our 13 year old weighs 130 and takes 1 gm in the am and 1 in the pm. We are on day 14 of a 20 day script with no side effects. Tics are still bad but no longer debilitating. Link to comment Share on other sites More sharing options...
mdmom Posted February 1, 2013 Report Share Posted February 1, 2013 DS15 is 6'2" and 130 lbs and has taken 1 gm at breakfast and 1 gm at dinner. He now takes a maintenance dose of 1 gm at breakfast. DD13 is 5'5" and 160 lbs. and takes 1 gm twice daily. They have both also taken IV acyclovir (equivalent to oral Valtrex) for many months (alternating between oral and IV throughout the week) with no problems. Link to comment Share on other sites More sharing options...
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