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Antibiotics: daily, weekly, or only for flare ups?


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Most of you know my story- two kids with pandas, yada, yada. We are about three years in, and as always I am working on fine tuning our protocol, and am collecting my ideas prior to doc appt.

 

Currently, I am debating whether I should keep my kids on their prophylactic dose of zithromax (twice weekly), or take them off completely. So far, they have not proven to be antibiotic dependent. They also do not seem to get sick frequently, and the antibiotics have not proven to reduce their infections when compared to life prior to pandas.

 

So- I am wondering if any/ many here ONLY do antibiotics for pandas flare-ups or illness, and NOT prophylactically.

 

Thx!

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We will be daily until at least age 18.

 

There are probably many out there that aren't daily, but that isn't really by choice (it's b/c their docs won't rx it daily).

 

It's all risk analysis really. There are people that don't use bike helmets or wear seatbelts, and they might be fine (for a while at least). And there are others that DO wear seatbelts and bike helmets, and they STILL get hit by that drunk driver. But, these things (seatbelts, bike helmets, long term anti-biotics for PANDAS kids) are stacking things in your favor in case something bad does happen.

 

For us, treating with abs, AFTER an infection, would be a bit like closing the barn door after the horse is already out...too little too late. But, also, that is our judgement call, and our dd's PANDAS was severe...so I can't really speak for every one else.

 

You might also contact Browneyesmom ...she was doing abs as needed, and now her dd is in a bad place (even though she had multiple IVIG's in 2011.)

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Our doc took 2 of our 3 girls off abx. The remaining one is on 250mg Zithro daily.

Do not know why this is the case. In your case, with what you have seen evidenced by what helps, I would drop them.

 

When our youngest has had flares- she has been put zithro & steroids twice and after a month she gets better and stays off. Last time was in Sept 2011.

For a flare after pex for our oldest, she did the clindamycin/rifampin protocol and then when that was over- no other abx. Of course, she is not doing so great, but the abx really did not noticeably make a difference.

I would give their bodies a rest and see what happens!

Easy for me to say - I do not have to live with them ^_^

Edited by PowPow
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After 2 years of use, we were given the green light by ped to stop prophylactics at ds9's last well visit (sep). Interesting that as reluctant as we were to start daily abx, we became reluctant to then stop, especially with strep season approaching. We ended up waiting until winter break to stop, so we could keep him somewhat isolated from school and have a little control over his exposures. Happy to say there was no evident flare up post abx and ds9 is continuing to improve as previously, less and less symptomatic with each flare. Have not used abx for flare ups as they are minor and end so quickly now.

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We're still doing daily 1/2 dose of Ominicef (150mg). She's had some direct exposure with a teacher in school in the beginning of the year, and we didn't see any significant symptoms. I'll keep her on it for as long as Dr. L thinks it's needed and as long as I don't see any yeast issues.

 

Although, I am considering giving her a break for about a month in the summer after her day-camp ends but I wanted to discuss that with Dr. L when we see her next.

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Eileen --

 

We did daily for just over 2 years; as we weaned, we got down to an every-other-day schedule for a few weeks, and now we've been completely off since early December 2011.

 

Our daily abx was "treatment" dose, so other than the weaning period, we've never done anything by way of a prophylactic dose.

 

The plan now is to treat only flare-ups with a full-strength response, hopefully something like a 10-day course, just as you would for a typical strep infection.

 

I personally think, though, that age may play into this. At almost 15, my DS is in high school and probably slightly less subject to rounds of strep that find their way into elementary and even junior high schools. I also like to think (wishful?) that his immune system is a little more mature and thus might respond more appropriately now than it would've when he was younger.

 

I will admit, however, that we do give him olive leaf "prophylactically," twice a day. ;)

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I've been thinking the same thing - is there a point where we try to wean our son off antibiotics? Right now he's on a daily dose of 1000 mg Augmentin XR. I just increased to 1500 mg because we had a major uptick yesterday - not quite sure where that's headed. That's been our routine for almost two years now. We also treat with homeopathic remedies and our homeopath wants us to stop the antibiotics to let the remedies truly work...not sure I'm there yet. I have seen a major difference in terms of how often my son gets sick though. He typically would have several bouts of ear infections and strep in the course of a year - so far we've had some minor upticks and one major episode after diagnosis - so I'm inclined to keep him on for now.

