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Off ABX Trial


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Spoke with Dr. T a few weeks ago and we are doing a trial off Abx with new labs. WHOA. My dd 9 had age regression, nausea, bellyaches, diarrhea, mood swings, complaining of just not feeling herself. Ds 5 started wetting the bed again and had severe rage and mood swings. Other ds5 had sudden sadness tears etc. I couldn't take it. Consult tomorrow, I started them back on ABX and BOOM..... 2 days happy house! No wetting the bed, a lot less anger, daughter back to playing with her friends, bellyaches slowly going away. Here is the kicker, I only put Meg and Joe back.....Kyle didn't seem severe enough and has lots of belly issues with Abx......so why is he better too?

 

Any thoughts?

 

Anti DNASE 95, qoq and pending....slight 5 pt elevation

ASO neg

Bartonella neg

Babesia neg

Lyme neg

Erlichia neg

ANA neg

EBV neg

Normal Thyroid

ASO neg

Strptozyme neg

Both boys Glucose 59

14 Serotypes almost all <0.3

Kyle's Basophils CRITICALLY high at 2.5 !?!?!?

Both boys HSV 1 high at 9.07 and 12.6. Normal <0.90

Coxsackie and igg subclasses pending

 

ANY input would be greatly appreciated.

Edited by JenniferG
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Spoke with Dr. T a few weeks ago and we are doing a trial off Abx with new labs. WHOA. My dd 9 had age regression, nausea, bellyaches, diarrhea, mood swings, complaining of just not feeling herself. Ds 5 started wetting the bed again and had severe rage and mood swings. Other ds5 had sudden sadness tears etc. I couldn't take it. Consult tomorrow, I started them back on ABX and BOOM..... 2 days happy house! No wetting the bed, a lot less anger, daughter back to playing with her friends, bellyaches slowly going away. Here is the kicker, I only put Meg and Joe back.....Kyle didn't seem severe enough and has lots of belly issues with Abx......so why is he better too?

 

Any thoughts?

 

Anti DNASE 95, qoq and pending....slight 5 pt elevation

ASO neg

Bartonella neg

Babesia neg

Lyme neg

Erlichia neg

ANA neg

EBV neg

Normal Thyroid

ASO neg

Strptozyme neg

Both boys Glucose 59

14 Serotypes almost all <0.3

Kyle's Basophils CRITICALLY high at 2.5 !?!?!?

Both boys HSV 1 high at 9.07 and 12.6. Normal <0.90

Coxsackie and igg subclasses pending

 

ANY input would be greatly appreciated.

 

did they have throat cultures while off abs?

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Were they taken off abx abruptly, or were they tapered? We had severe regression when we tried to stop "cold turkey" or even take a dramatic step down in dosage, but when we weaned very slowly, we didn't have the dramatic regression.

 

As for your third kiddo improving despite not being put back on abx, if he's apt to respond to mere exposure, and not just actively catching an illness, it stands to reason he could've been reacting to the hand/foot/mouth the other two had, and improving once the abx improved their conditions. Or, if they're close as siblings and spend quite a bit of time together, I suppose it's also possible he may have been taking more of a behavioral lead from the other two, sort of a "sympathetic" response? :blink:

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Were they taken off abx abruptly, or were they tapered? We had severe regression when we tried to stop "cold turkey" or even take a dramatic step down in dosage, but when we weaned very slowly, we didn't have the dramatic regression.

 

As for your third kiddo improving despite not being put back on abx, if he's apt to respond to mere exposure, and not just actively catching an illness, it stands to reason he could've been reacting to the hand/foot/mouth the other two had, and improving once the abx improved their conditions. Or, if they're close as siblings and spend quite a bit of time together, I suppose it's also possible he may have been taking more of a behavioral lead from the other two, sort of a "sympathetic" response? :blink:

We just stopped. We didn't taper. How do you taper? Does it matter the dose, or just slowly reduce?

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Jen G-

 

Is it possible the regression was not from coming off of the abx, and actually from the illness? I think that is a strong possibility...

 

If you tried to come off the abx again, I would consider tapering (like momwithocdson said) and maybe adding some advil while tapering. We taper everything- advil, steroids and abx- even probiotics if I want to give that a break. Who knows?

 

My kids were on full strength abx for two years before we even tried to come off- but then we were successful on a daily basis off of abx. I know "Sammy" needed a few years on full strength before he could come off as well. How long have your kids been on the antibiotics?

 

Good luck figuring it out!

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We just stopped. We didn't taper. How do you taper? Does it matter the dose, or just slowly reduce?

 

There's mounting anecdotal evidence that tapering abx is important, and I recall reading here that one of the leading docs (maybe Dr. T?) has recently opined that tapering is necessary for PANDAS patients. Like DCMom has said, we taper everything with our DS, and he, too, was on full strength abx for about 2 years, like her kids and like Sammy Maloney. As I recall Sammy's story, too, they tapered his dose in the final weeks he was taking abx, as well.

 

I think the degree and length of the taper has a lot to do with how high the dose is to begin with, and potentially how long the kid's been taking it, too. I'd be surprised if anyone has actually developed any formula, but we basically reduced the dose by about an eighth and left it there for about a week, took it down another eighth, left it there for a week, so on and so forth until we couldn't cut the pill any smaller, so then we spent a couple of weeks doing one day on, one day off, until we were down to no days on at all. My DS was on 2,000 mg. Augmentin XR daily, and overall, it took us about 3 months to taper completely off.

 

I think the bottom line is that the abx can bring more to the table than just microbe fighting . . . some are thought to be anti-inflammatory, and some are thought to be glutamate-modulatory . . . so abruptly ceasing that buffer and/or support might throw the body an unwanted curve, like the snapping of a rubber band. So better to ease the stretch slowly and do what we can to prevent the "snap!" ;)

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We just stopped. We didn't taper. How do you taper? Does it matter the dose, or just slowly reduce?

 

There's mounting anecdotal evidence that tapering abx is important, and I recall reading here that one of the leading docs (maybe Dr. T?) has recently opined that tapering is necessary for PANDAS patients. Like DCMom has said, we taper everything with our DS, and he, too, was on full strength abx for about 2 years, like her kids and like Sammy Maloney. As I recall Sammy's story, too, they tapered his dose in the final weeks he was taking abx, as well.

 

I think the degree and length of the taper has a lot to do with how high the dose is to begin with, and potentially how long the kid's been taking it, too. I'd be surprised if anyone has actually developed any formula, but we basically reduced the dose by about an eighth and left it there for about a week, took it down another eighth, left it there for a week, so on and so forth until we couldn't cut the pill any smaller, so then we spent a couple of weeks doing one day on, one day off, until we were down to no days on at all. My DS was on 2,000 mg. Augmentin XR daily, and overall, it took us about 3 months to taper completely off.

 

I think the bottom line is that the abx can bring more to the table than just microbe fighting . . . some are thought to be anti-inflammatory, and some are thought to be glutamate-modulatory . . . so abruptly ceasing that buffer and/or support might throw the body an unwanted curve, like the snapping of a rubber band. So better to ease the stretch slowly and do what we can to prevent the "snap!" ;)

 

So glad to read this post today. I have said this to my husband and he said there was no need to taper it's just abx. So at least now I can show him this. We just reduced my DS12 abx from high dose to 1/2 that dose of Zith. But I tapered it slightly to get there. I also told him when Dr B will give us the okay to stop I'm weaning him off slowly. To me reducing slowly is common sense. Your body get's used to something and all of a sudden it's not there anymore it needs time to adjust.

 

Thanks for posting!

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