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zithro working wonders


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Zithro seems to be working miracles for my dd. however I am now so worried that daily use over a long period of time will end up with her body just getting used to it. I think that was part of why augmentin stopped working this year. she has been on that daily for 18 months. For those of you who had antibiotics work at one point, do you wish that you had not used every day. I know some people put their kids back on antibiotics during flare ups, and use high dose etc. Just wondering what your thoughts are. Is it better to use zithro every day and just find another antibiotic when this one stops working. I don't seem to hear of too many people who have had the same antibiotic work for years. but I would love to hear from you if that was the case for you!!!

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chase-

 

I am so glad your daughter is getting relief!

 

Yes to your thoughts.

 

My dd's both have pandas. Both had almost total symptom relief after 30 days of zithromax. My first diagnosed came off zith after a month and went on twice weekly, relapsed within a month due to T&A, and we then put her on daily zith for about 2.5 years. Her sister was diagnosed after this, and had total symptom relief after 30 days, and due to our scary experience with sister, stayed on full strength zith for two years.

 

Later episodes were not helped or avoided by zithromax. Both girls eventually even contracted strep throat while on zith (plus augmentin). Both have normal immune function, and fight off illness well, recover fast. They have only had strep twice in the last three years (and they are cultured at ANY sign of fatigue, ocd, stomach ache, illness, etc).

 

This summer, in frustration of them getting sick on two abx, I started questioning everything we did. I have come to accept that it is NOT possible to keep someone from getting sick. It is probably NOT a healthy idea to try. So I took them off of EVERYTHING. They did great!

 

I will admit, I have them on zith twice weekly now, since school started- because I am a chicken, I guess I want to hedge my bets a little- but my "grand" plan is to get off of abx.

 

I am VERY afraid of unintended consequences. I have gotten older and somewhat more cautious in the last three years.

 

In a perfect world, I would suggest staying on full strength antibiotics for two months. Then, I would slowly wean her off of the antibiotics. If I saw any symptoms increase, I might give it a few days to ride it out. If symptoms spike uncomfortably, or for more than a few days- I might abort the weaning, and try again after another 30 days. Some kids seem to be "antibiotic dependent"- I don't think that was ever the case for mine- and some others- so hopefully you will be lucky. At that point you can decide with your doc whether to keep her on prophylaxis.

 

I think the KEY to pandas is not to prevent illness (because that is not realistic or healthy), but to be ready to immediately react to the pandas itself. Our new protocol is: treating any illness, if they get strep treating with a course of clindamycin, if we see any symptoms flare go to 5 days of full strength zith plus regular advil dosing. If this doesn't take care of it, we move quickly to a steroid burst. The last one we did for my 40-45lb daughter was 40 mg/day X 3 days, 20 mg/day X 2 days.

 

So far so good.

 

We do keep up probiotics and vitamin D (500mg/day) for both no matter what.

 

Disclaimer :) I try not to bother with lots of bloodwork anymore- but my kids have been tested for EVERYTHING. Most of it comes back normal. If I had any concerns of illness, I would be less inclined to do the steroids as easily. As it has gone, both have seemed to need steroids twice during the school year. For them to have a normal life, I can live with that, especially if that means being off of long term antibiotics. The important thing is having a doc at the ready to write the Rx as soon as you need it.

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