Tried ABX, cleared up, regression while still taking them

[kcdc3]

My DD has been on 2 separate trials on abx. First, Amoxicillian. She cleared up within 5 days and was GREAT for about 5 days, then regressed. This month, she was put on Zith and did the exact same thing. She cleared up wonderfully- tics left, better more stable mood, able to "conquer" more OCD, then after 5 days, she regressed completely (everything came back except the tics.)

Has anyone else experienced this?

[peglem]

The regression is while still on abx? Could it be related to yeast?

[smartyjones]

 

 

 

[MomWithOCDSon]

My DD has been on 2 separate trials on abx. First, Amoxicillian. She cleared up within 5 days and was GREAT for about 5 days, then regressed. This month, she was put on Zith and did the exact same thing. She cleared up wonderfully- tics left, better more stable mood, able to "conquer" more OCD, then after 5 days, she regressed completely (everything came back except the tics.)

Has anyone else experienced this?

 

Yes, we've experienced essentially the same thing, twice now. We're sort of new to the whole PANDAS thing, so we've just been trying to stick it out, keep an eye on the experiences posted here and a couple of other places, and keepin' the faith, so to speak.

 

Similar to your experience, we have a wonderful response for the first week or so on a new abx course, then he would sort of "plateau," and ultimately start to regress in terms of his most tenacious OCD behaviors (mostly contamination fears, unwanted thoughts).

 

Isn't this part of the jagged "saw blade" type of recovery I keep hearing about? I know that, according to Beth Maloney, Sammy's recovery was very much two steps forward, one step back, at least early on. I'm hanging onto that, I suppose.

 

The one thing we have been able to track as remaining consistently improved while on the abx, though, even if some of the other behaviors regress: his total meltdowns are fewer, shorter and less hysterical overall. So, for us, that still speaks of progress.

[thereishope]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

[Worried_Dad]

In "Saving Sammy," Beth Maloney describes a similar pattern with Sammy. After they got the elevated ASO titer result back and began abx treatment, they started with penicillin, I believe. It worked for a while - produced dramatic improvement - then OCD behaviors started creeping back. Even on the augmentin, Sammy's improvement didn't last on the standard dosage. Not until they cranked the dose up to 2000 mg daily did his progress sustain itself, and any lowering of the dose triggered a regression.

 

We saw the same pattern with our son. Originally, amoxil helped a lot, but then he plateaued and slid backward. On standard dose of augmentin, we saw progress for awhile, but then he relapsed. So far, on the 2000 mg daily dose, the positive trend is continuing.

 

So it seems like these poor kids just can't beat the infection on a standard dose for a normal duration, and different abx seem to work better for different children. The challenge may be finding that "magic formula" of the right dose of the right abx for the right time period.

 

Hope you find that magic formula... and we're still praying that the one we're using doesn't lose its magic!

 

 

My DD has been on 2 separate trials on abx. First, Amoxicillian. She cleared up within 5 days and was GREAT for about 5 days, then regressed. This month, she was put on Zith and did the exact same thing. She cleared up wonderfully- tics left, better more stable mood, able to "conquer" more OCD, then after 5 days, she regressed completely (everything came back except the tics.)

Has anyone else experienced this?

 

Yes, we've experienced essentially the same thing, twice now. We're sort of new to the whole PANDAS thing, so we've just been trying to stick it out, keep an eye on the experiences posted here and a couple of other places, and keepin' the faith, so to speak.

 

Similar to your experience, we have a wonderful response for the first week or so on a new abx course, then he would sort of "plateau," and ultimately start to regress in terms of his most tenacious OCD behaviors (mostly contamination fears, unwanted thoughts).

 

Isn't this part of the jagged "saw blade" type of recovery I keep hearing about? I know that, according to Beth Maloney, Sammy's recovery was very much two steps forward, one step back, at least early on. I'm hanging onto that, I suppose.

 

The one thing we have been able to track as remaining consistently improved while on the abx, though, even if some of the other behaviors regress: his total meltdowns are fewer, shorter and less hysterical overall. So, for us, that still speaks of progress.

[kcdc3]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

 

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

[momaine]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

 

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

 

 

What is her weight and what dose is she on of Zith?

[MomWithOCDSon]

In "Saving Sammy," Beth Maloney describes a similar pattern with Sammy. After they got the elevated ASO titer result back and began abx treatment, they started with penicillin, I believe. It worked for a while - produced dramatic improvement - then OCD behaviors started creeping back. Even on the augmentin, Sammy's improvement didn't last on the standard dosage. Not until they cranked the dose up to 2000 mg daily did his progress sustain itself, and any lowering of the dose triggered a regression.

