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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.

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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.

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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??

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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.

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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.

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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?

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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.

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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?

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  • 3 weeks later...

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?

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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 by EAMom
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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 :(

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