Behaviors and Abx

[MomWithOCDSon]

We have such a broad and deep expanse of experience here, I thought maybe we could do what many of our medical practitioners have not yet been able to piece together.

 

My main line of inquiry is as follows: when antibiotics are found to be effective in fighting PANDAS (either short-term or long-term), is there some sort of "ideal marriage" of any one antibiotic, or class of antibiotic, and your child's primary symptom set?

 

I know many people say their children have responded best to azith; others see better results with Augmentin or Augmentin XR. I've also heard of kids who's responded well to just plain old penicillin. But if we could gather some sort of experiential concensus among all of us that would help us reach for the most effective class of abx for our child FIRST, instead of second or third . . . wouldn't that be worth exploring?

 

So, please respond to the poll and then make a post, too, to paint the picture for us.

 

For instance:

 

DS13 is wholly OCD in terms of behavioral manifestation. We've never tried azith because Augmentin XR has been very effective for us.

 

Thansk!

[Megs_Mom]

OCD, azitz. Although I believe it is likely less the symptom that tells you the abx to use, and more the underlying issue. I don't know either way, that is just my gut feeling.

[nicklemama]

OCD. We've only used biaxin. DS had a terrible reaction to amoxi when he was four (now I wonder if it was his first brush w/ PANDAS, caused irritibility and trantruming). Right now, what exactly is causing his PANDAS is unknown. ASO and DNAse normal. Waiting on Cunningham results. Never had a throat culture when sick. I believe that's why biaxin was chosen and it has been very effective. Raging, anger, anxiety, hyperactivity and all those ocd's has lessened a great deal. Enough so that we are currently leading normal lives but walking on eggshells waiting for the next exacerbation. I guess that's better than walking on eggshells waiting on the next big rage explosion:)

 

Cindy

[MomWithOCDSon]

OCD, azitz. Although I believe it is likely less the symptom that tells you the abx to use, and more the underlying issue. I don't know either way, that is just my gut feeling.

 

You may very well be right, especially when abx is used at initial onset of an active infection.

 

But I guess my curiosity lies with those of us who continue to see behavioral benefits to abx use long after the infection, and at dosages that exceed what is normally thought of as "prophylactic." Or, even if at standard prophylactic doses, still see behavioral benefits that evaporate with discontinuing of the abx, even without any evidence of fresh exposure, etc.

[peglem]

I chose OCD as presentation, although hands down, our biggest concern is raging. However I think OCD may be at the root of the rages, soo... But my child has some pretty debilitating complex tics as well.

 

Chose Azith for abx. Its been the most successful chronic abx for us, but when things get bad on that we find great relief w/ a couple of weeks of rifampin/augmentin. Then we go back on the zith.

[Megs_Mom]

OCD, azitz. Although I believe it is likely less the symptom that tells you the abx to use, and more the underlying issue. I don't know either way, that is just my gut feeling.

 

You may very well be right, especially when abx is used at initial onset of an active infection.

 

But I guess my curiosity lies with those of us who continue to see behavioral benefits to abx use long after the infection, and at dosages that exceed what is normally thought of as "prophylactic." Or, even if at standard prophylactic doses, still see behavioral benefits that evaporate with discontinuing of the abx, even without any evidence of fresh exposure, etc.

 

Yes, that is us too. 100%, but can't get off azith. Now that we are in great shape with recent increase, we plan to wait a year before decreasing. In the meantime we continue to try to heal stomach issues that may be last remaining cause of inflammation or bbb breach. We are 100% behaviorally, but not confident we are done with this. We are over 2 years in, so you'd think infection is gone, although that is not definite. But I still think that the behavior is just a symptom. It would be great if the symptom could give a clue to the right abx, I just am not sure it is that easy. Great question though, hope I am wrong.