 

We saw the same pattern with our son. Originally, amoxil helped a lot, but then he plateaued and slid backward. On standard dose of augmentin, we saw progress for awhile, but then he relapsed. So far, on the 2000 mg daily dose, the positive trend is continuing.

 

So it seems like these poor kids just can't beat the infection on a standard dose for a normal duration, and different abx seem to work better for different children. The challenge may be finding that "magic formula" of the right dose of the right abx for the right time period.

 

Hope you find that magic formula... and we're still praying that the one we're using doesn't lose its magic!

 

Thanks, Dad. I've been wondering myself if the 2,000 mg. augmentin XR (time release) isn't our "magic dose," as well. We've stepped down only slightly to the 875 mg. augmentin twice daily as of a few days ago; for the first few days, we saw some regression, but he seems to be holding pretty steady now. Maybe he'll be able to maintain and continue to improve, even on this slightly reduced dose?

 

I remember Sammy stepped down later in his recovery to a lower dosage and found it difficult, but as Beth said, he was determined to make it through this reduction this time. I'm not entirely sure what that means, except that my interpretation is that reducing the dosage can make some of the OCD behaviors feel stronger, but a kid who's old enough and aware enough can actively fight against allowing them to overwhelm him?

 

My most recent advice from Beth was to make sure my son could "tolerate" a reduction in dosage before enacting it. So, if there is a slight regression but he begins to get a grip again, then he's "tolerating" it? Thankfully, our son has never displayed the more extreme behaviors that Sammy had, so our ability to discern regression from plateau from progress can be challenging at times. We're having to step back, mostly, and try to be mindful of the Big Picture.

[kcdc3]

What is her weight and what dose is she on of Zith?

 

She is 80 pounds and on 250 mg per day.

[mom md]

Yes, because I think it is an autoimmune disease and not an infectious one. I think as we learn more we will view the antibiotic more as preventative and not as theraputic. I know Beth Maloney had success with this route but I think the autoimmune aspect needs to be studied more. My son has been back to baseline after PEX and steroids. Augmentin did not help and Azithromycin makes it tolerable but does not cure him. We are doing IVIG next month to "reset" the T-cells which is where I think the true treatment will be reached. I know no one really knows but that is what I think. The antibiotics are important but many kids will need more than that.

[MomWithOCDSon]

Yes, because I think it is an autoimmune disease and not an infectious one. I think as we learn more we will view the antibiotic more as preventative and not as theraputic. I know Beth Maloney had success with this route but I think the autoimmune aspect needs to be studied more. My son has been back to baseline after PEX and steroids. Augmentin did not help and Azithromycin makes it tolerable but does not cure him. We are doing IVIG next month to "reset" the T-cells which is where I think the true treatment will be reached. I know no one really knows but that is what I think. The antibiotics are important but many kids will need more than that.

 

Please let us know how the IVIG works for you. From other posts here, I see that even many IVIG patients return for additional IVIG and other treatments, so it is something of a mystery to me if anything is a "permanent" fix. Sammy Maloney seems to be something of an enigma in that regard.

[Alex]

Yes, because I think it is an autoimmune disease and not an infectious one. I think as we learn more we will view the antibiotic more as preventative and not as theraputic. I know Beth Maloney had success with this route but I think the autoimmune aspect needs to be studied more. My son has been back to baseline after PEX and steroids. Augmentin did not help and Azithromycin makes it tolerable but does not cure him. We are doing IVIG next month to "reset" the T-cells which is where I think the true treatment will be reached. I know no one really knows but that is what I think. The antibiotics are important but many kids will need more than that.

 

Check out SF Mom's recent post 'Important to Understand!' which uses several research studies to make the case that there is an ongoing Strep presence in these kids and that is the real reason you are treating with antibioitcs.

 

Alex

[mom md]

I do think that it also is like other autoimmune encephalitis (guillian barre) and that several IVIG treatments may be needed. I think the thought that one treatment is needed is not the case in several patients, especially the ones that have had it for a while. I thnk they really do not know the recipe that will work and most likely it differs per child.

[momaine]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

 

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

 

 

What is her weight and what dose is she on of Zith?

 

That seems like a low dose compared to what many doctors prescribe for PANDAS. My dd is on both 2000mg of Augmentin XR AND 500mg of Zithromax. She weighs about 92 lbs. The idea, I believe is, if it has gone intracellular, you need to really have some strong antibiotics to wipe it out. So far, she has improved again since adding the Zith. She is hardly ticing at all these last few days and her reassurance questions have gone from every few seconds to about 30 minutes apart.

 

What I am wondering is, are these cases where people are giving up on a particular antibiotic done before a high enough dose is maintained for some time, (including waiting out the saw tooth recovery pattern) or are they seeing a back slide (which could be due to anything that stresses the immune system) and giving up too quickly.

 

Angela