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Daily for both our PANDAS kids. My opinion is they will remain on proph abx after teens, like 20 or 21. Especially for our DS, who has experienced harsher symptoms. I had SC and was on proph abx from age 7 to 20, and no ill effects. So, I am all for it.

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Hi - both my PANS kids react to many different triggers. Our proph abx, zith, didn't appear to make any difference in how many infections or flares they got.

 

DD got serum sickness a couple of years back and it frightened dh so much that he wanted us to try no proph abx. I was ready to give it a go anyway and with ds having had c diff and also being a yeasty kid it wasn't too much of a leap of faith for me.

 

Dd is doing better but that's due to many factors (mainly methylation support we think) and ds is rollling along with many ups and downs but we're coping ok

 

We do abx for obviously bacterial flares but we don't abx all of them eg colds/viral. I feel for us it was the right decision and seems to be panning out ok so far....

 

 

hard decision, though.... good luck..

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DcMom...

 

It really boils down to what you are willing to risk. Possible ill effects from abx or A bad PANDAS flair? You and I are in the same boat....2 PANDAS kids the same age and both doing well. I think often of taking my older son off, but, it would be against docs advice and when I think about it.......neither son has had any ill effects from the abx BUT the PANDAS was AWFUL!!!...particularly for younger son. We are almost 5 years out and both boys are doing better than ever...it took us this long post strep to get here. I don't ever want either son to go back to that "place." I also know that my younger son is very well aware of what happened...and HE doesn't ever want to go there again. I think if I took him off and subject him to the possibility of going there again(and I know abx are not 100% protective...but, they have worked for 5 years) ....he would be very upset! He would surely want to swallow a pill every morning as oppossed to becoming mentally ill....he understands why he takes it...and has never once complained about it. He is young and is dependent on me to protect him from that as best I can........so, for us, they will both stay on. They will stay on until I am convinced, as well as their doc, that they will be okay. Will that ever happen? I hope so. I also think they should have a say in it...right now they are too young to choose wisely.....when they are older, they will have a better understanding. Think of what you went through with PANDAS...the treatments, etc. Now, think of the trials you have had with abx...that is what I, personally, would base my decision on. (I have also noticed that the kids that fair the best are the ones that had stayed on proph. abx until they were much older than our kids...also, symptom severity is something to consider, however, if each episode is supposed to be worse than the last... is that really a good indicator?)

Edited by P.Mom
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Thanks everyone for the thoughtful replies! I read through quickly, and will re read tomorrow morning. I am going to pandas support group tonight, so will discuss there as well.

 

A year ago I would have NEVER considered going off the abx. We did full strength, daily zith for both girls for over 2 years.

 

But last April, the biggest fear happened. Both girls caught strep, even while on multiple abx. We caught it right away and treated with clinda. They both went into an episode- but you know what- we responded quickly with steroids- and avoided the worst. Within less than a month after starting steroids, they were back to 100%. So I started thinking, why the abx? Why not respond quickly to the pandas only?

 

So we stopped for the summer, and all was well. Now we are on twice weekly.

 

I no longer believe I can/ nor do I want to keep them from ever getting sick. We react to viruses as well a strep, so strep doesn't stand out as my sole fear.

 

I do wonder if we are benefitting (as a recent doc stated) from some immunomodulation properties from the zith. That would be a reason to stay on, but, are there other meds out there that can do the same or better.

 

IDK. I plan to discuss with Dr T. The thing is, I know the docs treating this now don't have long term enough experience to give me a really credible answer.

 

At this point, I think I will keep them on 2x per week until June- then consider taking the summer off.

 

I welcome more comments :)

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DcMom...

 

Another thing I thought of that you may want to consider. I remember reading in Swedo's publication of the first 50 cases of PANDAS that the kids who did get breakthrough strep while on proph. antibiotics showed a "blunting of titers." (if I remember correctly) So, I am thinking the abx, although did not prevent strep, helped keep the immune response down. Could the reason your girls recovered so well after strep while on multiple abx be because they were on the abx?

 

I know......never a solid answer with this stuff. :(

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