Tics coming back off augmentin?

[lmkmip67]

Long story short, Ian has had 8 IVIGs, and many other antibiotic combos, steroids etc. We are at a stand still with treatment and I was seriously ready to just consider that Ian has OCD with a side of ADHD. But we are taking a break from the augmentin (on our own, Dr. B didn't tell us to test it) and the vocal tics are coming back. SO what could that mean? No other PANDAS treatment has made any dent or had any result except augmentin with the vocal tics. We tested for lyme and both times were negative, but I am still open to exploring that with an integrative doctor in a couple of months. I am just really wondering what the significance of this could be? Dr. B doesn't have an answer, just said, then lets keep him on it, it is helping something. Obviously, but what? Since we haven't treated for Lyme at all yet, I am not sure what drugs are used. Is augmentin used? I am just wondering what else it is used for that can cause tics, because there is obviously some very real connection there. Just trying to figure out this little piece and how it significant.

 

Lisa

Edited October 23, 2012 by lmkmip67

[Missmom]

When I try to either wean down or stop the augmentin my sons tics also start to return. It is so frusterating. Just saw our pediatric neurologist and she said basically the same thing, if it is working then let's stick with it. So that is where we are as well. It is frusterating, I know but what else could we do. Don't know how or when we will try reducing the dose again.

[MomWithOCDSon]

For the first 1.5 years, whenever we tried to reduce or remove DS's Augmentin, his behaviors (mostly OCD in our case) would return and/or grow more prevalent. It generally didn't matter what time of year it was, and we never tried reduction/removal except at points in which DS appeared healthy, highly functional with respect to school and social situations, etc.

 

All I can figure is that he still needed the Augmentin . . . that something related to either his immune response or inflammation or brain chemistry relied on the Augmentin for support. Beth Maloney has mentioned a similar reaction on Sammy's part initially, and, in the end, Sammy remained on Augmentin for about 2 years, as well.

 

Finally, after almost 2 years, we successfully (knock on wood) weaned our DS off the Augmentin. But we went very, VERY slowly on the weaning, reducing very gradually and holding at each level for an extended period. Even then, we saw a couple of behavioral bumps but nothing he couldn't handle and eventually pull through.

 

It is a puzzle, and one I hope that the researchers will be able to dive into and figure out one of these days . . . .

[lmkmip67]

Ok, so clearly maybe it is necessary yet. I don't mind so much keeping him on one. I feel I can keep tummy issues at bay with probiotics. I am going to continue the experiment for a couple of weeks, and see if the OCD ramps up at all, too. I am glad that others have seen similar reactions. It makes me feel like at least I am not crazy. It seems we are still dealing with PANDAS then, and just have to keep finding the missing pieces of the puzzle...

[rowingmom]

But we went very, VERY slowly on the weaning, reducing very gradually and holding at each level for an extended period. Even then, we saw a couple of behavioral bumps but nothing he couldn't handle and eventually pull through.

Could you please elaborate on the very, VERY slow weaning protocol. Thanks so much.

 

We have tried several times to reduce multiple Abx combos down to one Abx with herbal support, but ticcing has broken through each time after a couple of months.

Edited October 24, 2012 by rowingmom

[LNN]

Since we haven't treated for Lyme at all yet, I am not sure what drugs are used. Is augmentin used? I am just wondering what else it is used for that can cause tics, because there is obviously some very real connection there. Just trying to figure out this little piece and how it significant.

 

Augmentin is sometimes used for Lyme in conjunction with other abx. It depends on the individual and what sort of co-infection(s) are at work. Generally, you need one abx that works extra-cellularly and one that works intra-cellularly (a macrolide like zith) and sometimes a third abx that's a cyst-buster (like tindamax or flagyl). The extra-cellular abx are often rotated. My son has always responded well to augmentin and omnicef also made a big difference (omnicef aka ceftin crosses the BBB).

 

It's possible that this clue means there is an infection component to your picture, that you just haven't hit on the right plan yet. It seems like doing a combo abx trial might be worthwhile. Fwiw - Dr B put my son on an augmentin+zith combo early in our treatment and it did nothing. It wasn't the right combo for my son. When we started with our LLMD, he added another abx and that made a big difference. So sometimes it's a matter of using the right combo, not just one particular combo. And over time, the "right" combo is only right for right now. You end up needing to rotate.

 

One word of caution - my son was symptom-free at the start of the summer and had been good for several months. Sp per ILADS protocol, we stopped all abx to see if he could remain symptom free. Things crept back and by the end of the summer, he needed to re-start abx. It took about 2 months to get things back to baseline. So just be cautious about how long you do your trial. Sometimes getting that horse back in the barn can be tough.

[Missmom]

Since we haven't treated for Lyme at all yet, I am not sure what drugs are used. Is augmentin used? I am just wondering what else it is used for that can cause tics, because there is obviously some very real connection there. Just trying to figure out this little piece and how it significant.

 

Augmentin is sometimes used for Lyme in conjunction with other abx. It depends on the individual and what sort of co-infection(s) are at work. Generally, you need one abx that works extra-cellularly and one that works intra-cellularly (a macrolide like zith) and sometimes a third abx that's a cyst-buster (like tindamax or flagyl). The extra-cellular abx are often rotated. My son has always responded well to augmentin and omnicef also made a big difference (omnicef aka ceftin crosses the BBB).

 

It's possible that this clue means there is an infection component to your picture, that you just haven't hit on the right plan yet. It seems like doing a combo abx trial might be worthwhile. Fwiw - Dr B put my son on an augmentin+zith combo early in our treatment and it did nothing. It wasn't the right combo for my son. When we started with our LLMD, he added another abx and that made a big difference. So sometimes it's a matter of using the right combo, not just one particular combo. And over time, the "right" combo is only right for right now. You end up needing to rotate.

 

One word of caution - my son was symptom-free at the start of the summer and had been good for several months. Sp per ILADS protocol, we stopped all abx to see if he could remain symptom free. Things crept back and by the end of the summer, he needed to re-start abx. It took about 2 months to get things back to baseline. So just be cautious about how long you do your trial. Sometimes getting that horse back in the barn can be tough.

Did you stop cold turkey, or did you slowly wean off reducing the dose weekly, monthly, or daily? Just curious. At least you figured it out before any major downside.

[MomWithOCDSon]

Could you please elaborate on the very, VERY slow weaning protocol. Thanks so much.

 

We have tried several times to reduce multiple Abx combos down to one Abx with herbal support, but ticcing has broken through each time after a couple of months.

 

My DS was on 2,000 mg. of Augmentin XR daily as his "full dose." When we started weaning, we started off keeping a 1,000 mg. dose of the XR in the morning, and then substituting an 875 mg. regular Augmentin for the night time dose; we left this in place for two weeks. Then we further reduced the night time dose to only 500 mg., and again left that in place for two weeks. Then we just went with a morning dose of the XR (1,000 mg.) for another two weeks, substituting olive leaf for the night time abx dose.

 

Then we started reducing the morning dose, again in approximately two week increments: from 1,000 mg. XR to 875 mg. regular augmentin. Then down to 875 mg. every other day. Then 500 mg. every other day, then 500 mg. every third day. After about 3 months, we were entirely done with abx and transitioned to olive leaf, twice daily. Which we still do.

 

He had some bumps along the way, but overall, it finally seems to have worked. We're at almost 11 months now off abx (knock on wood)!

[lmkmip67]

We have done a few combos with Augmentin, Azith, Bactrim, plus couple of others. But I will be careful how long we test this for. Thinking only a couple of weeks at this point.