Tapering off Augmentin

[bigmighty]

Looking for thoughts on whether this seems to be a solid plan. Would love some BTDT advice.

 

DS 15 (now in remission after a 16 mo severe exacerbation) was on Aug 875 2x daily for over 14 months (and on numerous other antibiotics for the 12 months prior to that). Successfully tapered down to Aug 500 2x daily about six months ago. A few months later, tried to taper to Aug 250 and all of the OCD and paranoia came back within 48 hours. Ramped back to Aug 500 and symptoms receded in a few weeks. Two months ago, DS started breaking an Aug 875 in half and taking half in the morning and half in the evening. Managed to do that successfully. So, at present he is on Aug 437.5 2x daily.

 

If his labs are okay in Nov, the plan is to switch him to Aug 375 2x daily around Thanksgiving (he would be taking 1 1/2 of the Aug 250 twice a day). In Feb, he would continue with Aug 375 in the morning but switch to Aug 250 in the evening. In May, he would then cut down to Aug 250 2x daily. In August, he would cut down to Aug 125 2x per day (breaking the 250 pill in half). If that is not successful, we would switch back to Aug 250 in the daytime and Aug 125 at night. We haven't discussed what next after that with the doc. I assume Aug 125 in the daytime only, then stopping completely sometime in 2015.

 

I am very conflicted about this path. Part of me knows we're playing with fire. He is on florastor and eats yogurt daily. But I know it must be awful for his digestive system for him to have been and continue to be on high dose antibiotics for all of this time. He has had no luck with adding additional probiotics. They cause long-term systemic hives, nausea and vomiting. We have tried five different kinds now, all recommended on this site, but without success. So, there is a very real fear that he will end up with a C-diff infection or worse.

 

On the other hand, when we tried to reduce antibiotics too quickly, we ended up on a potentially fast track to a residential program. If we stick with the antibiotics, he functions extremely well, is involved in school activities, does fine academically, and (with the addition of methyl b12/methylfolate drops for the recently diagnosed MTHFR gene mutations), is actually doing fairly well socially. DS really does not want us to mess with that. He's a sophomore in high school and an exacerbation would mean totally screwing up his academics, which might keep him from getting into college.

 

So - I'm totally questioning myself and have no idea what to do or which way to turn. I have a kid who has been on high dose antibiotics for three years, and the tentative plan is for him to remain on them for at least another year and a half. WWYD or what have you done if in a similar situation? Many thanks for reading my brain dump/saga. - Suzanne

 

[SSS]

Well, I'd thank my lucky stars I had found a product (and just 1!) that worked so well, and did the trick like Augmentin does for your son.

You've laid it out pretty clear-

If we had 1 product that did all that, I'd be all over it,

and don't think I'd give it up.

Hard decision, especially with the winter months...

[MomWithOCDSon]

I'm with S&S. The worry about C-diff and similar issues is valid, but if your DS has shown no signs of that thus far, then I would think the chances of his developing it now are not especially strong either? I mean, what does the literature and/or your doctor say about why/when c-diff can develop . . . if it hasn't shown its face after 3 years of abx, how likely is it that it'll creep into the picture for the last 18 months of abx treatment?

 

Even if you can't do "high-dose" probiotics, it sounds as though the Florastor (sach and yogurt organisms are doing the trick, and there's some evidence that "high-dose" probiotics aren't necessarily any more effective than the RIGHT probiotics in the RIGHT doses. We, in fact, found a "sweet spot" with our DS, and probiotic doses over and above that actually just resulted in additional gas, bloating and discomfort, so they didn't seem to be of benefit.

 

My DS took Augmentin XR, 2,000 mg. daily, for about 2 years, at which point we began a slow wean. So I am all about the benefits of Augmentin and the benefits of a slow wean (fast never worked for us, either). Yes, it may be "playing with fire" in one respect, but most of what we do for our PANDAS/PANs kids could be considered pyromaniacal in one way or another, couldn't it? In the end, it becomes a question of quality of life, and you seem to have pretty much hit the nail on the head there; he's doing better, he's successful in school, he wants to remain so.

 

So, I'd take a deep breath, check in with your gut, and follow it! You're a great mom and you've come quite a distance . . . maybe it's time to trust yourself! :-)

[bigmighty]

Nancy, thanks for the "pyromaniacal" comment. I needed to smile today.

[JoyBop]

I have not walked in your shoes but from an outsider perspective I would say that at this point the benefit of antibiotics outweighs the risk of c-diff. If it were me I would work with my doctors to come up with a plan to very slowly reduce the aug to find that sweet spot and keep him there and let him enjoy the remainder of his high school years pandas free.

 

You should consider contacting Beth Malloney as she has spoken about that very topic as her son Sammy was in the same boat. You can listen to her speak on the first episode of pandas radio if you haven't already. I've heard she responds to people and I think she could give you a great deal of insight on this particular subject.