This is probably way too simple, but....

[P_Mom]

If your child does well off antibiotics......I would think that would mean there is no underlying infection.? Some kids need to stay on antibiotics to reduce symptoms....if they go off..symptoms come back. I would think that indicates an existing, persistent infection, or, someone in the house who is exposing . (Worried Dad's case????)

 

For those who do well off of antibiotics, and use them strictly for prophylactic measures for strep (PANDAS).....wouldn't that be an indicator of no underlying infection???

[momaine]

If your child does well off antibiotics......I would think that would mean there is no underlying infection.? Some kids need to stay on antibiotics to reduce symptoms....if they go off..symptoms come back. I would think that indicates an existing, persistent infection, or, someone in the house who is exposing . (Worried Dad's case????)

 

For those who do well off of antibiotics, and use them strictly for prophylactic measures for strep (PANDAS).....wouldn't that be an indicator of no underlying infection???

this is where I wish I had more medical background but I'll throw some stuff out there and maybe someone can comment on it. But I think that some antibiotics can help with autoimmune symtpoms even after the infection is gone because they are immune modulating. Not exactly sure what that means though I think I've heard it mentioned before. Maybe someone esle can comment on that.

[P_Mom]

If your child does well off antibiotics......I would think that would mean there is no underlying infection.? Some kids need to stay on antibiotics to reduce symptoms....if they go off..symptoms come back. I would think that indicates an existing, persistent infection, or, someone in the house who is exposing . (Worried Dad's case????)

 

For those who do well off of antibiotics, and use them strictly for prophylactic measures for strep (PANDAS).....wouldn't that be an indicator of no underlying infection???

this is where I wish I had more medical background but I'll throw some stuff out there and maybe someone can comment on it. But I think that some antibiotics can help with autoimmune symtpoms even after the infection is gone because they are immune modulating. Not exactly sure what that means though I think I've heard it mentioned before. Maybe someone esle can comment on that.

Momaine,

 

Right! But I am talking about the kids who do well off antibiotics completely.

[MomWithOCDSon]

this is where I wish I had more medical background but I'll throw some stuff out there and maybe someone can comment on it. But I think that some antibiotics can help with autoimmune symtpoms even after the infection is gone because they are immune modulating. Not exactly sure what that means though I think I've heard it mentioned before. Maybe someone esle can comment on that.

 

 

Absolutely -- there are papers out there attesting to such. Plus, there are other characteristics of some abx (glutamate modulating, antidepressant) that may play a role, as well.

[MomWithOCDSon]

In general, you mean AFTER the infection has been 100% arrested, right?

 

I mean, many of us came to PANDAS after years of going in other directions. In our case, we were chasing classic OCD for more than 6 years before finding PANDAS and trying abx therapy. In our case, our DS tested with high titers, suggesting that he was responding to a strep infection, even though we'd never seen classic symptoms. So we didn't know where the strep was hiding out . . . could've been his gut, could've been his sinuses, given his allergies and gastro troubles over the years.

 

So, we put him on full-strength abx for a year; we just began lowering the dose to something sub-high about 5 weeks ago, and he seems to be hanging in there. So, in our case, no more active infection? I'd like to think that's true. I'd like to think that a full year of full dose abx finally wiped out every spec of "intracellular strep" in his body.

 

But if strep really can go intracellular, does that mean that the longer one goes without treatment, the more places it may have found to hide? So the longer the actual treatment regimen must be followed?

 

Or is it the case, as Momaine has mentioned, that the abx are doing MORE than just arresting an infection . . . that they're actually a helpful "supplement" for some that bring something else to the table? In our case, our DS presents predominantly with OCD, and Augmentin is a b-lactam abx, which class of abx is thought to have glutamate modulating properties, and OCD is now thought to have a connection with unmodulated glutamate in parts of the brain, SO . . . . . . .

 

Research, research! Who's going to do the research we all so desperately need?!?!?! 100 years from now, people are going to think we were all so stupid and backwards not to recognize all the connections between brain and body science!

 

I don't know, either.

[thereishope]

I agree. If the child can go off antibiotics for a long enough time (not sure what the timeline would be) and no PANDAS symptoms resurface, I would think that indicates infection is gone and antibodies lowered.

 

If your child does well off antibiotics......I would think that would mean there is no underlying infection.? Some kids need to stay on antibiotics to reduce symptoms....if they go off..symptoms come back. I would think that indicates an existing, persistent infection, or, someone in the house who is exposing . (Worried Dad's case????)

 

For those who do well off of antibiotics, and use them strictly for prophylactic measures for strep (PANDAS).....wouldn't that be an indicator of no underlying infection???

[T_Mom]

It is interesting to note that in one of the more recent NIH studies this issue of "just what IS going on when we use antibiotics for PANDAS" was described--

 

http://clinicaltrials.gov/archive/NCT00001658/2008_03_03

 

Here is a quote from the most current revision (2008):

 

"An increasing body of evidence suggests that Group A beta-Hemolytic Streptococcal throat infections (GABHS) may trigger the onset of obsessive-compulsive disorder (OCD) and/or tic disorder in certain vulnerable children via an autoimmune process. In this subgroup of children with childhood-onset OCD and tic disorders, preliminary data suggest some children have a rapid response to amoxicillin. After only 24 to 48 hours of treatment, they have a dramatic reduction in OC symptoms and tics. To date, we have observed this phenomenon in at least 5 children, each of whom relapsed when the amoxicillin was stopped. These observations raise a number of questions, including whether or not amoxicillin has a direct central nervous system (CNS) effect or an indirect effect through perturbations of the immune system (e.g., cytokine shifts)."

