Tattoomom Posted May 24, 2013 Report Share Posted May 24, 2013 My 4 year old (severe PANDAS) did a steroid taper between February-March. She did wonderful and I truly believe the Prednisone was the boost she needed. We also stopped the daily Augmentin and started daily Zithromax. Her Pediatrician wants to go from daily Zith to a prophylaxis dose and suggested 3 x's a week. Is this enough? Also, is it better to do 3 days straight? Like, Mon, Tues, Wed? Or separate the doses? Like, Monday, Wed, Fri? I know Zith suppposedly keeps working after a dose, so I'm thinking spreading it out might be the better option?? Truthfully, I'm afraid it's not enough to prevent strep. Link to comment Share on other sites More sharing options...
blakes_mom Posted May 24, 2013 Report Share Posted May 24, 2013 My son 60 lbs has been on zithromax 250 M, W, and F for 2 years. He has not had strep during this time. Link to comment Share on other sites More sharing options...
JPdad Posted May 24, 2013 Report Share Posted May 24, 2013 We had no luck with zithromax 3x a week. I guess the theory is that it has a longer half life (60 hours or something) and a single does is supposed to keep you protected for a few days. For whatever reason DS kept getting ear infections and exacerbations. Once we went to daily augmentin he was able to stay infection free. Link to comment Share on other sites More sharing options...
Tattoomom Posted May 28, 2013 Author Report Share Posted May 28, 2013 I'm nervous about cutting back on her Zithromax. She's come leaps and bounds and I worry that decreasing her doses might set us back. What to do?? Pediatrician would like to see her go down to 3 days a week, but I think she will work with me if I ask to keep her on. Ahhhhh! Decisions!! What are most kids on? Everyday?? Link to comment Share on other sites More sharing options...
Mayzoo Posted May 28, 2013 Report Share Posted May 28, 2013 My kiddo is 62 lbs and her immuno just bumped her up to 375mg every day (from 125mg every day). The immuno said he may want to bump her up to 500mg, but I will have to look that up as it seems like a pretty high dose for her weight. She also takes cephalexin 500mg every other day. She is no where near where she needs to be right now, but a year ago she was on zithromax 250mg every day and almost reached 95%. Then she was changed to something else, and changed again and again. We went back to zithromax in Feb. but at a pretty low dose, started at 125mg every other day. Link to comment Share on other sites More sharing options...
airial95 Posted May 28, 2013 Report Share Posted May 28, 2013 My son (5yo 36 lbs) is in 250 mg zith 1x/day and 500 mg augment in 2x/day. We just finished 90 days of rifampin as a boost to respond to recent infection. Every time we have tried to lower his abx over the past 3 years he has regressed. Link to comment Share on other sites More sharing options...
Tattoomom Posted May 29, 2013 Author Report Share Posted May 29, 2013 My son (5yo 36 lbs) is in 250 mg zith 1x/day and 500 mg augment in 2x/day. We just finished 90 days of rifampin as a boost to respond to recent infection. Every time we have tried to lower his abx over the past 3 years he has regressed. Who do you see in Tampa? Link to comment Share on other sites More sharing options...
airial95 Posted May 29, 2013 Report Share Posted May 29, 2013 We have a phenomenal pediatrician that is our primary go-to guy named Dr. Friedmeyer. We have also been to Rothman and seen Dr. B in CT for IVIG. I just noticed that you're in JAX, if you're on facebook, there is a Florida group at www.facebook.com/groups/FloridaPANDAS if you're interested. I think there are others from JAX on there as well. Tattoomom 1 Link to comment Share on other sites More sharing options...
4Nikki Posted May 29, 2013 Report Share Posted May 29, 2013 I just read "You should not use Zithromax if you have ever had jaundice or liver problems caused by taking azithromycin." What is in it that would have a problem with past history of jandice? Or what does jandice leave behind? Link to comment Share on other sites More sharing options...
EAMom Posted May 29, 2013 Report Share Posted May 29, 2013 My dd takes 250mg/day Azith (started this dose at 7.5 years, 43 pounds). Link to comment Share on other sites More sharing options...
Tattoomom Posted June 15, 2013 Author Report Share Posted June 15, 2013 So, this past week was our first week trying to go from daily Zith (since September) to M,W,F dosing. She was fine until last night. She started complaining that her throat was killing her and she was slightly warm. She was due for her Friday dose anyway. I gave her some Advil and Zith before bed. She woke up this morning with OCD, rage and agitation that we haven't seen in months. OMG. Does this mean she cannot handle anything less than once per day? Link to comment Share on other sites More sharing options...
Tattoomom Posted June 15, 2013 Author Report Share Posted June 15, 2013 My dd takes 250mg/day Azith (started this dose at 7.5 years, 43 pounds). How long has she been on it daily? Link to comment Share on other sites More sharing options...
EAMom Posted June 18, 2013 Report Share Posted June 18, 2013 (edited) Hi Tattoomom, she started at that dose in 2008, just over 5 years ago.. She'll be 13 in July. Actually a couple of months ago I switched her to 500mg Azith. every M, W, F. (We could go up to 500mg every day if there is a flare.) The every other day makes it easier for me to give probiotics etc. on the off days. Edited June 18, 2013 by EAMom Link to comment Share on other sites More sharing options...
Tattoomom Posted June 24, 2013 Author Report Share Posted June 24, 2013 Here we are over a week later and she's still a mess. We have a new symptom. Depression. Well, she's only 4, so maybe she was depressed before and is just now mature enough to put words to it, but she's sobbing at the drop of a hat and is saying things like, "I hate my life!" over everything. It's terrible Link to comment Share on other sites More sharing options...
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