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For those using prophylactic ABX less than daily


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My daughter has been on some form of daily ABX for over 2 yrs. now and dare I say, symptom free for the last 5 months or so. It took a combination of Bactrim and Zithromax to get her to 100%, which has not happened since onset in 2008. She is now down to a half of Bactrim daily. Recommendation is to try her off all abx come June, as long as she remains symptom free. My idea would be to try a weekly or bi weekly abx as a sort of wean. I'm so afraid to go "cold turkey" after all these years. I realize a half of Bactrim isn't much, but there's a security on giving daily. Any ideas for what to ask for on a less than daily basis as a trial to decide if eliminating all prophylaxis is really going to work.

 

Thanks,

Amy

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My daughter's "regular" prophylaxis is zithromax, 500mg every other day, starting w/ a 3 days straight loading dose. Zith has a long half life so I feel okay w/ this. But, we seem to have something that just hangs on and we still get flares. We use clinda for flares or sometimes something else. Whenever I try to stop prophylaxis, we get an immediate flare.

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Amy-

 

I have stopped antibiotics altogether for my 11 yr old, and am down to 2 days per week of zith for my 8 yr old.

 

Both were on daily zith since diagnosis, for a total of about two years. Last year, while they were both on zith plus augmentin, they contracted strep! This made me come to terms with the fact that we absolutely cannot keep them from getting sick. We treated the strep with clindamycin, and followed up with IV steroids. We avoided disaster. This experience made me really question why we were doing the antibiotics, and if the "reward" for antibiotics were still worth the "risk". What if we could be off antibiotics (in a perfect world this is obviously the healthy choice) and respond fast to pandas flare ups?

 

Last summer, fed up with all the pills, I took them off of everything. Not only did they not backslide, they flourished! The only pills they took for the summer were probiotics.

 

This fall, I was a little "chicken", so I put them on zith 2x per week. So far this school year (fingers crossed) they both have had 2 viral colds, and that is it. Two months ago, I took the older one off all antibiotics (due to some concerns it was bothering her stomach), and I have to say she has been doing really, really well.

 

Now, if we see any increase in pandas issues, we give them daily zith plus regular advil dosing for 5 days. I cannot be sure that it has worked, but, we have used this protocol probably 3x with each kid, and each time they have gotten better (would they have gotten better w/o this protocol- that is what I do not know).

 

Right now my younger one is mildly symptomatic :( She just got over a cold, and now my husband and I both have a bad cold. So she is obviously reacting. I will put her on the zith/advil protocol and hope things get better. If they do not, we will do a steroid burst. When she is better, she will probably come off of all antibiotics.

 

In some ways I think that if the kids do well off of the antibiotics, then maybe their body is not used the antibiotics, and they can be more effective (as an immune modulator anyway) when used.

 

Just my 2 cents. But, this has been the best year since their diagnosis, and it is also the year they have been on the least antibiotics.

 

Good luck with your choice- I know it is not easy!

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Thanks for everyone's input. DC mom....this is exactly what we were thinking, in terms of treating any flare ups quickly and trying to treat episodically. We have a Pediatrician on board whose open to whatever we ask for, and have decided to take a break from our bi monthly apps with Dr. B. We saw Dr. Elia at CHOP in December and she thought we should try coming off the antibiotics in the summer and with any flare up, resume. Dr. B seemed to be leaning toward the same plan. I like the idea of Zith. A few times weekly and will talk to my ped. About that.

As always, my daughter would not be where she is today without the knowledge and wisdom that has come from the years of advice from others on this site. I am so thankful to all of you for that!

 

Amy

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AmySLP---were you strep-only??? NIH recommends proph. abx till adult age if history of rheumatic fever....not sure why pandas would be any different.

My daughter started a s a clear cut strep case with mono in the midst at age of 4. She had strep for nearly 6 months that was recurrent until a covering doc. Put her on clindamycin (he's our reg pediatrician now!) this dose of clindamycin took care of the strep and most of the PANDAS symptoms and then we saw Dr. Latimer a month later who dx the PANDAS and put her on zith. She was doing well so we took her off after a couple of months and she was good for about 10 months until she got strep again and the PANDAS symptoms came back with a vengeance! We then saw Dr.B and have followed with him since. We did find some evidence of borderline positive bartonella and erlichia co infections, but the numbers were borderline, just not compelling enough for us to see the Lyme specialist. Although my daughter did eliminate all residual symptoms with Bactrim and zith combo, so who knows if those co infections may have played a role. I always say the one thing I know for sure is that this all started with strep. We seem to have a positive family history of PANDAS as well.

 

Amy

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Amy

 

I just want to comment that Azithro/Bactrim combo is fantastic for Bartonella and could have easily put her symptoms into full remission and taken care of the Ehrlichiosis. You might also want to recheck for Lyme to see if she now has converted results and shows positive. Sometimes that happens when the co-infections are dealt with properly the Lyme test results convert over. If you take her off antibiotics 'lower antibiotics' and she regresses in a short period of time (within 1 to 2 weeks you see creeping symptoms) it can be an indication the Bartonella is still there. Additionally, if Lyme was there originally it could easily be in cyst form and might take much, much longer to see relapsing symptoms if the Bartonella and Ehrlichiosis is gone.

 

I've been posting about the new Lyme Culture and if you take her completely off antibiotics, its another resource for testing if symptoms re-emerge. She must be off antibiotics completely for 4 weeks to test.

 

Good Luck.

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