"The purpose of this study is to determine if amoxicillin is an effective treatment for PANDAS, as well as examining possible mechanisms of this effect. We propose to do this with a 3-month double-blind placebo-controlled crossover trial of amoxicillin treatment with a randomized A-B-A-B design. Outcome measures will be blinded ratings of tic severity, standardized measures of psychopathology, and immunologic assays (such as type I and type II cytokine levels)."

Edited October 17, 2010 by T.Mom

[P_Mom]

Thanks all!

 

My son had a rapid, 24 hr. response to Amox........ and it never returned near to the extent that it was on oset.

Edited October 17, 2010 by P.Mom

[P_Mom]

Maybe that should be our next poll. Time of onset till time of treatment....and response.

Edited October 17, 2010 by P.Mom

[MomWithOCDSon]

Thanks all!

 

My son had a rapid, 24 hr. response to Amox........ and it never returned near to the extent that it was on oset.

We had the same phenomenon. Within 48 hours of Augmentin, the improvement was dramatic. But that rate of improvement was never replicated again throughout the year. Rather, it's been a slow, steady climb out of the depths. The rocket blast only lasted a couple of weeks.

[Megs_Mom]

I would guess that if you go off abx, and no ill effects - then you are good, and the abx is just preventative. We had a nice 3 year remission after the first episode - with no abx and no issues.

 

On the flip side, I don't think that if you go off and you DO have an adverse reaction, that it necessarily means that you still have an active infection. It could mean that - or that you have another person infected in the house. It could also mean that the abx is doing something else for that child - perhaps the illness was untreated too long - and the abx is either anti-inflamatory or immune modulating. There have been studies showing both of these effects in other autoimmune diseases.

 

It's an interesting question. Once this illness came back with a vengence, it never went away - and the abx does something for her - with an increased dose, we are now as close to 100% as we have ever been. I hope the research catches up soon, to our treatment plan - I'd love to have her on something other than abx, if it could replicate the positive part of the abx. But for now, it's a great solution, and we so appreciate the effects.

[T_Mom]

I would guess that if you go off abx, and no ill effects - then you are good, and the abx is just preventative. We had a nice 3 year remission after the first episode - with no abx and no issues.

 

On the flip side, I don't think that if you go off and you DO have an adverse reaction, that it necessarily means that you still have an active infection. It could mean that - or that you have another person infected in the house. It could also mean that the abx is doing something else for that child - perhaps the illness was untreated too long - and the abx is either anti-inflamatory or immune modulating. There have been studies showing both of these effects in other autoimmune diseases.

 

It's an interesting question. Once this illness came back with a vengence, it never went away - and the abx does something for her - with an increased dose, we are now as close to 100% as we have ever been. I hope the research catches up soon, to our treatment plan - I'd love to have her on something other than abx, if it could replicate the positive part of the abx. But for now, it's a great solution, and we so appreciate the effects.

 

 

I agree Meg'sMom--We don't fully know just what effect the abx are having--as in the research I posted above, they were looking at the effects of abx, most clearly not necessarily if it was "clearing an infection":

 

"...After only 24 to 48 hours of treatment, they have a dramatic reduction in OC symptoms and tics. To date, we have observed this phenomenon in at least 5 children, each of whom relapsed when the amoxicillin was stopped. These observations raise a number of questions, including whether or not amoxicillin has a direct central nervous system (CNS) effect or an indirect effect through perturbations of the immune system (e.g., cytokine shifts)."

[AmySLP]

Wanted to do an experiment with my 6 y/o daughter~interesting how it corresponds with this post. She had been on a treatment dose of ABX (12oo mg Augmentin ES) after an exacerbation in May (following 10 months of remission without ABX-she came hope with choreiform movements out of the blue). She then took a prophylaxis dose of Augmentin ES(600mg/day) since mid August. Her primary symptom is tics, mild OCD, rages-these were well controlled with ABX. I stopped the ABX 3 weeks ago, just to see if things held-They did, until Friday, tics back very evident. New movements I have not seen before. We immediately went to the pharmacy to fill the rx refill and by last night (24 hours & 2 doses of Augmentin 600mg later-no tics). I know the need for that prophylaxis ABX-although I really hate that I have to give her ABX. She asks with every dose if it's the last one. I am starting to accept that we wil be doing this for years to come....

[PhillyPA]

Amoxicillian worked GREAT for my son when he first got sick. He would have a remission of most of his symptoms. He would not stay on it because we had no idea it was pandas. Everytime he took the amoxiciallian it worked great. But only for the first 18 months. Then, I guess the autoimmune process had "set in" more. It stopped working. Remember, he was not on it all the time. When he went off of it everything would slowly come back. I just knew that amox. made him so much better when he took it.

[momaine]

Sorry that I misread that and got off track. yes, I would think if the kids do well off antibiotics, that the most recent infection is gone. My only concern with my own child going off anitibiotics would be that she would relapse if infected again, even more often than she might while on prophylactic antibiotics. I guess the key will be to get them into such a good place (through ivig) that they don't have worsening pandas symptoms when they get an infection. Can't wait until we are there.