Have you ever tried weaning off antibiotics?

[MamaOnAMission]

Have you ever weaned off to see where you were at? Tell of your experience please.

[MomWithOCDSon]

Yes. We tried repeatedly for the first year or so following our PANDAS dx. Actually, to be honest, the first few times we didn't actually "wean" but just took DS off entirely when the prescription ran out. When that didn't work (he'd regress noticeably with respect to behavior by Day 8, like clockwork), we tried actually weaning by trimming the dosage over a few weeks' time. That didn't work either. Again, by Day 8, you knew he no longer had access to something in the abx that was helping him behaviorally.

 

So, in the end, we left the abx in place for nearly 2 years. Then we weaned for the final time, very, very slowly: it took us about 3 months to go from 2,000 mg. XR a day to zero. We saw a behavioral blip or two, but he recovered himself fairly quickly, and we didn't look back. He's been abx-free for nearly 1.5 years now.

 

To this day, I have no idea whether or not the super-slow weaning was the secret or if, after nearly 2 years, his immune system had finally successfully regulated and/or the last bits of the strep had been successfully eliminated.

[MamaOnAMission]

We're you able to get your child back on the antibiotics and stable again?

[Mayzoo]

We have tried twice in 15 months to ween off to no avail. Her tonsils and adenoids were removed today, and after a few months, we will try to slowly ween again. If that is also to no avail, we will just wait for another 6 months to a year to try again.

[Mayzoo]

We're you able to get your child back on the antibiotics and stable again?

 

We went back on sometimes the same abx, sometimes a different one, and we reached a degree of stable. We have not been back to 95% since July 2012. We were at about 70-75% percent before the T & A. Every time we gained above 85% she got sick again and would decline.

[MomWithOCDSon]

We're you able to get your child back on the antibiotics and stable again?

 

In the year or so we continually tried to cease the abx? Yes, though it wasn't an immediate return. I'd say it took up to 2 weeks or so to return to the "base line" where he'd been before we tried cutting back or ending.

[Missmom]

We're you able to get your child back on the antibiotics and stable again?

 

In the year or so we continually tried to cease the abx? Yes, though it wasn't an immediate return. I'd say it took up to 2 weeks or so to return to the "base line" where he'd been before we tried cutting back or ending.

Same with us except this time it took between two and three weeks to get back to his baseline.

[airial95]

Our experiences have been similar to Nancy's - except our backslide always happened around day 5. We were able to get him off successfully once - but it lasted only 5 weeks before he tested positive for strep again. Just recently - we did a 10 day no abx stint when he finished his cipro - this time he stayed stable, but still was only at about 70% so Dr. B put him back on a combo b/c some of his blood labs came back showing that would be needed.

 

We're currently waiting to schedule our first IVIG...

[airial95]

I should add that my PANDAS daughter only does 30 days of abx at a time, with no weaning and no issues when taken off. When she flares/gets strep, it's simply a 30 day course and she's usually back on track after 2 weeks on the abx. If only they all could be that easy.

[BoyIowa]

We were just in the process. Dropped the last abx and about 3-4 days and ds got sick. Dd brought something home and is sick too. We hoped it would pass - bodies reaction to no abx. To the ped today - back on augmentin for sinus infection and possible Myco P. lower dose augmentin than ds was on, so hoping it works. Fingers crossed.

[dut]

We haven't used proph abx or longterm treatment abx for either dd or ds for a couple of years.

 

Dd had a severe serum sickness from Augmentin and ds gets yeasty very easily and also had had c-diff. Both of my kids react to other things as well as strep so the proph abx didn't seem to lower our number of flares. Also, they both get better eventually and get to almost baseline at some point so longterm abx was never a help as I don't believe we were dealing with ongoing infections.

 

Both kids seem to do just as well with treatment doses of abx for usual duration 7-10 days with lots of ibuprofen when we get a flare. Ibuprofen is the really helpful drug for us. Inflammation, post infection, would appear to be our issue. I think for my kids the BBB and keeping it closed with lower levels of inflammation is key.